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Quality of care in for-profit and not-for-profit nursing homes: systematic review and meta-analysis

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• Peer review
• Vikram R Comondore , resident 1 ,
• P J Devereaux , associate professor 2 ,
• Qi Zhou , statistician 2 ,
• Samuel B Stone , resident 3 ,
• Jason W Busse , research associate 2 , scientist 4 ,
• Nikila C Ravindran , resident 5 ,
• Karen E Burns , staff physician 6 7 ,
• Ted Haines , associate professor 2 ,
• Bernadette Stringer , assistant professor 2 ,
• Deborah J Cook , professor 2 ,
• Stephen D Walter , professor 2 ,
• Terrence Sullivan , president and CEO 8 ,
• Otavio Berwanger , professor 9 ,
• Mohit Bhandari , associate professor 2 ,
• Sarfaraz Banglawala , resident 3 ,
• John N Lavis , associate professor 2 ,
• Brad Petrisor , assistant professor 3 ,
• Holger Schünemann , professor 2 10 ,
• Katie Walsh , summer research assistant 2 ,
• Neera Bhatnagar , reference librarian 11 ,
• Gordon H Guyatt , professor 2
• 1 Department of Medicine, University of British Columbia, Vancouver, BC, Canada V5Z 1M9
• 2 Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, ON, Canada L8N 3Z5
• 3 Department of Surgery, McMaster University
• 4 The Institute for Work and Health, Toronto, ON, Canada M5G 2E9
• 5 Department of Medicine, Division of Gastroenterology, University of Toronto, Toronto, M5T 2S8
• 6 St Michael’s Hospital, Toronto, M5B 1W8
• 7 Keenan Research Centre and Li Ka Shing Knowledge Institute, Toronto, M5B 1W8
• 8 Cancer Care Ontario, Toronto, M5G 2L7
• 9 Department of Clinical Epidemiology, Federal University of Rio Grande do Sul, Porto Alegre-RS, Brazil
• 10 Italian National Cancer Institute Regina Elena, Rome, 00144, Italy
• 11 Health Sciences Library, McMaster University
• Correspondence to: P J Devereaux  philipj{at}mcmaster.ca
• Accepted 21 April 2009

Objective To compare quality of care in for-profit and not-for-profit nursing homes.

Design Systematic review and meta-analysis of observational studies and randomised controlled trials investigating quality of care in for-profit versus not-for-profit nursing homes.

Results A comprehensive search yielded 8827 citations, of which 956 were judged appropriate for full text review. Study characteristics and results of 82 articles that met inclusion criteria were summarised, and results for the four most frequently reported quality measures were pooled. Included studies reported results dating from 1965 to 2003. In 40 studies, all statistically significant comparisons (P<0.05) favoured not-for-profit facilities; in three studies, all statistically significant comparisons favoured for-profit facilities, and the remaining studies had less consistent findings. Meta-analyses suggested that not-for-profit facilities delivered higher quality care than did for-profit facilities for two of the four most frequently reported quality measures: more or higher quality staffing (ratio of effect 1.11, 95% confidence interval 1.07 to 1.14, P<0.001) and lower pressure ulcer prevalence (odds ratio 0.91, 95% confidence interval 0.83 to 0.98, P=0.02). Non-significant results favouring not-for-profit homes were found for the two other most frequently used measures: physical restraint use (odds ratio 0.93, 0.82 to 1.05, P=0.25) and fewer deficiencies in governmental regulatory assessments (ratio of effect 0.90, 0.78 to 1.04, P=0.17).

Conclusions This systematic review and meta-analysis of the evidence suggests that, on average, not-for-profit nursing homes deliver higher quality care than do for-profit nursing homes. Many factors may, however, influence this relation in the case of individual institutions.

Introduction

Nursing homes provide long term housing, support, and 24 hour nursing care for people who are unable to function independently. Conservative forecasts from the European Union suggest that the need for nursing home care will double in the next 40 years as the population ages. 1 Many nursing home residents are bound to the routines, diets, and treatments prescribed by the home where they reside. In addition, many of them are unable to advocate for themselves because of physical, medical, cognitive, or financial limitations.

Concerns about quality of care in nursing homes are widespread among academic investigators, 2 3 4 5 the lay press, 6 7 8 9 10 11 and policy makers. 1 12 Whether a facility is owned by a for-profit or a not-for-profit organisation may affect structure, process, and outcome determinants of quality of care. In the United States, for example, two thirds of nursing homes are investor owned, for-profit institutions; in the United Kingdom, more than half of healthcare beds belong to independent nursing homes for older people, most of which are operated by for-profit institutions. 13 The type of ownership of nursing homes in Europe varies; countries with previously dominant public healthcare systems (such as Poland) now seek privatisation. 14 In Canada, 52% of nursing homes are in for-profit ownership, and not-for-profit care is evenly split between charitable or privately owned not-for-profit facilities and government or publicly owned not-for-profit facilities. 15 Both for-profit and not-for-profit nursing homes may have both public and private funding.

Several investigators have assessed the relation between for-profit/not-for-profit status and quality of care. 16 If quality or appropriateness of care varies significantly by ownership, this should influence government policies related to regulatory assessments and the use of public funds for nursing homes. The objective of this systematic review and meta-analysis was to examine the quality of care in for-profit and not-for-profit (privately and publicly owned) nursing homes to enhance the evidence base for public policy. This work is part of our series of systematic reviews comparing health outcomes, quality and appropriateness of care, and payment for care in for-profit and not-for-profit care delivery institutions. 17 18 19

Search strategy

We used a multimodal search strategy focused on 18 bibliographical databases, personal files, consultation with experts, reviews of references of eligible articles, and searches of PubMed (for related articles) and SciSearch (for articles citing key publications).

A medical librarian (NB) used medical subject heading terms and keywords from a preliminary search to develop database search strategies. In each database, the librarian used an iterative process to refine the search strategy through testing several search terms and incorporating new search terms as new relevant citations were identified. The search included the following databases from inception to April 2006: Medline, Embase, HealthSTAR, CINAHL, Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects, Cochrane Central Database of Controlled Trials, NHS Economic Evaluation Database, AgeLine, Web of Science, Proquest Dissertations and Theses, ABI/INFORM Global, CBCA Reference, EconLit, Proquest European Business, PAIS International, and Worldwide Political Science Abstracts. Search terms included nursing home specific terms (such as nursing homes, homes for the aged, long-term care) combined with ownership terms (such as proprietary, investor, for-profit, and competition). The web appendix gives a complete description of our database search strategies.

Study selection

Eligibility criteria.

Our inclusion criteria were as follows: patients—those residing in nursing homes in any jurisdiction; intervention—for-profit status of the institutions; comparator—not-for-profit status; and outcomes—measures of quality of care in for-profit and not-for-profit nursing homes.

Definition of quality of care

As described by the American Medical Association, quality of care is “care that consistently contributes to the improvement or maintenance of quality and/or duration of life.” 20 Quality of care was conceptualised by Donebedian as having inter-related structure, process, and outcome components. 21 Structure pertains to resources used in care (such as staffing). Process refers to action on the patient (such as use of restraint and urethral catheterisation). Outcome indicators assess the patient’s end result (such as pressure ulcers). Many quality of care instruments have been proposed, although none has been universally accepted. 22 Consequently, we used measures that authors defined as representing “quality of care” or “appropriateness of care,” provided that they defined a priori what constituted “good” or “poor” quality of care. The most frequently used quality measures were as follows.

Number of staff per resident or level of training of staff —The US Medicare/Medicaid nursing home regulations emphasise the importance of this measure of structure. 23 Studies have consistently shown a positive association between staffing and measures of both process and outcome quality. 24 25 26

Physical restraints —Although use of physical restraints can prevent patients from injuring themselves, restraints diminish a patient’s self esteem and dignity. By restricting mobility, they lead to both physical deterioration and the formation of painful pressure ulcers. 24 27 An Institute of Medicine report emphasised use of restraints as an important process measure. 23

Pressure ulcers —The importance of this outcome quality measure was also stressed by the Institute of Medicine. Pressure ulcers are preventable and are associated with pain and infection risk. 23

Regulatory (government survey) deficiencies —Deficiency citations by a regulatory body cover many aspects of nursing home care. Their strength lies in providing an overall measure of quality. Considerable work has gone into developing valid overall deficiency measures. 4

Definition of nursing home

In keeping with other definitions, 28 we defined a nursing home as a home for elderly people in which most residents require daily nursing care. We included all long term care facilities that met this definition, including those studies that specifically evaluated “skilled nursing facilities” and special care facilities such as those for patients with Alzheimer’s disease.

Assessment of study eligibility

Teams of two reviewers independently screened the titles and abstracts of all citations identified in our search, and if either reviewer thought that a citation might be eligible we retrieved the study for full text review. Research personnel who were not involved in the screening or data abstraction process masked the study results from the text and tables of potentially eligible articles by using a black marker. Teams of two reviewers independently evaluated each masked article to determine eligibility. All disagreements were resolved by consensus, with discussions with the project lead (VRC) about eligibility criteria as required. In the event of ambiguity about whether the outcome was a measure of quality of care, we erred on the side of being inclusive.

Data extraction and study quality evaluation

Multiple teams of two reviewers independently abstracted data from included articles. We collected data on geographical area, year, data source, unit of measurement (number of residents or nursing homes), and quality of care measure. We developed and applied a 0-5 scale for evaluating appropriate adjustments and a yes/no scale for inappropriate adjustments (box). We explored whether appropriate and inappropriate adjustment explained heterogeneity. Disagreements were resolved by consensus, with consultation of a third investigator when resolution could not be achieved.

Evaluation of quality of studies used in meta-analyses: appropriate and inappropriate adjustments

Appropriate adjustments (0-5).

One point for each of:

Having an adjusted analysis

Adjusting for age

Adjusting for severity of illness (comorbidities)

Adjusting for presence or absence or severity of dementia

Adjusting for payment status of residents (government funded v privately funded)

Inappropriate adjustments (yes/no)

Yes for adjusting for potential quality of care measures (that is, elements used to assess quality of care in a different study, such as pressure ulcer, restraint use, urinary catheterisation, staffing, or regulatory agency citations)

Statistical analysis

Many studies had for-profit versus not-for-profit comparisons including multiple measures of quality of care. When summarising results, we classified studies into three categories. (1) “All statistically significant differences favoured one ownership type”—studies fulfilled two requirements: at least one outcome with P<0.05 favoured either for-profit or not-for-profit and all outcomes with P<0.05 favoured the same funding structure (that is, all favour not-for-profit or all favour for-profit). (2) “Most but not all significant differences favoured one ownership type”—studies fulfilled two requirements: at least four quality measures had P<0.05 and three times as many outcomes with P<0.05 favour one ownership as favour the other. (3) “Mixed results”—all other results.

We pooled outcomes by using random effects models separately for the most frequently used quality of care measures: number of staff or level of training of staff, pressure ulcers, physical restraints, and regulatory (government survey) deficiencies. We considered P<0.05 to be statistically significant.

We used prevalence, rather than incidence, in reporting physical restraint use and pressure ulcers based on authors’ reporting of study outcomes. We report the odds ratios and 95% confidence intervals for these outcomes. When necessary, we converted other effect measures to odds ratios by using available data. For example, if the study reported a relative risk (RR) and the event proportion in for-profit nursing homes (P fp ), the odds ratios was calculated as (RR×(1− P fp ))/(1−P fp ×RR). Similarly, when the studies presented a β coefficient (an adjusted result representing difference in event proportions in for-profit and not-for-profit nursing homes, P fp −P nfp ), if the event proportion (Pc) in the study population and sample sizes (N fp and N nfp ) of the nursing homes in for-profit and not-for-profit were provided, solving the following two equations for P nfp and P fp , we computed the odds ratio: P fp −P nfp =β and (P fp ×N fp +P nfp ×N nfp )/(N fp +N nfp )=Pc. For the outcomes of deficiencies and staffing, we used the ratio of the effect from not-for-profit to for-profit nursing homes in pooling studies.

We avoided repetition of data on the same resident from different studies by preferentially using data from the larger dataset when necessary. One author (GHG) made these decisions by using blinded copies of articles while unaware of study outcomes. We requested supplemental data when available data was insufficient for analysis. We evaluated heterogeneity with both a χ 2 test and the I 2 statistic, interpreting a low I 2 as 25% or lower and a high I 2 as 75% or higher. 29 We examined funnel plots for evidence of publication bias. We applied a univariate meta-regression random effects model to each pooled outcome to evaluate potential sources of heterogeneity.

Hypotheses to explain heterogeneity

Our a priori hypotheses for sources of potential heterogeneity included analysis of privately owned and publicly owned nursing facilities in the same category, appropriate and inappropriate adjustments, the year of data collection, geography and political environment, and primary compared with secondary data collection. We did univariate meta-regression for each potential cause of heterogeneity. We present subgroup results if the likelihood of the differences between subgroups being due to chance was P<0.10. Our a priori hypotheses to explain heterogeneity are detailed below.

Analysing privately and publicly-owned not-for-profit facilities in the same category —We hypothesised that privately owned not-for-profit facilities may deliver superior care compared with publicly owned facilities, and thus comparisons between not-for-profit and for-profit facilities may yield different results if publicly owned facilities are included, as seen in previous studies. 19 We decided, a priori, to present the result of a for-profit versus privately owned not-for-profit meta-analysis separately from a for-profit versus not-for-profit meta-analysis regardless of whether privately or publicly owned not-for-profit status explained heterogeneity of the pooled estimate.

Extent of appropriate and inappropriate adjustment —We have defined concepts of appropriate and inappropriate adjustment in the data extraction section above. We compared studies with above median scores against those with scores below the median for assessment of appropriateness. Similarly, we compared studies with inappropriate adjustment against those without inappropriate adjustment, excluding studies that did not have an adjusted analysis.

Year of data collection —Legislation on quality of care in nursing homes was introduced in the United States under the Federal Nursing Home Reform Act (part of Omnibus Budget Reconciliation, 1987). Most of the studies we reviewed were from the United States. As a result, we compared data collected before and during 1987 versus after 1987.

Geography —We compared data collected inside and outside the United States, as geography and political environment are potential sources of heterogeneity.

Primary versus secondary data collection —We compared data acquired by primary (direct) data collection with those acquired by secondary (administrative agency) data collection.

Of the 8827 articles screened, we selected 956 for blinded full text review. Figure 1 ⇓ details the steps in this review. Our agreement on the eligibility of studies was very good (κ=0.73 on the basis of two questions: does the study evaluate nursing homes, and does the study compare quality of care in for-profit and not-for-profit facilities?). Disagreements stemmed from implied but not stated definitions in the articles regarding good and poor quality and implied but not stated quality of care measures. We requested supplementary data from 36 authors; 25 responded, of whom three did new analyses in response to our queries.

Fig 1  Flow chart of steps in systematic review

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We found 82 studies, spanning 1965 to 2003, comparing for-profit and not-for-profit nursing homes. w1-w82 We found 40 studies in which all statistically significant analyses (P<0.05) favoured not-for-profit homes and three in which all statistically significant analyses favoured for-profit homes. Similarly, 34 studies compared for-profit and privately owned not-for-profit nursing homes. In 16 of these, all statistically significant comparisons favoured higher quality in privately owned not-for-profit homes; none had all statistically significant analyses favouring higher quality in for-profit homes.

Tables 1 ⇓ and 2 ⇓ present a summary of the characteristics and outcomes of all studies included in this review and summarise the results of comparisons for quality measures evaluated by three or more studies. Tables 3 ⇓ and 4 ⇓ present the detailed study characteristics and outcomes of those studies that compared for-profit and privately owned not-for-profit facilities. Similarly, tables 5 ⇓ and 6 ⇓ present the detailed study characteristics and outcomes of studies that compared for-profit and not-for-profit (publicly and privately owned) facilities.

 Number of studies with quality of care comparisons favouring particular ownerships*: overall and staffing results

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 Number of studies with quality of care comparisons favouring particular ownerships: other results*

 Characteristics of studies comparing private for-profit and private not-for-profit nursing home quality of care

 Quality of care measures and outcomes of studies comparing private for-profit and private not-for-profit nursing homes (favoured directions represent those with higher quality care)

 Characteristics of studies comparing for-profit and not-for-profit nursing home quality of care (public and private NFP homes)

 Quality of care measures and outcomes of studies comparing for-profit and not-for-profit nursing homes (public and private NFP homes): favoured directions represent those with higher quality care

We meta-analysed data for the four most commonly used quality measures. Table 7 ⇓ presents a summary of the characteristics of studies meta-analysed, along with the results of sensitivity analyses to explain heterogeneity among studies in each meta-analysis. Two meta-analyses showed statistically significant results favouring higher quality care in not-for-profit nursing homes.

 Results of testing of a priori hypotheses to explain heterogeneity

We found more or higher quality staffing in not-for-profit homes (ratio of effect 1.11, 95% confidence interval 1.07 to 1.14, P<0.001, I 2 =91.6%) (fig 2 ⇓ ). We found a similar result favouring not-for-profit homes when assessing staffing hours alone, with a ratio of effect of 1.11 (1.08 to 1.14, P<0.001, I 2 =70.3%), an absolute hours increase of 0.42 (0.31 to 0.53) hours/resident/bed/day, and a relative hours increase of 11% (8% to 14%). When the only non-US study was excluded, we arrived at a similar ratio of effect for more or higher quality staffing in not-for-profit homes of 1.11 (1.07 to 1.15, P<0.001, I 2 =92.4%).

Fig 2  Ratio of effect sizes for staffing quality in for-profit (FP) and not-for-profit (NFP) nursing homes. Ratios listed represent effect size in NFP homes compared with that in FP homes. Ratio >1 indicates that NFP homes had more, or higher quality, staffing (that is, favours NFP)

We found a lower prevalence of pressure ulcers in not-for-profit homes (odds ratio 0.91, 95% confidence interval 0.83 to 0.98, P=0.02, I 2 =52.1%), with an absolute risk reduction of 0.59% (0.13% to 1.12%) and a relative risk reduction of 8.4% (1.9% to 16%) (fig 3 ⇓ ). When the only non-US study was excluded, we arrived at a similar odds ratio favouring lower pressure ulcer prevalence in not-for-profit homes of 0.89 (0.82 to 0.97, P=0.007, I 2 =50.2%).

Fig 3  Odds ratios (OR) comparing pressure ulcer prevalence in for-profit (FP) and not-for-profit (NFP) nursing homes. OR <1 indicates lower risk of pressure ulcers in NFP facilities than in FP facilities, suggesting that NFP facilities deliver higher quality care

The remaining two meta-analyses showed non-statistically significant differences. We found less use of physical restraints in not-for-profit homes (odds ratio 0.93, 0.82 to 1.05, P=0.25, I 2 =74.6%) (fig 4 ⇓ ) and fewer deficiencies in governmental regulatory assessments in not-for-profit homes (ratio of effect 0.90, 0.78 to 1.04, P=0.17, I 2 =59.8) (fig 5 ⇓ ).

Fig 4  Odds ratios (OR) comparing physical restraint prevalence in for-profit (FP) and not-for-profit (NFP) nursing homes. OR <1 represents less physical restraint use in NFP facilities than FP facilities, suggesting that NFP facilities deliver higher quality care

Fig 5  Ratio of effect sizes for regulatory deficiencies in for-profit (FP) and not-for-profit (NFP) nursing homes. Ratios listed represent effect size in NFP facilities compared with that in FP facilities. Ratio <1 represents fewer deficiencies in NFP homes, suggesting that NFP homes deliver higher quality care

Funnel plots for the four meta-analyses did not suggest publication bias. A priori hypotheses did not explain the observed heterogeneity (table 7 ⇑ ).

Our systematic review identified 82 studies comparing quality of care in for-profit and not-for-profit nursing homes. More studies had all statistically significant analyses showing higher quality in not-for-profit nursing homes than in for-profit nursing homes. Many studies, however, showed no significant differences in quality by ownership, and a small number showed statistically significant differences in favour of for-profit homes. This pattern held true when we compared for-profit homes with both privately owned and publicly owned not-for-profit facilities. Pooled analyses of the four most commonly used quality measures showed statistically significant results favouring higher quality care in not-for-profit homes for staffing and prevalence of pressure ulcers and non-statistically significant differences favouring not-for-profit homes in physical restraint use and regulatory agency deficiencies. The large observed heterogeneity was not explained by our a priori hypotheses.

Previous systematic reviews

Two previous systematic reviews have compared quality of care in for-profit and not-for-profit nursing homes. In 1991 Davis and colleagues found that many studies showed that higher quality of care was provided in not-for-profit nursing homes; however, weaknesses in the methodological design of the included studies limited the conclusions that could be drawn. 30 In 2002 Hillmer and colleagues did a systematic review comparing for-profit and not-for-profit facilities (including publicly owned facilities), focusing on studies in North America completed after the previous review. 31 This study also concluded that not-for-profit facilities provided better quality care than for-profit facilities.

Strengths and weaknesses of this review

We did a comprehensive search, which identified 60 studies not included in previous reviews. We assessed studies spanning four decades and published in any language. We masked study results before determining eligibility and did duplicate citation screening, data abstraction, and quality assessment. We contacted authors for missing data and received responses from most of them. We compared quality of care in both for-profit versus not-for-profit nursing homes and for-profit versus privately owned not-for-profit nursing homes, did pooled analyses of quality of care measures, and found largely consistent results.

Our review has limitations resulting from the characteristics of the studies included. No randomised trials have compared quality of care across nursing home ownership, and no such trials are ever likely to be done. Furthermore, most studies are from the United States, which raises questions of generalisability to other jurisdictions.

Studies are also limited in that no standard definition of quality of care exists. The result is that studies used a very wide variety of alternative measures of quality. Even when the same measures were used, standardised approaches to the application of those measures were lacking. For example, meta-analysis for number and qualifications of staff fails to take into account staff turnover, the use of agency staff, and the professional mix of staff. 25

Moreover, several eligible studies used administrative databases, which further limits the comprehensiveness and quality of the data. For example, the American Online Survey Certification and Reporting (OSCAR) database comprises self reported data from nursing home administrators; surveyors verify only a sample. Careful duplicate abstraction of data from patients’ charts with a priori definitions or, ideally, direct assessment of care provision would be preferable.

Our meta-analyses are limited in that many authors could not remove publicly owned facilities from their datasets for our for-profit versus privately owned not-for profit analysis. However, in our sensitivity analyses, results comparing for-profit and not-for-profit facilities were not significantly different from those in which we restricted the not-for-profit facilities to those for which we could confirm ownership.

Heterogeneity

On the one hand, one might see our results as compellingly favouring not-for-profit facilities. The gradient between studies in which all significant measures favoured not-for-profit (40 studies) and those in which all measures favoured for-profit (3) is large (table 1 ⇑ ). All four meta-analyses favoured not-for-profit institutions, and two reached statistical significance.

On the other hand, 37 studies had mixed results (some measures favoured for-profit, some not-for-profit) and considerable heterogeneity was present in the results of the meta-analyses. This suggests that although the average effect is clear, that effect probably varies substantially across situations. The variability is probably explained, in part, by a variety of factors that vary within categories of for-profit and not-for-profit homes, including management styles, motivations, and organisational behaviour. For example, for-profit facilities owned and operated by investor owned corporations may have different motivations than facilities owned by small private businesses or single proprietors. Not-for-profit facilities run by charities might differ in structure and process from those run by municipalities; not-for-profit facilities that are managed by for-profit nursing home companies may function differently from those that are not.

We have partially mitigated this problem with our a priori hypotheses (extent of appropriate adjustments, year of data collection, geography and political environment, primary compared with secondary data collection, and, in particular, public versus private ownership of not-for-profit facilities). None of these variables, however, explained the substantial heterogeneity of our results. The studies failed to specify characteristics of individual nursing homes in sufficient detail to allow analyses exploring factors such as those listed above (ownership by corporation, small business, charitable organisation of municipality; management of not-for-profit homes by for-profit providers).

Significance of this study

Most of the studies in our systematic review showed lower quality of care in for-profit nursing homes than in not-for-profit nursing homes. However, a large proportion of studies showed no significant difference in quality of care by ownership. In the long term care market, in which funding is often provided by the government at fixed rates, both for-profit and not-for-profit facilities face an economic challenge that may affect staffing and other determinants of quality of care. In the for-profit context, however, shareholders expect 10-15% returns on their investments, 32 taxes may account for 5-6% of expenses, and facilities tend to have higher executive salaries and bonuses, so for-profit facilities have a strong incentive to minimise expenditures. 33 Minimising expenditures may lead to lower quality staffing and higher rates of adverse events (such as pressure ulcers), which may be reflected in citations for deficiency.

Proving causality by using observational studies is difficult. Furthermore, given their variability, the results do not imply a blanket judgment of all institutions. Some for-profit institutions may provide excellent quality care, whereas some not-for-profit institutions may provide inferior quality of care.

Our findings are, however, consistent with findings of higher risk adjusted death rates in for-profit hospitals and dialysis facilities as shown in previous reviews, 18 19 as well as providing insight into average effects. Given the absolute risk reduction in pressure ulcers of 0.59%, we can estimate that pressure ulcers in 600 of 7000 residents with pressure ulcers in Canada and 7000 of 80 000 residents with pressure ulcers in the United States are attributable to for-profit ownership. Similarly, given an absolute increase in nursing hours of 0.42 hours per resident per bed per day, we can estimate that residents in Canada would receive roughly 42 000 more hours of nursing care a day and those in the United States would receive 500 000 more hours of nursing care a day if not-for-profit institutions provided all nursing home care. These estimates are based on the 2006 census from Canada showing that 100 740 of 252 561 nursing home residents resided in for-profit nursing homes and the 2000 census from the United States showing a total of 1 720 500 nursing home residents. 34 35 These estimates assume that two thirds of US nursing home residents live in for-profit facilities.

Further research and conclusions

Although this review has fully assessed the data available comparing for-profit and not-for-profit nursing home care, additional work is needed to compare the costs between these types of facilities and to evaluate the consistency of these findings outside of the United States and Canada. Although we have extensively evaluated the literature comparing quality of care in for-profit, charitable organisation owned, and government owned nursing homes, the available studies did not allow comparison of the possible impact of factors such as subcategory of for-profit ownership (for example, chain v non-chain, investor v small business ownership, municipality v federal government ownership). Nursing home management companies further complicate the relation between ownership and quality of care. These are all important areas that warrant further research.

What is already known on this topic

The quality and appropriateness of care delivered in nursing homes is a major concern for the public, policy makers, and media

Controversy exists about whether for-profit compared with not-for-profit ownership affects quality of care

What this study adds

Most studies suggest a trend towards higher quality care in not-for-profit facilities than in for-profit homes, but a large proportion of studies show no significant trend

Cite this as: BMJ 2009;339:b2732

We acknowledge the outstanding work of Deborah Maddock, Denise Healey, Shelley Anderson, Michelle Murray, Monica Owen, and Laurel Grainger who coordinated this study. We thank our foreign article reviewers Janek Brozek, Matthias Briel, Toshi Furukawa, Marjuka Makela, Ben de Mol, Paola Muti, Patricia Smith, Kristian Thorlund, and David Wei. We appreciate the work of Dana Keilty, Navneet Binepal, Tony Soeyonggo, and Minji Kim, who blinded articles for us. We thank Christina Lacchetti, Michael Levy, and Rajesh Hiralal, who reviewed articles for us, and Diane Heels-Ansdell for her statistical help. We also thank the authors of included studies who did additional analyses for our systematic review: Chappin White, Robert Weech-Maldonado, and Ann L. Gruber-Baldini.

Contributors: VRC, PJD, GHG, and TS conceived and designed the study. OB, MB, NB, VRC, DJC, PJD, GHG, SB, JWB, KEB, TH, JNL, BP, NCR, HS, BS, SBS, QZ, and KW were involved in data acquisition. VRC, GHG, QZ, and PJD analysed and interpreted the data. VRC drafted the manuscript. GHG, PJD, and QZ critically revised the manuscript for important intellectual content. QZ and SDW provided statistical expertise. VRC, PJD, and GHG are the guarantors.

Funding: Atkinson Foundation Grant; the study sponsor did not contribute to the study design. JWB is funded by a Canadian Institutes of Health research fellowship award. DJC, MB, and JNL are supported, in part, by their respective Canada Research chairs. PJD is supported by a Canadian Institutes of Health Research new investigator award. HS is funded by a European Commission: The Human Factor, Mobility and Marie Curie Actions scientist reintegration grant (IGR 42192).

Competing interests: None declared.

Ethical approval: Not needed.

This is an open-access article distributed under the terms of the Creative Commons Attribution Non-commercial License, which permits use, distribution, and reproduction in any medium, provided the original work is properly cited, the use is non commercial and is otherwise in compliance with the license. See: http://creativecommons.org/licenses/by-nc/2.0/ and http://creativecommons.org/licenses/by-nc/2.0/legalcode .

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Open Access

Peer-reviewed

Research Article

A qualitative assessment of factors affecting nursing home caregiving staff experiences during the COVID-19 pandemic

Roles Data curation, Formal analysis, Investigation, Methodology, Project administration, Validation, Writing – original draft, Writing – review & editing

* E-mail: [email protected]

Affiliation Division of Healthcare Quality Promotion, Centers for Disease Control and Prevention, Atlanta, Georgia, United States of America

Roles Formal analysis, Methodology, Project administration, Writing – original draft, Writing – review & editing

Roles Formal analysis, Investigation, Methodology, Writing – original draft, Writing – review & editing

Roles Formal analysis, Writing – review & editing

Roles Data curation, Formal analysis

Roles Conceptualization, Investigation, Writing – review & editing

Roles Conceptualization, Investigation, Supervision, Writing – review & editing

Roles Conceptualization, Data curation, Formal analysis, Investigation, Methodology, Project administration, Supervision, Writing – original draft, Writing – review & editing

• Rachel L. Snyder, 
• Laura E. Anderson, 
• Katelyn A. White, 
• Stephanie Tavitian, 
• Lucy V. Fike, 
• Heather N. Jones, 
• Kara M. Jacobs-Slifka, 
• Nimalie D. Stone, 
• Ronda L. Sinkowitz-Cochran

• Published: November 15, 2021
• https://doi.org/10.1371/journal.pone.0260055
• Reader Comments

A large portion of COVID-19 cases and deaths in the United States have occurred in nursing homes; however, current literature including the frontline perspective of staff working in nursing homes is limited. The objective of this qualitative assessment was to better understand what individual and facility level factors may have contributed to the impact of COVID-19 on Certified Nursing Assistants (CNAs) and Environmental Services (EVS) staff working in nursing homes.

Based on a simple random sample from the National Healthcare Safety Network (NHSN), 7,520 facilities were emailed invitations requesting one CNA and/or one EVS staff member for participation in a voluntary focus group over Zoom. Facility characteristics were obtained via NHSN and publicly available sources; participant demographics were collected via SurveyMonkey during registration and polling during focus groups. Qualitative information was coded using NVIVO and Excel.

Throughout April 2021, 23 focus groups including 110 participants from 84 facilities were conducted homogenous by participant role. Staffing problems were a recurring theme reported. Participants often cited the toll the pandemic took on their emotional well-being, describing increased stress, responsibilities, and time needed to complete their jobs. The lack of consistent and systematic guidance resulting in frequently changing infection prevention protocols was also reported across focus groups.

Conclusions

Addressing concerns of low wages and lack of financial incentives may have the potential to attract and retain employees to help alleviate nursing home staff shortages. Additionally, access to mental health resources could help nursing home staff cope with the emotional burden of the COVID-19 pandemic. These frontline staff members provided invaluable insight and should be included in improvement efforts to support nursing homes recovering from the impact of COVID-19 as well as future pandemic planning.

Citation: Snyder RL, Anderson LE, White KA, Tavitian S, Fike LV, Jones HN, et al. (2021) A qualitative assessment of factors affecting nursing home caregiving staff experiences during the COVID-19 pandemic. PLoS ONE 16(11): e0260055. https://doi.org/10.1371/journal.pone.0260055

Editor: Anat Gesser-Edelsburg, University of Haifa, ISRAEL

Received: August 31, 2021; Accepted: October 30, 2021; Published: November 15, 2021

This is an open access article, free of all copyright, and may be freely reproduced, distributed, transmitted, modified, built upon, or otherwise used by anyone for any lawful purpose. The work is made available under the Creative Commons CC0 public domain dedication.

Data Availability: De-identified qualitative transcripts are available only upon request noting the sensitive nature of the SARS-CoV-2 (COVID-19) response and the need to protect participants identities. Data requests should be fielded to CDC publishing coordinator: [email protected] .

Funding: The author(s) received no specific funding for this work.

Competing interests: The authors have declared that no competing interests exist.

Introduction

A large portion of COVID-19 cases and deaths in the United States have occurred in nursing homes and other long-term care settings, with over 1.3 million confirmed cases and over 137,000 confirmed deaths among residents and staff as of September 12, 2021 [ 1 ]. During the pandemic, nursing homes have also experienced shortages of both personal protective equipment (PPE) and staff, potentially affecting their ability to safely provide care [ 2 ]. In addition to the risk of both contracting and spreading SARS-CoV-2, the virus causing COVID-19, the mental health of nursing home staff may also be affected by the pandemic, as several studies have illustrated symptoms of anxiety, depression, and post-traumatic stress in frontline healthcare personnel during the pandemic [ 3 – 5 ]. As staff are likely important contributors to the transmission of SARS-CoV-2 in nursing home settings [ 6 ], more knowledge is needed regarding the experiences of nursing home staff during the COVID-19 pandemic.

Despite their important role in both the care of residents and preventing spread of SARS-CoV-2, current literature that includes the frontline perspective of Certified Nursing Assistants (CNA) and Environmental Services (EVS) staff members (also referred to as housekeeping) working in nursing homes is limited. The objective of this qualitative assessment was to better understand what individual and facility-level factors may have contributed to the impact of the COVID-19 pandemic in nursing homes by examining the perceptions of CNAs and EVS staff regarding COVID-19 prevention efforts and self-reported behaviors and beliefs.

Four pilot focus groups were conducted with a total of 30 CNAs from Genesis Healthcare nursing home facilities from February 3–12, 2021. Pilot data were used to standardize discussion and polling questions and refine recruitment processes for the expanded focus groups. Data collected during the pilot are not included in this manuscript.

Recruitment

Facilities were selected based on a simple random sample of the 15,351 long-term care facilities actively reporting to the National Healthcare Safety Network (NHSN) as of March 23, 2021. NHSN Administrators from 7,520 facilities were emailed invitations requesting one CNA and/or one EVS staff member from each facility to voluntarily participate in a focus group.

Focus groups

Focus groups were conducted homogenous by participant role (CNAs separate from EVS) and were offered during weekdays and weekends, with morning, afternoon, and night sessions to accommodate differing shifts. On average, focus groups ranged in length from 35–50 minutes and varied in size from one to ten participants. To encourage open sharing, all responses provided by participants were confidential and no individual comments from focus groups were shared with supervisors or nursing homes where participants were employed.

Data sources

Facility characteristics were obtained via NHSN, the National Center for Health Statistics (NCHS) Urban-Rural Classification Scheme [ 7 ] and the Centers for Disease Control and Prevention (CDC) Social Vulnerability Index (SVI) [ 8 ] based on facility county. Chi-square tests were used to compare the distribution of selected variables (urban/rural facility location, SVI quartile, facility bed size quartile, and facility ownership) between participant facilities and the general population of nursing homes actively reporting into NHSN, with p values < 0.05 considered statistically significant. Analyses were conducted using SAS version 9.4 software (SAS Inc., Cary, NC, USA) for Windows. Individual participant demographics were obtained via a voluntary and anonymous SurveyMonkey during registration, as well as voluntary polling on the Zoom platform during the focus groups. As such, individual demographic data were not provided for all participants, and the demographics summaries may include data from individuals who registered but did not participate in the focus groups. Polling on the Zoom platform was also used to obtain voluntary responses to questions regarding perceived risk of getting COVID-19 in the facility (at the beginning of the pandemic and at the time of focus groups), greatest barrier/challenge to preventing COVID-19 in the facility (at the beginning of the pandemic and at the time of focus groups), and preferred channels of communication. The remaining information was obtained during open discussion with the use of a standardized script and questions guided by a trained facilitator regarding facility strengths and weaknesses, changes in job responsibilities, what the participants wish they had known at the start of the pandemic, what they are most worried/concerned about moving forward, and other topics specific to COVID-19. These data were qualitatively coded by question using an immersion and crystallization technique and summarized using NVIVO and Excel across a team of trained coders to ensure reliability [ 9 ]. No tests for statistical significance were performed among discussion responses or individual participant demographics.

All responses were provided voluntarily and, due to the open discussion format, not every participant provided a response to every question nor were they directly asked to do so during the focus groups. Percentages presented are calculated based on the total number of participants that provided a response to the individual question, not the total number of focus group participants. Participants’ responses were categorized to each individual code only once; however, responses may be categorized to more than one code. Therefore, percentages within a question may sum to over 100% and may not sum to the percentages for the broader convergent themes presented in text. This activity was reviewed by CDC and was conducted consistent with applicable federal law and CDC policy (See e.g., 45 C.F.R. part 46, 21 C.F.R. part 56; 42 U.S.C. §241(d); 5 U.S.C. §552a; 44 U.S.C. §3501 et seq.). Participants provided verbal consent prior to the start of the focus groups. Per determination by the CDC’s National Center for Emerging and Zoonotic Infectious Diseases (NCEZID) Human Subjects Advisor, this qualitative assessment does not meet the definition of research under 45 C.F.R. 46.102(l) and IRB review is not required. NCEZID’s determination holds that the project did not require submission to CDC’s Human Research Protection Office as granting authority is delegated to the CDC Centers, Institutes, and Offices under CDC Policies SSA-2010-01 and SSA-2010-02.

Demographics

Throughout April 2021, 23 focus groups were held including 110 participants from 84 nursing home facilities across 34 states. Twelve of the focus groups were held for CNAs (51 participants total) and 11 for EVS staff (59 participants total). Of the 84 participating nursing homes, 73% were located in urban areas and 51% were for-profit facilities ( Table 1 ). When a chi-square test was used to compare the distribution of selected variables between the 84 participant facilities and the general population of nursing homes actively reporting into NHSN, participant facilities had a greater proportion of non-profit ownership, and a smaller proportion of for-profit ownership when compared with the general population of nursing homes ( Table 1 ). A greater percentage of participant facilities were in the second quartile (low/moderate range) of social vulnerability. There were no significant differences in the distributions of bed size or urban/rural facility locations.

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The majority of participants answering demographic questions at the time of focus group registration were White (68%) and identified as female (89%) with an average age of 43 years ( Table 2 ). Since the beginning of the pandemic, 39% had tested positive for COVID-19, 75% were fully vaccinated with a COVID-19 vaccine at the time of the focus group, and most (95%) were employed directly through their nursing home facilities. The majority (87%) of participants answering Zoom polling questions during the focus groups reported working day shift, 44% reported having over 10 years of work experience in total, and half (52%) reported at least five years of experience at their current facility.

https://doi.org/10.1371/journal.pone.0260055.t002

Perceived risk of getting COVID-19

When answering a Zoom poll of their perceived risk of getting COVID-19 at their facility on a scale of one (“Not at All”) to ten (“To a Great Extent”), the responses among participants were more evenly distributed when asked about their perceived risk of getting COVID-19 in their facility at the beginning of the pandemic (30% reporting 1, 2, or 3; 40% reporting 4, 5, 6, or 7; 30% reporting 8, 9, or 10) than compared with at the time of the focus group (79% reporting 1, 2, or 3; 17% reporting 4, 5, 6, or 7; 4% reporting 8, 9, or 10) ( S1 Fig ). When asked to discuss where they felt more at risk of getting COVID-19, almost 75% of participants mentioned feeling more at risk outside of the facility, often comparing the precautions taken at their workplace with the lack of precautions and unknown COVID status among those they encountered outside the facility. In the words of one participant, they felt more at risk “ Outside the facility , because we can’t make those people out there obey the rules that’s going to keep [COVID] under control .”

Changes in duties and responsibilities of nursing home caregiving staff

When asked how their job responsibilities or duties had changed due to the COVID-19 pandemic, 68% of participants who responded reported performing tasks beyond their scope of work and added responsibilities, 62% reported an increase in time required to complete tasks, and 27% reported added pressures; 7% reported no changes in their responsibilities. Specific changes reported, as shown in Table 3 , included the new responsibility of rule and protocol enforcement, as described by one staff member “ We had to come in long days and screen everybody as well as keep a closer eye on interactions between families , ” and additional cleaning and disinfection of high-touch surfaces with one participant stating that they “ just clean continuously .” Participants specifically reported an increase in time required to complete tasks due to frequent donning and doffing of additional PPE and staffing shortages; in the words of one staff member “ that was difficult , being short-staffed when actually we need to bump up the disinfection and sanitation and having less people to do it .” Participants also reported added pressures specifically from the increased stress and anxiety of their job, describing that “ You’re not only worried about yourself and your residents , but you’re worried about bringing it home as well .” Other changes expressed by participants included frequent changes in policies and protocols, for example, “ policies would change on a daily basis , so it was a problem . It was confusing for most of the staff .” Additionally, staff reported consideration for the mental health of residents, as one participant indicated, “ we’re kind of running emotional support too , trying to be there for the residents while trying to take care of everything else .”

https://doi.org/10.1371/journal.pone.0260055.t003

Perceived barriers to preventing COVID-19 in facility

When answering a Zoom poll of the one greatest barrier to preventing COVID-19 in their facility, the most common barriers participants reported at the beginning of the pandemic were staffing shortages (30%), followed by lack of training or education (20%), lack of PPE (13%), staff disbelief (staff not believing COVID-19 was a problem) (12%), frequent staff turnover (4%) and limited COVID-19 testing (4%); 6% of participants selected that their facility had no barriers to preventing COVID-19 at the beginning of the pandemic and 12% selected the option of other greatest barrier (e.g., “ the Unknown ”).When answering the same question at the time of the focus groups, the greatest barrier to preventing COVID-19 in their facility also was staffing shortages (48%), followed by frequent staff turnover (13%), staff disbelief (8%), lack of leadership support (2%), lack of PPE (1%), and lack of training or education (1%); 15% reported no barriers to preventing COVID-19 at the time of the focus groups and 11% selected the option of other greatest barrier (e.g., opening for visitation).

Considerations for what nursing home facilities could improve on

When asked what their nursing home could improve on, the most convergent themes reported by participants in the discussion were to improve staffing (33% of respondents), improve infection prevention practices (29%), and improve organizational culture (19%), while 31% of respondents reported no areas for improvement in their facility and that the facility did the best they could in the circumstances. Of note, participants specifically mentioned their facilities could improve by mitigating staffing shortages, including that “ if we had more hands on , it could have prevented a lot of things that happened due to COVID ”, in addition to providing incentive payments, as stated by one participant “ If we would have gotten more hazard pay for everyone and not just the people who worked in the COVID [unit] , people would have shown up for work more” , limiting frequency of changes to protocols or guidance (i.e., “We were constantly changing things employee wise , changing things resident wise ”) and improving communication within the facility, as described by one participant, “ Sometimes they don’t give us all the information… sometimes we have no idea what’s going on ” ( Table 4 ).

https://doi.org/10.1371/journal.pone.0260055.t004

Advice/what do you wish you would have known

In a discussion about what participants wish they would have known at the beginning of the pandemic and advice they would give to other CNAs or EVS staff members about COVID-19 in nursing homes, the most common responses were that staff wish they would have known the magnitude of the pandemic (e.g., length, seriousness, transmissibility; including “I wish from the get-go I would have realized that it was as bad as what they were saying” ), along with advice to use PPE, to treat residents like family, and to wash your hands ( Table 5 ). As expressed by participants, it is essential “just to make sure that staff are wearing that PPE right , make sure you’re washing your hands . Have respect for everybody that’s around because it’s not just stressful for you , it’s stressful for everybody . And if nothing else , more stressful for the residents” and “to just remember they [the residents] don’t get to go home . They live here… and we are their family , their friends , their husbands , their wives…it’s a very serious job . ” In addition, one EVS staff member also emphasized “the importance of our role in keeping things at bay . We’re not ancillary employees when it comes to COVID . ”

https://doi.org/10.1371/journal.pone.0260055.t005

Concerns and needs of staff moving forward

When participants were asked what they were most worried or concerned about related to COVID-19 in the nursing home moving forward, the most convergent themes mentioned in discussion were fear of experiencing another COVID-19 outbreak (69% of respondents), concerns about the mental wellbeing of staff (26%) and residents (17%), and concerns about staffing capacity and future workforce development (8%); 6% of respondents reported they had no concerns moving forward. As shown in Table 6 , specific concerns included fear of COVID-19 coming back into the facility, with one participant describing that they are “ afraid that it’s going to come back into our facility with a force , ” along with concerns about complacency in COVID-19 prevention practices and the continued emergence of COVID-19 variants. Concerns about mental well-being specifically included staff emotional strain and anxieties and the effects of social isolation on residents, with one EVS staff member stating, “ To see the heartbreak [of our residents]… it’s heart wrenching to watch… And then [to have to] take that home [as staff members] . That’s really difficult . For housekeeping especially… We don’t really have all of those tools in our toolbox . That mental health , being able to process that , and not take work home all the time . That’s difficult . That’s real difficult .” Additionally, participants expressed concerns about staffing shortages with one participant describing they “hope that the staffing gets better . No one wants to come and work in a nursing home . ”

https://doi.org/10.1371/journal.pone.0260055.t006

Methods of communication for information about COVID-19

When responding to a Zoom poll question regarding where they go to find information about preventing COVID-19 in nursing homes, the majority of participants selected through their nursing home facility (63%), followed by the CDC website (19%), their state or local public health department (9%), the news (6%), their contracting agency (2%), and their coworkers (2%). Additionally, when asked how CDC can best reach staff with new guidance or information about COVID-19, most selected through their nursing home facility (64%), followed by a direct email from CDC (25%), a CDC webinar (4%), state or local public health department (3%), direct mail from CDC (2%), social media (1%), and through their professional organization or society (1%).

The objective of this qualitative assessment was to understand the impact of COVID-19 among nursing home staff and how both individual and facility level factors may have played a role in the pandemic experience. To explore such factors, we examined CNA and EVS staff perceptions of COVID-19 prevention efforts and self-reported behaviors and beliefs. Convergent themes and perceptions reported across the focus groups included the problem of staffing shortages, the toll of the pandemic on staff emotional and psychological well-being, concern for the physical and emotional well-being of nursing home residents, and the lack of consistent and systematic guidance resulting in rapidly changing infection prevention protocols. Additionally, the need for directly engaging CNAs and EVS staff members became evident, as many participants were grateful for the opportunity to participate in the discussion and shared invaluable insight through the lens of frontline staff members.

Participants across focus groups consistently reported the need to mitigate staffing shortages. Concerns included, but were not limited to, low wages and inconsistent employment benefits and incentives, such as supplemental hazard pay for essential workers. Participants shared the demands of taking on entirely new responsibilities and an increasing resident-to-staff ratio as nursing home staff quit or were placed under quarantine, and hiring new staff proved difficult. Staffing concerns have been similarly reported by frontline staff in previous studies [ 10 , 11 ] and align with an analysis of NHSN data finding that nursing homes across the US have experienced significant staffing shortages during the COVID-19 pandemic [ 2 ]. Improving the employment outlook of CNA and EVS nursing home staff members may help ensure nursing home capacity and employee retention, as participants reported quickly burning out under the added pressure of an ongoing pandemic. Empowering CNAs has previously been associated with increased staff retention in US nursing homes [ 12 ] and a qualitative study with CNAs found the availability of resources, such as equipment and staffing, may help to enable coping with the increased emotional burden of the COVID-19 pandemic [ 13 ]. One observation of note from our findings was that when a participant stated they had received hazard pay, or other financial incentive for working during the pandemic, they tended to make more positive statements about their facility and its overall handling of the pandemic. Additionally, improving pay and benefits such as paid sick leave may be especially important, as even prior to the COVID-19 pandemic, a survey of staff working in long-term care facilities found that 70% of respondents reported feeling obligated to work while sick and almost 20% of CNAs held a second job [ 14 ].

Another resounding theme that emerged amongst the participants was the toll the pandemic took on the emotional and psychological wellbeing of CNA and EVS staff members, as well as concern for the physical and emotional well-being of the nursing home residents in their care. Due to prolonged isolation and restricted visitation in the nursing home, CNA and EVS staff described filling a familial role for residents, increasing both responsibility and emotional burden on an already taxing workload. CNA and EVS staff members emphasized their dedication to their residents, describing them as family, feeling heartbroken and helpless to improve their often-perceived hopeless situation. Both CNA and EVS staff reported feeling unprepared to handle the stress of their position in a pandemic that often felt never-ending. As this theme of stress and burnout has also been reported in other qualitative studies of nursing home staff [ 10 , 11 ], mental health services may be important for nursing home staff affected by the close and compassionate role they serve for residents in nursing home care.

Participants also repeatedly described a lack of consistent and systematic guidance resulting in rapidly changing facility infection prevention protocols. Despite this, many felt their facilities did the best they could with what they had to support their staff, and that teamwork was an integral part to their collective survival through the COVID-19 pandemic. In the end, the focus groups became a space where participants could process the trauma of the pandemic amongst their peers and voice their invaluable perspectives on what went right and wrong through the lens of frontline nursing home staff. Participants expressed their gratitude for being included in this discussion, and for the space they were given to safely discuss their experiences.

This qualitative assessment was subject to several limitations. Participating nursing home facilities and staff represented a voluntary convenience sample. All data collected were self-reported and subject to recall bias, as well as social desirability bias. Generalizability of participant perceptions may be limited, as participants may not be representative of the overall nursing home staff population in the United States, with more participating facilities located in counties in the low/moderate range of social vulnerability and more facilities having non-profit ownership than the general population of non-participating US nursing homes. A higher percentage of focus group participants also identified as White compared to an analysis of long-term care staff nationally (68% versus 52%) [ 15 ] and a higher percentage of participating CNAs reported vaccination compared to aides in an analysis of nursing homes reporting vaccination coverage to NHSN as of March 1-April 4, 2021 (62% versus 46%) [ 16 ]. Additionally, generalizability may also be limited due to the small number of responses for some discussion questions and because outreach was conducted though nursing home administrators who facilitated staff member participation. All focus groups were conducted using the Zoom platform which posed unique challenges with varying Internet bandwidth and a learning curve with less technologically adept participants. In addition, due to the voluntary and anonymous nature of select data sources, the ability to measure associations between individual demographics (e.g., race, age, gender, COVID-19 infection status) and responses was limited; it may be of future interest to further explore potential relationships between individual and facility factors and participant responses in larger sample sizes. Future assessments should also examine staffing shortages and the impact of geographical location, SVI, facility ownership, and facility bed sizes on staffing ratios in a non-pandemic setting.

Despite these limitations, the focus group discussions illustrated that the overall impact of the pandemic was not simply whether a nursing home staff member tested positive for COVID-19, but rather the effect the pandemic had on the entire lived experience of these participants in both a professional and personal capacity. Addressing concerns of low wages and lack of financial incentives may have the potential to attract and retain employees to help alleviate nursing home staff shortages. Furthermore, access to mental health resources could help CNA and EVS staff cope with the emotional burden of the COVID-19 pandemic and increase resiliency. Additionally, CNA and EVS staff may benefit from training to improve their ability to care for residents’ emotional and psychological well-being. Speaking to these frontline staff members provided invaluable insight. Moving forward, CNAs and EVS staff should be a direct target audience for messaging of guidance changes. These frontline staff members should be included in improvement efforts to support nursing homes recovering from the impact of COVID-19 as well as future pandemic planning at the facility, state, and national levels.

Supporting information

S1 fig. zoom poll responses: how at risk were you of getting covid-19 in your facility..

https://doi.org/10.1371/journal.pone.0260055.s001

S1 Table. Qualitative codes operationalized by select quotes from discussion: How have your job responsibilities or duties changed because of COVID-19?.

https://doi.org/10.1371/journal.pone.0260055.s002

S2 Table. Qualitative codes operationalized by select quotes from discussion: What can your nursing home improve on? what is one thing you wish your nursing home could have done for CNAs/EVS staff during the pandemic to make things better?.

https://doi.org/10.1371/journal.pone.0260055.s003

S3 Table. Qualitative codes operationalized by select quotes from discussion: What do you wish you would have known? what one piece of advice would you share with another CNA/EVS staff member about COVID-19 in nursing homes?.

https://doi.org/10.1371/journal.pone.0260055.s004

S4 Table. Qualitative codes operationalized by select quotes from discussion: Moving forward, what are you most worried/concerned about related to COVID-19 in the nursing home? what do CNA/EVS staff need most moving forward?.

https://doi.org/10.1371/journal.pone.0260055.s005

S1 File. Script of qualitative discussion questions and poll questions.

https://doi.org/10.1371/journal.pone.0260055.s006

Acknowledgments

We want to express our gratitude to the CNA and EVS staff members who graciously shared their experiences throughout the COVID-19 pandemic. The dedication to their residents and nursing homes was inspiring and made clear the invaluable role they serve for nursing home residents.

The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.

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Article Contents

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Living well in care homes: a systematic review of qualitative studies

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Siobhan Aine Bradshaw, E. Diane Playford, Afsane Riazi, Living well in care homes: a systematic review of qualitative studies, Age and Ageing , Volume 41, Issue 4, July 2012, Pages 429–440, https://doi.org/10.1093/ageing/afs069

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Background: research in care home settings is often negatively focused, portraying life as sterile and devoid of meaningful experiences. Care homes have the potential to influence people's lives socially, physically and psychologically. It is important to understand what factors contribute to this.

Objective: to conduct a systematic qualitative review of care home life and provide practical recommendations to enhance residents' quality of life.

Methods: the following databases were searched: PsycINFO, Medline, Web of Science, EMBASE, Allied and Complementary Medicine Database and Cumulative Index to Nursing and Allied Health Literature. References from appropriate journals and individual articles were checked. Papers that fitted our selection criteria were selected. Two independent reviewers assessed methodological study quality. Thematic analysis and meta-ethnographic methods were adapted to synthesise findings.

Results: thirty-one studies were identified. People in care homes voiced concerns about lack of autonomy and difficulty in forming appropriate relationships with others. Four key themes were identified: (i) acceptance and adaptation, (ii) connectedness with others, (iii) a homelike environment, (iv) caring practices.

Conclusion: positive experiences in care homes can occur and are important for residents' quality of life. The review supports literature highlighting the need for relationship-centred approaches to care and emphasises the importance of understanding the resident's attitude towards living in care homes.

People of all ages live in care homes [1], although most research has focused on older people [2]. Moving into a care home involves life changes that significantly impacts on an individual's quality of life (QoL). These include substantial alterations in social interactions and adapting to issues involving privacy, dignity and independence [2].

Residents are often marginalised and excluded from research [3]. Negative aspects of care home life are often highlighted, e.g. some would rather die than move to a care home [4]. Lack of privacy and dignity [5], regimented routines and a feeling of emptiness can affect a person's sense of control [6]. However, some positive aspects, such as improved self-worth [7], morale [7] and physical functioning [8] have been reported.

With the rising cost of care homes and financial implications for both society and the individual, we need to synthesise residents' views on what influences QoL, so that care homes can deliver high quality care and minimise distress. While a vast amount of quantitative data are available, the validity of using subjective QoL outcomes measures, especially for older people, has been questioned [9]. Previous qualitative research synthesised older residents' views on QoL in care homes [ 10 ], but did not use systematic methods in relation to synthesis or study quality. To our knowledge, there has been no systematic attempt to collate the views of different types of people living in care homes, including younger adults, and those with dementia and disabilities.

Our aim is to produce a systematic review of qualitative studies that have examined residents' views of QoL. Specifically, it aims to identify and summarise the factors that positively influence care home life, and provide an evidence base of practical recommendations to improve QoL.

Inclusion criteria

English language studies of mixed methodology but including qualitative research methods as described below.

The views of residents in a care home. Care home refers to nursing and residential homes. Accommodation described as community villages, supported living or respite stays were excluded.

Studies had to examine factors that contribute to care home life.

Qualitative research is broadly defined as ‘any kind of research that produces findings not arrived at by means of statistical procedures or other means of quantification’ [12, p. 17]. We excluded studies of personal narratives and stories that lacked data analysis, as some classify them as ‘no finding reports' [13, 14].

Search strategy

The following bibliographic databases were searched: PsycINFO (1887-April 2009), Medline (1966-April 2009), Web of Science (1982-March 2010), EMBASE (1980-March 2010), Allied and Complementary Medicine Database (1985-Jan 2011) and Cumulative Index to Nursing and Allied Health Literature (l982-March 2010). As there are no gold standard methodological filters in Medline for ‘qualitative research’, consultation was sought from key literature [15]. We used medical subject headings (MESH) and freetext searches related to care/nursing homes and QoL. MESH terms were exploded and combined. Proven search strategies for PsycINFO for finding qualitative research were used [16]. For other search strategies, please see Appendix 1 in the Supplementary data available in Age and Ageing online .

References from all appropriate journals and individual articles were also checked and relevant articles were retrieved. Figure  1 shows the flow of the study retrieval.

Flow diagram of study retrieval.

Data extraction and quality assessment

Papers were screened for relevance from the title and abstract. Participant details, recruitment methods, qualitative methods, setting and study data (i.e. participant quotes and author summaries) were extracted. Where there were insufficient details in the abstract, full papers were retrieved. For study quality, papers received a score out of 7 for its methodological rigour by establishing the inclusion of:

an explicit framework and/or literature review;

clear aims and objectives;

description of context so the reader could relate the findings to other settings;

clear description of sample with basic descriptive data;

clear description of data analysis methods taking into account audit trails, searching for disconfirming cases and identification of themes;

reliability and validity taking into account confidentiality, consent procedures, credibility checks and data triangulation methods;

sufficient original data to mediate between evidence and interpretation to allow the appraisal of the fit between the data and authors' understanding [17–20]. We did not exclude any qualitative studies as poor reporting of methods does not necessarily imply poorly conducted research [21]. All papers were assessed independently for quality and disagreements resolved by the research team.

Data synthesis

For the data synthesis, we followed a thematic analysis approach [ 22 ] with a number of features adopted from the literature on meta-ethnography [23]. The acts of synthesising and reviewing qualitative research are still unclear. However, by using the earliest published work on qualitative synthesis [23], we utilised an established research method of systematic comparison of studies [23] and employed ‘thematic analysis’ in order to formalise the identification and development of themes [ 22 ].

First, each study was repeatedly read and findings highlighted on a line by line coding of data. For more details, please see Appendix 2 in the Supplementary data available in Age and Ageing online .

Codes were organised in Microsoft Excel, allowing similarities and differences between studies to be identified easily. Towards the end of analysis, diagrams identified links and inter-relationships among categories, to develop themes and subthemes. The final step went beyond the content of the data and themes identified, analysing data in a way that offered an, ‘interpretive explanation through which the meanings of social phenomena are revealed’ [23]. This stage is the most difficult to describe, since it is dependent on the insights of the reviewers, and the inference of additional concepts, understandings or hypotheses as generated from the data.

Literature search and study descriptions

We identified 1,048 papers, and 31 papers [ 24 , 54 ] fulfilled the inclusion criteria (see Figure  1 ). The synthesis of findings involved 1,223 participants aged from 20 to 100 (see Table  1 ). There were 29 studies of older residents, 1 in people with multiple sclerosis [ 49 ] and 1 did not offer any age-related information [ 35 ]. Four homes specifically stated that people with dementia resided in the homes [ 31 , 34 , 41 , 42 ]; one study was multisited and included homes specialising in Alzheimer's disease [ 25 ]. Nine [ 26 , 27 , 33 , 37–39 , 43 , 49 , 50 ] included residents with mixed cognitive and physical abilities, and 17 [ 24 , 28–30 , 32 , 35 , 36 , 40 , 44–48 , 51–54 ] did not report the residents' cognitive or physical abilities. Ethnicity was reported by 12 and 27 used in-depth/semi-structured interviews. Studies covered a range of epistemological perspectives (grounded theory, content analysis, thematic analysis etc). This methodology fulfils the goal of qualitative synthesis: ‘to produce a new and integrative interpretation of findings that is more substantive than those resulting from individual investigations’ [55].

Descriptive details of studies in review

In terms of study quality, only 8 [ 25 , 27 , 29 , 33 , 44 , 49 , 52 , 53 ] met all 7 quality criteria and 17 [ 24–27 , 29–33 , 36 , 38 , 40 , 44 , 49 , 51–53 ] met both criteria evaluating reliability and validity. Sensitivity analyses (calculating the contribution of each study to the four themes) according to the quality rating score, showed all findings contributed to key themes irrespective of score (contact author for further details). In terms of generalisability, studies from two countries had poor quality scores [ 28 , 34 ].

Acceptance and adaptation to their living situation

Acceptance of one's living situation resulted in a more positive outlook (see Table  2 for resident quotes and Table  3 for themes) [ 25 , 27 , 30–33 , 35 , 37 , 41 , 44 , 46–49 , 51 , 53 , 54 ]. A positive attitude was found to reduce the impact of losses, e.g. with dependency [ 27 , 35 , 41 , 42 , 46 , 51 , 53 ]. Those with positive attitudes reported behaviours that helped preserve their independence [ 25 , 35 , 48 , 49 , 53 ]. Maintaining independence meant making their own decisions [ 25 ], or doing simple tasks [ 35 , 53 ]. Being positive also enabled resilience in adapting to shared surroundings [ 27 , 31 , 35 , 41 , 42 , 46 , 51 , 53 , 54 ]. This resilience supported their sense of self-efficacy, allowing them to thrive in the care home, quote 1 [ 51 ]. However, accepting care home life requires both positivity and a strong sense of self and awareness, quote 2 [ 46 ].

Resident quotes for each of the key themes

The contribution of key themes from each study

x* = not mentioned.

Acceptance enabled a strengthening of internal resources [ 27 , 41 , 44 , 46 , 49 , 53 ], which may contribute to living well in care homes, despite restraints. Residents reported actively making decisions to adapt certain behaviours in order to lead a good life, quote 3 [ 53 ].

Connectedness with others

Connectedness and involvement with others ( n  = 21 studies) was integral for good care home life [ 24–27 , 48 , 31 , 33–35 , 38 , 40–42 , 44 , 45 , 48–50 , 52–54 ]. These connections represented social ties that either reinforced acceptance or distanced residents from care home life. Having peer residents contributed to friendships [ 25 , 33 , 49 , 50 ], belonging [ 25 , 32 , 35 , 37 ] and reassurance of being important to others [ 25 , 27 , 31 , 33 , 46 , 50 ]. Lack of peer residents impinged on privacy, loneliness, boredom, autonomy and self-identity. Less impaired residents described withdrawing from relationships with other residents to maintain privacy [ 38–41 , 52 ]. However, this led to loneliness and isolation, quote 4 [ 52 ]. Privacy was also affected by more impaired residents coming into their room unannounced or taking their possessions [ 37 , 41 , 52 ]. A lack of peer residents was seen as a reflection of how ‘far they had fallen’, a representation of their reduced circumstances [ 32 , 37 , 38 , 49 , 52 ]. Thus, close relationships with peer residents contribute greatly to connectedness within the care home.

A reciprocal relationship with staff also contributed to good care home life. Where staff provided emotional or psychosocial care, e.g. by sharing their own life, quote 5 [ 26 ], residents reported this affirmed respect and feeling of worth [ 24 , 26 , 32 , 33 , 35 , 38 , 42 ].

The final aspect regarding connectedness revolved around changes in the resident–family relationship. For some the care home served to relinquish any feelings of burden [ 25 , 30 , 31 , 35 , 46 , 49 ], representing a sense of freedom and a way to re-establish familial roles, quote 6 [ 25 ]. For others, the care home represented a place to regain some independence [ 46 ].

A homelike environment

The majority of studies reported that factors within the care home environment facilitated acceptance [ 25 , 27 , 29 , 30 , 32 , 33 , 35 , 36 , 39 , 40 , 42–45 , 48 , 49 , 52 , 54 ]. A homely physical environment [ 25 , 27 , 29 , 32 , 33 , 35 , 39 , 40 , 42–44 , 48 , 49 , 52 ] ensured continuation of their QoL, allowing a smoother transition from home to care home. Having one's own room and bathroom, enough storage and a quiet place [ 35 , 37 , 39–41 , 45 , 48 , 51 ], facilitated residents' abilities to exercise control, quote 7 [ 27 ]. When a homelike environment is absent, quote 8 [ 45 ] a sense of institutionalised living occurs [ 29 , 31 , 32 , 37 , 39 , 42 , 51 , 52 ]. The home is described as regimented and restricted, where daily life is routine and boring [ 30 , 32 , 40 , 42 , 45 , 46 , 51–53 ].

Meaningful daily life, characterised by the care home providing opportunities to go out [ 27 , 42 , 53 , 54 ] and appropriate activities [ 35 , 40 , 42 , 49 ] influenced QoL by allowing autonomy. Care homes providing variety in how residents spent their day, allowed greater feelings of control [ 25 , 28 , 29 , 32 , 35 , 40 , 45 ], preventing helplessness, quote 9 [ 49 ]. A meaningful daily life and homelike environment both emphasise the importance of the care home as a home, recognised in conjunction with the care home as a place that also provides care.

Caring practices

How care is provided has a significant influence on resident's experiences [ 24–29 , 32 , 33 , 35 , 37 , 39 , 44 , 46–49 , 52 ]. Residents needed to feel their needs were adequately met without carers rushing off to the next task [ 24 , 28 , 29 , 35 , 37 , 46 , 48 ], as this can leave residents feeling vulnerable [ 33 , 39 , 46 , 48 ] and helpless, quote 10 [ 33 ].

Carers' competence and caring attitude, quote 11 [ 26 ], can contribute to positive care home experiences [ 24–27 , 35 , 39 , 40 , 46 , 47 , 49 ]. Carers who knew their residents [ 24 , 26 , 27 , 48 , 49 ] and their personal needs [ 26 , 27 , 41 ], and had an understanding of their life story [ 24 , 33 , 48 ] helped residents to be seen as both the person they are and once were, fostering their self-worth, quote 12 [ 42 ]. Residents also reported that feeling safe [ 27 , 35 , 41 , 43 , 46 , 51 , 52 ] combined with staff continuity [ 27 , 32 , 33 , 49 ] led to rapport and trust, ensuring a feeling of attachment [ 27 , 32 , 33 , 49 , 50 ].

This systematic thematic review found four key themes that affect good QoL in care homes: acceptance and adaptation, connectedness, homelike environment and caring practices. In particular, the theme caring practices echoes previous research where care home resource constraints affect older peoples' QoL, and where quality of care is still the caregiver's primary concern [ 10 , 55]. This review also supports and extends the finding that a positive approach to living in care homes is associated with effective coping and adaptation [56]. More importantly, this review is the first, to our knowledge, to provide a synthesis of qualitative studies of various groups of people living in care homes.

Moving to a care home can change a person's ‘psycho-physical’ balance [57], resulting in feelings of worthlessness and uselessness [58]. The first theme, ‘acceptance and adaptation’, demonstrated the importance of residents' own attitudes, where residents taking an active stance in daily living felt more control of their lives [ 26 ]. This is supported by literature on older people, where adaptation in the face of changes was essential for a ‘feeling of anchorage to life’ [59]. For residents in care homes, a response shift [60] may occur, where those who constantly appraised their interactions with others and their environment, explicitly addressed changes they had to make in order to adapt effectively to their new lives. Whether this is due to changing expectations with age, or adaptability in the face of significant changes is difficult to ascertain, and further research is needed. Our findings suggest that carers can promote successful adjustment by communicating the impact of ‘institutional’ living on residents, and, providing a positive mindset. The second theme, ‘connectedness with others,’ demonstrates the importance of appropriate peer relationships [ 35 ]. This is also supported by studies on older people where the quantity and quality of social engagement were found to prolong a person's life [61].

A homelike environment where carers treat residents with respect, taking into account their individuality and identity [59], can reduce the impact of ‘institutionalisation’ [ 10 , 62]. In care homes, routines are often designed to maximise the quality of care, with little room for negotiation and individualised care. However, when some control was given to residents, this contributed to a sense of well-being. Even the illusion of perceived control [63] can help an individual to interact successfully with their environment. However, while competent carers are important, considerate care is equally important [64], and promoting autonomy and independence depends on the nature of the caring relationship between staff and residents.

Methodological issues

Many studies ( n  = 11) reported that staff identified suitable participants, and provided little information regarding who carried out the research. Thus response, gender and selection biases may have occurred. Only a third of studies reported residents' ethnicities, although residents' race is related to QoL [65].

Almost three-quarters of people in care homes have dementia [66], yet few studies have qualitatively assessed QoL in this population. Cognitively impaired individuals are seen as vulnerable and incapable of making decisions [67]. However, the studies reviewed demonstrate that people with dementia can voice their concerns [ 31 , 34 ], echoing findings in acute care setting [68]. Thus more research is needed in this client group.

Only 17 studies in this review adequately reported recruitment methods and descriptions of care homes. This raises concerns about the generalisability of findings. Research has shown, for example, that care homes in rural areas are more comfortable, and that private facilities provide better dignity, security and lower levels of dissatisfaction [69, 70].

Strengths and limitations of the review

We used available qualitative methodological checklists for evaluating study quality, and synthesised findings using an established method to consider the original theoretical perspective of each study and authors' interpretations. We also contacted authors where information was missing. However, not searching the grey literature and limiting studies to English may have excluded some relevant literature.

Future research

Only three studies included the views of younger residents i.e. <65 years of age. Some previous studies report no age differences in residents' QoL [71], while others report [65] better QoL in older residents. QoL domains may also vary in priority according to age [67]. However, the findings from a review of social discourse with younger care home residents with neurological and physical disabilities paralleled many of our key findings, e.g. the importance of peer residents and staff relationship reciprocity [72].

As demonstrated with the four key themes of this review, a relationship-centred approach to care [ 73 ] is highly desired by residents. However, this requires the well-being of both staff and residents, and an examination of the philosophy and values of the administration as these will undoubtedly affect the psychological milieu (or well-being) of all who live and work there [ 45 ]. This review did not look at the influence of care homes' mission statements on QoL. Evidence suggests care home workers may view QoL differently from the mission statements [74].

We acknowledge that there are enormous economic, social and cultural barriers that militate against the easy operationalisation of our recommendations. The reasons behind these barriers were not the explicit focus of our review, and are beyond the scope of this paper. However, these seem to be centred on the issues of lack of staff, training and supervision [ 33 , 45 , 46 ]. Nevertheless, further qualitative reviews that specifically focus on the barriers to adopting these recommendations may address these issues more explicitly. Furthermore, although we have limited our recommendations to those that directly link in with our main findings, a qualitative study that specifically examines recommendations from the perspectives of service users, staff and others involved in service delivery is useful, and may address these issues more directly.

This is the first systematic thematic review consolidating the views of people in care homes. For good QoL in care homes, there needs to be an understanding of the residents' attitudes towards living there, and how factors within the care home impact upon their attitude. This echoes quantitative research where psychological functioning and social support were most strongly correlated to resident satisfaction [64]. Care homes need to make allowances to the care home environment to more closely align with residents' personal preferences and meanings [ 73 ], e.g. match compatibility of roommates to promote meaningful engagement [75]. Care staff providing both practical and emotional support can enhance residents' QoL. Organisational policies need to support this by maintaining continuity of care and less rigid time schedules and routines [ 45 ]. Capabilities of residents must be promoted and valued, to redefine the care home as one that promotes choice, not one that simply takes it away.

This is the first systematic thematic review of factors affecting good QoL in care homes.

For a good QoL in care homes, four key themes are necessary; the person's ‘acceptance and adaptation to their living situation’, their ‘connectedness’ with others, living in ‘a homelike environment’ and carers displaying ‘caring practices’.

Previous research shows that people with cognitive impairments can successfully self-report on their QoL [76]. More qualitative research is needed within this population, especially with people with dementia.

Care homes need to provide a ‘home’ that is person centred for each individual, using a carer relationship-centered approach that examines the personal preferences of each person to allow autonomy, self-identity and independence to be maintained.

This work was supported by a grant from the MS Society of Great Britain and Northern Ireland (Grant ref: 905/08).

We thank Ms. Stephanie Cheng for her assistance in assessing the study quality. We are grateful to the authors who responded to our requests for further information about their research.

The very long list of references supporting this review has meant that only the most important are listed here. The remaining references are available in Appendix 3 of Supplementary data at Age and Ageing online .

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Designing a safe and inclusive housing environment for older adults: assessment of nursing home preparedness for post-COVID era

• Published: 27 December 2023

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• Vesna Žegarac Leskovar 1 &
• Vanja Skalicky Klemenčič   ORCID: orcid.org/0000-0001-5516-2822 1  

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The main objective of the study is to verify whether architectural design elements affect mental and physical health from the perspective of nursing homes’ preparedness to face unpredictable situations, such as the COVID-19 pandemic, which gave rise to the need of rethinking the design of nursing homes to provide quality living environments that enable older adults to live healthy, safe, and socially inclusive lives. During the COVID-19 pandemic, nursing homes were among the most critical types of housing. Various safety measures were taken to protect the physical health of residents, which, at the same time, had a negative impact on their mental health, mainly due to isolation and social distancing. The current study was carried out using both quantitative and qualitative research methods. A literature review, a detailed analysis of selected nursing homes, an online survey of nursing home managers, and on-site work served as the basis for the development of the comprehensive design quality assessment tool “Safe and Connected”, which was further tested on four selected case studies. The cases were selected on the basis of seven independent variables, i.e. nursing home capacity, residential density, floor area, the year of construction and typology, purpose-built construction regarding use and location, and one dependent variable, i.e. nursing home infection rate. The assessment results of the SC tool were verified against two additional analyses: infection rate data and a resident quality of life survey. The results show the coincidence of the “Safe and Connected” design quality marks and rates of infected residents and quality of life survey results for the observed nursing homes. It can be concluded that the design of the residential environment is identified as one of the possible factors influencing the quality of life in nursing homes. Furthermore, understanding the architectural design elements involved in the perception of risks for, and well-being of, residents may be helpful for decision makers, managers, architects, and investors to make sensible decisions when planning and maintaining nursing home facilities in the post-COVID era.

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We would like to thank the assistant Katarina Kušar for help with conducting interviews with NH residents.

Funding for this research was partly provided by the Slovenian Research Agency, National research program P2-0129.

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Žegarac Leskovar, V., Skalicky Klemenčič, V. Designing a safe and inclusive housing environment for older adults: assessment of nursing home preparedness for post-COVID era. J Hous and the Built Environ (2023). https://doi.org/10.1007/s10901-023-10093-3

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A, Total direct care staffing hours each week (registered nurses [RNs], licensed practical nurses [LPNs], and certified nursing assistants [CNAs]) at participant facilities and compared with national trends. B, Hours per resident-day for total direct care staff (RNs, LPNs, and CNAs) at participant facilities and compared with national trends.

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Brazier JF , Geng F , Meehan A, et al. Examination of Staffing Shortages at US Nursing Homes During the COVID-19 Pandemic. JAMA Netw Open. 2023;6(7):e2325993. doi:10.1001/jamanetworkopen.2023.25993

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Examination of Staffing Shortages at US Nursing Homes During the COVID-19 Pandemic

• 1 Department of Health Services, Policy & Practice, Brown University School of Public Health, Providence, Rhode Island
• 2 Student, PhD Program in Health Policy, Harvard University, Cambridge Massachusetts
• 3 Department of Health Care Policy, Harvard Medical School, Boston, Massachusetts
• 4 Division of Geriatrics and Aging, Department of Medicine, University of Rochester Medical Center, Rochester, New York

Question   Do nursing home administrator perspectives on staffing in US nursing homes during the COVID-19 pandemic provide context for conflicting staffing data reports?

Findings   In this study, qualitative and quantitative data from 40 US nursing homes were integrated to assess staffing levels during the pandemic. Short-term compensatory strategies were used by administrators to comply with minimum staffing regulations and offset staffing shortages.

Meaning   Findings from this study suggest that staffing shortages during the COVID-19 pandemic placed strain on nursing homes.

Importance   Staffing shortages have been widely reported in US nursing homes during the COVID-19 pandemic, but traditional quantitative research analyses have found mixed evidence of staffing shortfalls.

Objective   To examine whether nursing home administrator perspectives can provide context for conflicting aggregate staffing reports in US nursing homes during the COVID-19 pandemic.

Design, Setting, and Participants   In a qualitative study, convergent mixed-methods analysis integrating qualitative and quantitative data sets was used. Semistructured qualitative interviews were conducted between July 14, 2020, and December 16, 2021. Publicly available national Payroll Based Journal data were retrieved from January 1, 2020, to September 30, 2022, on 40 US nursing homes in 8 health care markets that varied by region and nursing home use patterns. Staffing and resident measures were derived from Payroll Based Journal data and compared with national trends for 15 436 US nursing homes. Nursing home administrators were recruited for interviews. Of the 40 administrators who consented to participate, 4 were lost to follow-up.

Exposure   Four repeated, semistructured qualitative interviews with participants were conducted. Interview questions focused on the changes noted during the COVID-19 pandemic in nursing homes.

Main Outcomes and Measures   Thematic description of nursing home administrator compensatory strategies to provide context for quantitative analyses on nursing home staffing levels during the COVID-19 pandemic.

Results   A total of 156 interviews were completed with 40 nursing home administrators. Administrators reported experiencing staff shortages during the COVID-19 pandemic and using compensatory strategies, such as overtime, cross-training, staff-to-resident ratio adjustments, use of agency staff, and curtailing admissions, to maintain operations and comply with minimum staffing regulations. Payroll Based Journal data measures graphed from January 1, 2020, to September 30, 2022, supported administrator reports showing that study facilities had reductions in staff hours, increased use of agency staff, and decreased resident census. Findings were similar to national trends.

Conclusions and Relevance   In this qualitative, convergent mixed-methods study, nursing home administrators reported the major staffing strain they experienced at their facilities and the strategies they used to offset staffing shortages. Their experiences provide context to quantitative analyses on aggregate nursing home census data. The short-term compensatory measures administrators used to comply with regulations and maintain operations may be detrimental to the long-term stability of this workforce.

The COVID-19 pandemic has put tremendous strain on the US nursing home workforce. 1 - 3 Burnout, 4 , 5 low wages, 6 poor work conditions, 7 and the increased burden of caring for vulnerable residents during a health crisis 3 , 8 have contributed to a 13.3% decrease in nursing home sector employment since the start of the pandemic. 9 Nursing homes currently employ 1.37 million workers (roughly 10% below projected demand) 9 and continue to face staff shortages. 10 , 11 Administrators have responded to ongoing staff shortages by increasing staff workloads, 12 , 13 halting or decreasing new admissions, 14 - 16 and offering substantial wage raises 10 , 17 and other incentives to retain staff. 18 Despite these efforts, only 2% of all nursing homes in the US reported being fully staffed in 2022. 19 , 20

Although staff shortages at nursing homes have been widely reported, 12 , 18 , 19 , 21 quantitative studies have found mixed evidence of staffing shortfalls. One study found no decrease in staffing levels during the early part of the pandemic after accounting for a decreased census. 22 The Kaiser Family Foundation reported that nursing home staffing shortages coincided with COVID-19 variant surges, varied widely by state, and peaked in January 2022 at 34%. 11 In contrast, an analysis that used detailed employee-level payroll data found staffing patterns consistent with reports of nursing homes experiencing major staffing challenges during severe COVID-19 outbreaks and for extended periods of time after the outbreak. 23

This study conducted a qualitative assessment of nursing home administrator experiences during the pandemic and integrated qualitative findings with quantitative analysis of national payroll staffing data. The objective was to provide context to conflicting aggregated data on nursing home staffing levels during the COVID-19 pandemic.

This convergent mixed-methods study 24 - 26 used semistructured qualitative interviews with nursing home administrators and merged thematic results with quantitative analyses of publicly available facility-level staffing data. This project followed the Consolidated Criteria for Reporting Qualitative Research ( COREQ ) reporting guideline for qualitative research and was approved by the Brown University Institutional Review Board, which determined it to not be human research. Verbal consent was obtained prior to audiorecording interviews. The nursing home administrators received compensation for participation.

Using the Hospital Referral Region table from the Centers for Medicare & Medicaid Services Geographic Variation Public Use file, 8 health care markets were identified. 27 Markets varied based on US region and nursing home use patterns. Using purposive sampling, 5 nursing homes that varied by 5-star rating, size, payer mix, and profit status were selected in each market. 28 Administrators were recruited by email and telephone to participate in semistructured interviews. Interviews were repeated at 3-month intervals from July 14, 2020, to December 16, 2021, to understand the outcomes associated with COVID-19 in US nursing homes over time.

Interview protocol development and testing consisted of 3 cognitive interviews with the immediate research team and 3 pilot interviews with nursing home administrators, after which final revisions to the interview guide were made. The interview guide included open-ended questions and subsequent probes about COVID-19 at nursing homes and was used as a baseline across all 4 interviews, with modifications to add or discontinue questions as needed. Interview guides for interviews 2 and 3 included follow-up questions specific to the facility’s previous interview. A summary report detailing preliminary findings and emerging themes was sent to participants before their third interview. During the third interview, targeted questions were asked to solicit feedback on the summary report, confirm preliminary findings, and refine emerging themes. The interview guide for interview 4 was further modified to include questions designed to look back on administrator experiences over the 1-year interview time frame (eMethods in Supplement 1 ).

Four qualitative research team members (J.F.B., A.M., R.R.S., and E.A.G.) conducted the interviews. All were women with 5 to 35 years of experience in conducting qualitative research. They included 2 PhD-level faculty members and 2 Master’s-level research staff. The researchers did not know the interview participants before the first interview. The purpose of the research was shared with interview participants during recruitment and at the start of each interview.

Interviews were conducted virtually or by telephone depending on participant preference and lasted approximately 60 minutes. Two qualitative research team members participated in each interview: one conducted the interview while the other took detailed notes to flag questions for follow-up and record emergent themes.

Interviews were recorded, professionally transcribed verbatim, deidentified, and reviewed for accuracy. Transcripts were not shared with participants. Using modified grounded theory, 29 an initial coding scheme was developed based on the interview guide (a priori codes) and on emerging data from interviews (de novo codes). The coding tree was adjusted iteratively, such that codes were added and refined throughout data collection and analysis. Four researchers (J.F.B., A.M., R.R.S., and E.A.G.) double-coded 102 interview transcripts in coding teams of 2. Teams rotated to ensure rigor and prevent drift in code definition understanding. Preliminary emerging themes were identified and noted in an audit trail. Once high coding agreement was reached, 54 transcripts were coded by individual researchers. Coded transcript data were entered into the qualitative software package NVivo, version 12 Plus (QSR International) to facilitate comparative analyses across themes.

Once all interview transcripts were coded, reports were generated that collected all the quotations assigned to the same code and related to an identified preliminary theme. Using the 6 steps devised by Braun and Clarke for thematic analysis, 30 the code reports related to a theme were examined together and reanalyzed to identify quotations that were both supportive of and in contrast to the identified themes and identify additional themes. It was determined that saturation was achieved. 31 During analysis, a comprehensive audit trail 32 was kept to record team decisions, questions and comments, code definitions, and emerging themes.

Daily facility-level staffing data for January 1, 2020, to September 30, 2022, were obtained from the publicly available Centers for Medicare & Medicaid Services Long-term Care Facility Staffing Payroll Based Journal (PBJ) data. 33 All Medicare- or Medicaid-certified nursing homes are required to submit daily staffing data, which includes hours worked by staff type and contract type (ie, agency vs direct employee) and resident census. To construct national averages for comparison, data for the 40 sample nursing homes and all 15 436 nursing homes in the US were obtained.

The PBJ data were used to construct 4 measures between January 2020 and September 2022. Measure 1: the mean total daily direct care staff including registered nurses (RNs), licensed practical nurses (LPNs), and certified nursing assistants (CNAs) in any given week; measure 2: the mean daily resident census in any given week; measure 3: direct care hours per resident-day, calculated by dividing total hours by patient census on that day 34 ; and measure 4: the share of agency worker hours (rather than direct care employees) that provide temporary staffing to offset potential shortages of RNs, LPNs, and CNAs. The staffing measures provide insights into the adequacy of staffing levels and quality of care during the study period. The share of agency worker hours measure is an indicator of staffing stability and may reflect challenges in recruiting and retaining direct care employees.

Weekly means for the 4 measures for the 40 participating nursing homes and 15 436 nursing homes nationally were calculated. These averages were graphed over time to examine temporal trends in the study sample and compared with national trends for the same time period. To construct the national average for each measure, data were weighted by the size of the nursing home, as measured by the number of residents. To ensure the accuracy of our analyses, any data points with either the resident census or the total staffing reported as 0 for a facility on any given day were excluded.

Qualitative and quantitative data sets were integrated to answer the question, Do nursing home administrator perspectives on staffing in US nursing homes during the COVID-19 pandemic provide context for conflicting staffing data reports? The 3 themes generated by qualitative analysis prompted the development of 4 analytic measures to statistically evaluate facility-level data for the study sample. Qualitative themes were compared with quantitative measures to assess whether administrator experiences with nursing home staffing levels were supported by facility-level data and whether administrator perspectives provided an explanation for how staffing challenges were addressed.

This mixed-methods study included 156 total interviews with 40 nursing home administrators in 8 markets across the US. Although specific demographic information was not gathered, participants were licensed nursing home administrators who self-reported a range of education levels and backgrounds, including nursing, social work, business administration, health care administration, public administration, finance, and marketing. Experience in nursing homes ranged from several months to more than 30 years. Nursing home characteristics are presented in Table 1 .

Using modified grounded theory 29 and thematic analysis, 30 3 major themes that reflect administrator perspectives on nursing home staffing from July 14, 2020, to December 16, 2021, were identified. In theme 1, administrators report on the substantial staffing shortages they experienced during the pandemic. Themes 2 and 3 present major strategies administrators used to offset immediate staffing shortages including hiring agency staff (theme 2) and operating at a reduced resident census (theme 3). Embedded within each theme are concepts that support the theme. Themes, concepts, and illustrative quotations are summarized in Table 2 .

Quantitative analysis of facility-level staffing data assessed changes found in the study sample of nursing homes from January 1, 2020, to September 30, 2022. In measure 1, study nursing homes experienced large reductions in total direct care staff hours throughout the study period ( Figure 1 A). Measure 2 showed that study nursing homes experienced reductions in direct care staff hours per resident-day throughout the study period ( Figure 1 B). Measure 3 indicated that the census at study nursing homes decreased substantially from March 1, 2020, to January 1, 2021 ( Figure 2 ). Measure 4 analyses showed that study nursing homes increased their use of agency staff for all levels of direct care throughout the study period ( Figure 3 ). As a validity check, quantitative results for measures 1 through 4 were compared with the same measures developed for the national sample of 15 436 nursing homes. Changes found for measures 1 to 4 in the study sample of nursing homes were comparable to national changes ( Figure 1 , Figure 2 , and Figure 3 ).

Thematic results from qualitative analysis were merged and compared with the quantitative results of facility-level staffing data measures. Theme 1 results were evaluated against measures 1 and 2 findings, theme 2 was assessed by measure 4 findings, and theme 3 was evaluated by measure 3 for evidence of agreement.

One administrator reflected on the challenge of finding staff throughout the pandemic: “With that many staff members out [due to COVID-19 infection], we had an extreme staffing crisis. There was nobody to help.” (S5N1.3, March 2021). Administrators described an ongoing struggle to maintain safe staff-to-resident ratios, “be in compliance when it comes to staffing” (S6N4.3, June 2021), and provide “good customer service” (S2N4.4, August 2021). Since nursing homes are required to maintain compliance with state and federal regulations around safe staff-to-patient ratios, administrators used compensatory strategies, such as overtime, cross-training, and increasing staff-to-resident ratios to balance regulatory requirements with staffing shortfalls at their facilities. Table 2 , theme 1, provides representative quotations.

Using PBJ data to assess staff hours per resident-day per week, our analyses substantiate the qualitative findings indicating that nursing homes faced staffing challenges during the COVID-19 pandemic (theme 1). In support of theme 1, our analyses showed a decrease in total direct care staffing hours for study sample nursing homes throughout the study period (July 14, 2020, to December 16, 2021) (measure 1). As noted in theme 1, administrators used various strategies to compensate for staff shortages and remain in regulatory compliance. Measure 2 analyses of staff hours per resident-day support administrator reports and show an increase of staff hours per resident-day at the outset of the pandemic. The impact of staff shortages extended beyond a facility-wide COVID-19 outbreak with staff hours per resident-day decreasing over time. This was evident at the facilities composing our study sample which, although slightly higher than the national trend, followed the national trend trajectory through December 2021. We continued our analyses through 2022 and found the facilities in our study sample followed national trends but at a higher rate ( Figure 1 A, B).

To compensate for staffing shortages, many nursing home administrators brought in agency staff to maintain facility functionality and meet regulatory compliance requirements. As one administrator noted: “We’re still utilizing agency, and all of that to be able to keep the building staffed according to the guidelines” (S6N4.4, September 2021). For some administrators, it was the first time (S2N4.2, February 2021) they had ever needed to rely on agency staff. Hiring agency staff proved problematic during the pandemic as the demand for agency staff soared due to competition with hospitals and other health care settings. As a result, administrators found that agencies could demand high payments for service that was often unreliable. Administrators expressed concerns about the prioritization by agency staff of monetary reward, which negatively impacted existing staff morale and resident care. Table 2 , theme 2 presents representative quotations.

Our quantitative analyses using PBJ data support our qualitative findings that nursing home administrators hired agency staff to manage staffing shortages at all levels of patient care (measure 3). Quantitative analyses showed a corresponding change of increasing agency use in both our sample of 40 nursing homes and nationally throughout the study period (July 14, 2020, to December 16, 2021), and continuing in 2022. Additionally, our analyses reflect the increase in agency use by nursing homes for all levels of nursing staff: RNs, LPNs, and CNAs. For our study sample, agency RNs were increasingly used over the course of the study period but at a lower rate than the national average; LPN and CNA agency staff, however, were used at rates higher than national averages by the 40 nursing homes in our study ( Figure 2 ).

A longer-term impact of staff shortages was nursing homes being unable to increase their admissions and census. As one administrator noted: “Yeah, the only restraint on us getting a little bit higher census is staffing issues. We’re running into staffing issues” (S5N2.4, July 2021). For many administrators, low staffing levels impacted their ability to increase their resident census. Thus, curtailing admissions was their only recourse until additional staff could be hired. Table 2 , theme 3, presents representative quotations.

Analyses of PBJ data substantiated administrator reports of a decrease in resident census (theme 3). Our analyses (measure 3) found that the number of nursing home residents in our study sample decreased substantially in March 2020 and continued to decrease through January 2021—a trend also found nationally. As nursing home administrators reported, resident census increased through 2022 but, at the time of the study, had not yet reached prepandemic levels ( Figure 3 ).

This study of nursing home administrator perspectives and facility-level staffing data aimed to address a critical gap in understanding how nursing homes met minimum staffing levels and remained operational while experiencing substantial staffing shortages. Using both quantitative and qualitative data, this study may help illuminate crucial ways nursing homes have dealt with the pandemic with 3 important findings.

First, while aggregate staffing and resident census data suggest that resident-to-staff ratios remained stable in the earlier part of the pandemic as a result of the decreasing resident census, our qualitative data provide an important explanatory context not shown by these analyses. Administrators used crisis management compensatory strategies to meet regulatory staffing minimums and maintain operations. As administrators noted, increasing resident-to-staff ratios, hiring agency staff, and reducing resident census enabled them to comply with regulations and continue to care for residents.

Second, although the compensatory strategies administrators used addressed an immediate staffing crisis created by the pandemic, these measures came with a financial cost. Increased staff overtime pay, the high cost of agency staff, and the decreased revenue from new resident admissions has had major financial influences on nursing homes already coping with high operational costs due to the pandemic. 35 - 37

Third, the stop-gap compensatory mechanisms administrators used to maintain operations have only exacerbated staff burnout. Not only have staff had to manage higher caseloads, they have had the additional burden of supervising and training temporary agency staff unfamiliar with facility protocols. This raises concerns for quality of care at nursing homes as staff burnout and high turnover 38 , 39 have been reported to be associated with poor resident outcomes. 40 - 42

Staffing ratios alone are an incomplete picture of the staffing environment in nursing homes, particularly in the midst of a public health crisis. It took an immense effort with substantial financial and staff costs for nursing homes to maintain minimally adequate staffing ratios and remain operational during the pandemic. The long-term consequences of these compensatory strategies will likely greatly affect the stability of an already strained workforce. 9

This study has several limitations. First, although our sample size of 40 nursing home administrators in 8 health care markets is robust for qualitative research, our findings may not be generalizable to all US markets and all nursing homes. Our quantitative analyses for facilities participating in this study, however, showed trends that were consistent with national trends. Second, while quantitative analyses continued through September 2022 and show trends continuing, our interviews were conducted between July 14, 2020, and December 16, 2021. Although we were able to capture administrator perspectives close to the beginning of the pandemic, we were not able to explore administrator perspectives into 2022. Third, our interviews focused on nursing home administrator perspectives, which may not represent staff perceptions as they responded to the loss of colleagues and patients, increased workloads, and the influx of agency help.

Findings from this qualitative mixed-methods study may have implications for future research and policy. The dual approach of quantitative and qualitative analyses provides depth and context to our understanding of complex topics such as staffing and nursing home care. It remains unclear how long the crisis adaptation techniques nursing home administrators used can persist without major effects on staff and resident safety. More mixed-methods research is needed to better understand the long-term outcomes of the COVID-19 pandemic associated with nursing home staffing and how policies and regulations around staffing during a crisis, such as a pandemic, have aided or limited the efficacy of administrator responses to maintain quality care for their residents. Policymakers should consider reviewing current nursing home regulations around staffing and work with nursing home administrators to create policies that more nimbly adjust to crisis management.

Accepted for Publication: June 15, 2023.

Published: July 27, 2023. doi:10.1001/jamanetworkopen.2023.25993

Open Access: This is an open access article distributed under the terms of the CC-BY License . © 2023 Brazier JF et al. JAMA Network Open .

Corresponding Author: Joan F. Brazier, MS, Brown University School of Public Health, 121 S Main St, Box 6, Providence, RI 02903 ( [email protected] ).

Author Contributions: Ms Brazier and Dr Gadbois had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.

Concept and design: Brazier, Meehan, White, McGarry, Shield, Rahman, Gadbois.

Acquisition, analysis, or interpretation of data: Brazier, Geng, Meehan, McGarry, Shield, Grabowski, Rahman, Santostefano, Gadbois.

Drafting of the manuscript: Brazier, Meehan, Rahman.

Critical review of the manuscript for important intellectual content: Meehan.

Statistical analysis: Geng, McGarry, Santostefano, Gadbois.

Obtained funding: Rahman.

Administrative, technical, or material support: Brazier, Meehan, McGarry, Rahman, Santostefano, Gadbois.

Supervision: Shield, Grabowski, Rahman, Gadbois.

Conflict of Interest Disclosures: Dr Grabowski reported receiving personal fees from the AARP, Analysis Group, GRAIL LLC, and Medicare Payment Advisory Commission outside the submitted work. No other disclosures were reported.

Funding/Support: This work was supported by the Warren Alpert Foundation (D.C.G. and M.R.).

Role of the Funder/Sponsor: The Warren Alpert Foundation had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

Data Sharing Statement: See Supplement 2 .

Additional Contributions: Aseel Rafat (Brown University), provided substantial editorial contributions to this article; no financial compensation was provided.

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• Research article
• Open access
• Published: 12 March 2020

Elder abuse and neglect: an overlooked patient safety issue. A focus group study of nursing home leaders’ perceptions of elder abuse and neglect

• Janne Myhre   ORCID: orcid.org/0000-0001-8983-7998 1 ,
• Susan Saga 1 ,
• Wenche Malmedal 1 ,
• Joan Ostaszkiewicz 2 &
• Sigrid Nakrem 1  

BMC Health Services Research volume  20 , Article number:  199 ( 2020 ) Cite this article

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The definition and understanding of elder abuse and neglect in nursing homes can vary in different jurisdictions as well as among health care staff, researchers, family members and residents themselves. Different understandings of what constitutes abuse and its severity make it difficult to compare findings in the literature on elder abuse in nursing homes and complicate identification, reporting, and managing the problem. Knowledge about nursing home leaders’ perceptions of elder abuse and neglect is of particular interest since their understanding of the phenomenon will affect what they signal to staff as important to report and how they investigate adverse events to ensure residents’ safety. The aim of the study was to explore nursing home leaders’ perceptions of elder abuse and neglect.

A qualitative exploratory study with six focus group interviews with 28 nursing home leaders in the role of care managers was conducted. Nursing home leaders’ perceptions of different types of abuse within different situations were explored. The constant comparative method was used to analyse the data.

The results of this study indicate that elder abuse and neglect are an overlooked patient safety issue. Three analytical categories emerged from the analyses: 1) Abuse from co-residents: ‘A normal part of nursing home life’; resident-to-resident aggression appeared to be so commonplace that care leaders perceived it as normal and had no strategy for handling it; 2) Abuse from relatives: ‘A private affair’; relatives with abusive behaviour visiting nursing homes residents was described as difficult and something that should be kept between the resident and the relatives; 3) Abuse from direct-care staff: ‘An unthinkable event’; staff-to-resident abuse was considered to be difficult to talk about and viewed as not being in accordance with the leaders’ trust in their employees.

Conclusions

Findings in the present study show that care managers lack awareness of elder abuse and neglect, and that elder abuse is an overlooked patient safety issue. The consequence is that nursing home residents are at risk of being harmed and distressed. Care managers lack knowledge and strategies to identify and adequately manage abuse and neglect in nursing homes.

Peer Review reports

Little is known about elder abuse in nursing homes, and compared to research on other forms of interpersonal abuse, research about elder abuse in nursing homes is still in its infancy [ 1 , 2 ]. Although no national prevalence data are available in any country internationally, high rates of elder abuse and neglect have been reported in nursing homes, including Norway [ 1 , 3 ]. According to the World Health Organisation (WHO), elder abuse has been identified in almost every country where these institutions exist [ 4 ]. In the Toronto Declaration, WHO defines elder abuse as ‘a single, or repeated act, or lack of appropriate action, occurring within any relationship where there is an expectation of trust which cause harm or distress to an older person’ [ 5 ] p:3. Prevention of harm is a core principle in health care services and a leadership responsibility [ 6 , 7 , 8 ]. Nursing home leaders are legally and morally responsible for ensuring that required quality and safety standards are met [ 6 , 9 , 10 ]. The National Patient Safety Foundation (United States) defines patient safety as ‘freedom from accidental or preventable injuries or harm produced by medical care’ [ 10 ], p,2. This includes preventing elder abuse and examining the factors that foster an unsafe environment for both residents and staff [ 6 , 7 , 11 ]. Furthermore, elder abuse can be categorized according to type of abuse. The definition from ‘Protecting Our Future: Report from the Working Group on Elder Abuse’ (Ireland) includes physical, psychological, financial and sexual abuse, and neglect (Table 2 ) [ 12 ]. Abuse in nursing homes may also be categorized according to type of relation [ 1 ]; staff-to-resident abuse [ 3 , 13 ], family-to-resident abuse [ 14 , 15 ] and resident-to-resident abuse, also called resident-to-resident aggression [ 16 , 17 ].

A recent meta-analysis of the prevalence of elder abuse in long-term care settings estimated a pooled prevalence of 64.2% of abuse perpetrated by staff in the past year, where psychological abuse and neglect had the highest prevalence [ 1 ]. A survey of 16 nursing homes in the central part of Norway found that 91% of staff had observed a colleague engaging in some form of inadequate care,

and 87% of staff reported that they themselves had perpetrated some form of inadequate care in the past [ 3 ]. Comparably, in a study from Ireland, Drennan et al. found that 57.5% of staff had observed one or more abusive behaviours from a colleague in the previous year [ 13 ]. Neglect and psychological abuse were the most commonly observed or perpetrated acts [ 3 , 13 ]. Living in a nursing home may also mean sharing room and space with co-residents, and in recent literature, resident-to-resident aggression has been identified as a common form of abuse in nursing homes [ 16 , 17 , 18 ]. Lachs and colleagues revealed that 407 of 2011 residents from ten facilities had experienced at least one resident-to-resident event over one month observation, showing a prevalence of 20.2%, and the most common form was verbal abuse [ 16 ]. The literature about elder abuse in domestic settings shows that close family and friends can be perpetrators of abuse [ 15 ], but few studies have investigated the role of family members as perpetrators of abuse in nursing homes. A study from the Czech Republic found that nursing home staff had observed relatives participating in financial exploitation combined with psychological pressure on residents in nursing homes [ 14 ]. However, comparing findings in the literature on elder abuse in nursing homes is challenging because definitions and understandings of abuse can vary in different cultures, jurisdictions, and among health care staff, researchers, family members, and residents themselves [ 1 , 2 , 11 , 19 , 20 , 21 ]. Different understandings of what constitutes abuse and its severity complicate detecting, reporting and managing the problem.

Nursing homes are complex social systems that consist of different participants, including staff, leaders, residents and relatives in constantly shifting interactions [ 22 , 23 ]. The aetiology of abuse in nursing home settings is described as complex, comprising varying associations between personal, social and organisational factors [ 2 , 24 ]. Nursing home residents often have complex care needs, dementia or other forms of cognitive impairment [ 25 ], display challenging behaviour [ 26 ], and depend on assistance in daily activities and care, all factors associated with a high risk of abuse and neglect [ 3 , 13 , 24 , 27 ]. In Norway, 80% of nursing home residents have dementia, and 75% have significant neuropsychiatric symptoms such as agitation, aggression, anxiety, depression, apathy and psychosis [ 25 ]. Residents who display aggressive behaviour toward staff are at greater risk of experiencing abuse [ 13 , 27 , 28 ]. Findings in Drennan et al.’s Irish study revealed that 85% of the nursing home staff had experienced a physical assault from a resident in the previous year [ 13 ]. Aggressive behaviour has also been found to trigger resident-to-resident aggression in nursing homes [ 16 , 17 ]. Related to organisational factors, there is an association between inappropriate environmental conditions for residents, low levels of staffing, and abuse and neglect [ 13 , 14 , 29 ]. As a result of this complexity, elder abuse in nursing homes is difficult to define precisely [ 11 ]. Within the literature, elder abuse in nursing homes is conceptualised as a specific form of institutional abuse [ 30 ] and a setting in which abuse and neglect take place [ 14 ], since rules and regulations in institutions can be abusive themselves, e.g., deciding residents’ sleeping and meal times, the use of restraint, and shared living spaces with other residents.

Good leadership plays a key role in developing staff’s understanding of residents’ needs [ 31 , 32 ] and creating a strong safety culture of respect, dignity, and quality [ 6 , 7 , 9 , 33 ]. The importance of leadership in developing a patient safety culture is highlighted in a report from the National Patient Safety Foundation [ 10 ]. In Norway, governmental strategies to improve leadership and safety culture have been launched, such as the Patient Safety Programme and a system for monitoring health services using quality indicators [ 34 ]. Leadership is defined as a process whereby a person influences a group of individuals to reach a common goal [ 35 ], such as a strong safety culture. The safety culture of an organisation is defined as ‘the product of individual and group values, attitudes, perceptions, competencies, and patterns of behaviour that determine the commitment to, and the style and proficiency of, an organisation’s health and safety management’ [ 10 , 36 ] p:23. This includes detecting situations that can be harmful to residents. However, several studies have shown that underreporting of abuse and neglect is a significant problem [ 1 , 37 , 38 ]. Residents’ own inability to communicate about the abuse or their fear of repercussions and retaliation are important factors of underreporting [ 1 , 2 ]. Therefore, staff should be able to recognise and report situations that can be perceived as harmful or distressful from the perspective of residents. However, a systematic review of staff’s conceptualisation of elder abuse in residential care found that staff were often uncertain about how to identify abuse, especially psychological abuse and caregiver abuse and neglect [ 39 ]. Despite the vast knowledge that exists about the importance of leadership, nursing home research has not yet paid much attention to the role leaders play regarding identifying elder abuse. Consequently, there is a gap in knowledge about elder abuse from the perspective of nursing home leaders. Knowledge about nursing home leaders’ perceptions of elder abuse and neglect are essential because their understanding of the phenomenon will affect what they signal to staff as important to report and what they investigate to create a safe and healthy environment. To our knowledge, this is the first study that seeks to understand the nature of elder abuse from the perspective of nursing home leaders.

Aim of the study

The aim of the study was to explore nursing home leaders’ perceptions of elder abuse and neglect.

The present study is part of a larger study funded by the Research Council of Norway (NFR), project number 262697. A qualitative exploratory design with focus group interviews was conducted to gain greater insight into this important but poorly understood topic. Qualitative methods provide knowledge about people’s experience of their situation and how they interpret, understand and link meaning to events [ 40 , 41 ]. In focus group interviews, group dynamics allow the questions to be discussed from several points of view, and the group’s dynamics can create new perspectives and opinions during the discussion [ 42 ]. This study follows The Consolidated Criteria For Reporting Qualitative Research (COREQ) (Additional file 1 ).

In Norway, approximately 39,600 residents live in nursing homes (12.9% of the population > 80 years), and their mean age is 85 years [ 43 ]. These nursing homes are mainly run by the municipalities and financed by taxes and service user fees. Residents pay an annual fee equal to 75% of the resident’s national age pension. In addition, residents may pay an additional fee if they have income of their assets, but with an upper limit decided by the government. However, the payment cannot exceed the actual expenses of the institutional stay [ 44 ].. Management of care in Norwegian nursing homes is regulated by ‘the regulation of management and quality improvement in health care services’ [ 45 ]. The regulation focusses on the leader’s responsibility to ensure that residents’ basic needs are satisfied. This includes the leader’s responsibility to ensure there is a system in place to monitor residents’ overall quality and safety and to create a safety culture that detects situations and factors that can cause harm to residents and staff [ 45 ].

Each nursing home is required to have an administrative manager, called the nursing home director, and some nursing home directors lead more than one facility. In addition, each nursing home has ward leaders and quality leaders, and in some municipalities, a service leader. Together, individuals in these leader roles form the leadership team in each nursing home [ 46 ]. The ward leader is a registered nurse (RN) who supervises and manages staff. Ward leaders are also responsible for budgets in their own wards and the quality of care for residents. There are often several wards and ward leaders in each nursing home. The quality leader is an RN who monitors the overall quality of care in the nursing home in collaboration with the ward leaders. The service leader supervises and manage service staff members who are in contact with nursing home residents (e.g., activity coordinators, cleaning staff and kitchen staff) and is also responsible for the budget related to his or her staff. Individuals employed in one of these leader positions provide the closest level of leadership to staff and residents but are not part of the daily direct hands-on care of residents. There is no national requirement regarding formal leader education to be employed in these leader positions, but leader education is a high priority in many municipalities. These individuals often have lengthy experience as RNs or have previous leader experience.

The study sample was recruited from 12 nursing homes in six municipalities in Norway. Inclusion criteria were a person who: (a) was employed in a leader position as ward leader, quality leader, or service leader in a nursing home, and (b) was employed full time in the leader position. The inclusion criteria were chosen because these individuals directly affect quality and safety in the nursing home, as they are the closest level of leadership to the staff and residents. Purposive sampling was initially used to ensure that participants recruited could see the phenomenon from the perspective of a leader. During the data collection, each municipality and its nursing home leaders were recruited using a step-wise approach, as we were seeking to get a theoretical sampling until saturation of data was achieved [ 40 , 41 ]. A total of 28 individuals participated in the study, 23 participants were ward leaders, two participants were quality leaders, and three participants were service leaders. However, in this study, all 28 participants are named ‘care managers’. Characteristics of the participants are presented in Table 1 .

Recruitment and data collection

Participants were recruited over a period of six months, from August 2018 through the end of January 2019. A recruitment email was sent to health care managers in 11 municipalities in both urban and rural areas. Health care managers from five municipalities stated that they could not find time to participate in the study, while six health care managers accepted the invitation. Thereafter, a second recruitment email was sent to all nursing home directors in these six municipalities. The email included an invitation letter, which the nursing home director forwarded to all individuals employed in a leader position at their nursing homes. Six focus group interviews were conducted, with three to six participants in each group. The focus groups were composed as follows: one focus group with three participants; two focus groups with four participants; one focus group with five participants; two focus groups with six participants.

All six focus group interviews took place in a meeting room in a nursing home in the participating municipalities. Each focus group interview lasted approximately 90 min. All participants gave informed written consent before the interviews started. Two researchers carried out the interviews. JM was the moderator in all six interviews, SN was co-moderator for two group interviews, and SS was co-moderator in one group interview. In the other three interviews, two researchers from the larger research team were co-moderators. During the introductory information about the focus group interview, we presented a figure (Fig. 1 ), and asked participants about their experience and thoughts on the topic of elder abuse from health care staff, co-residents or relatives. Participants were encouraged to speak freely. However, during the first interview, we experienced that participants were not familiar with the topic. To explore the topic in the ensuing interviews, the moderator gave the participants keywords from the categorization of abuse (e.g., abuse can be described as physical, psychological, sexual, financial, or neglect) (Table 2 ) [ 12 ]. We found that this helped the participants reflect, and they subsequently came up with examples of abusive situations they had heard about or witnessed. During the process of data collection, we further compared our experiences in interview one with interview two, which is in line with the constant comparative method [ 40 ]. This led to including keywords in the interview guide to ensure that all topics were covered (Additional fil 2). To ensure the credibility of an open thematic understanding of participants’ experiences and diminish bias by presenting the keywords, we were conscious about letting the participants speak freely about their experiences and thoughts on this topic. Moreover, they were not given any definition of abuse or examples related to these keywords (Table 2 ) [ 12 ]. The participants freely decided in which order they wanted to talk about different forms and situations of elder abuse. All interviews were recorded and transcribed verbatim, retaining pauses and emotional expressions.

Model of interactions where abuse can occur as used in the interviews

Data analysis

A constant comparative method with a grounded theory approach was used. This allowed us to generate a thematic understanding of elder abuse through an open exploration of the experience described by nursing home leaders [ 40 , 41 ]. The constant comparative method facilitated possible identification of themes and differences between individuals and cases within the data [ 40 ]. Our analysis started right after each interview, where the first author listened to the recorded interview. Memo writing was then used through the whole process of data collection and analysis and served as a record of emerging ideas, questions and categories [ 41 ]. Next, in line with the constant comparative method, open line-by-line coding of the transcribed interviews was performed [ 40 , 41 ], since we wanted to capture the meaning from the participants’ perspectives as they emerged from the interviews. The codes were compared for frequencies and commonalities and then clustered to organise data and develop sub-categories. The sub-categories were examined to construct the final categories and main theme. To add credibility and diminish researcher bias, two researchers (JM and SN) coded the transcribed interviews independently. During the analysis process, the authors held several meetings where codes and their connections were discussed until consensus was reached. To ensure that the emerging categories and themes fit the situations explored, the researchers went back and forth between contextualization, data analysis and memo writing [ 40 ]. An example of the analysis process is shown in Table 3 .

Ethical consideration

Ethical approval for this study was given by the Norwegian Centre for Research Data (NSD), Registration No: 60322. Each participant signed a written consent form after receiving oral and written information about the study. All identifiable characteristics are excluded from the presentation of data to ensure the anonymity of all individuals.

The main theme, ‘Elder abuse in nursing homes, an overlooked patient safety issue’, found in this study indicates an overall lack of awareness of elder abuse and its harm among care managers. Three analytical categories emerged from the analyses: 1) Abuse from co-residents – ‘A normal part of nursing-home life’ , 2) Abuse from relatives – ‘A private affair’ , and 3) Abuse from direct-care staff – ‘An unthinkable event’. Since there were no remarkable differences in care managers’ experiences, we present results without differentiating the participants. Below, we describe each category, together with examples of forms of abuse and neglect. These examples are used to describe the care managers’ perceptions of elder abuse and neglect (Table 4 ).

Abuse from co-residents – ‘A normal part of nursing-home life’

Resident-to-resident aggression was described as the biggest issue related to abuse in nursing homes and a daily challenge for the participants: ‘ That is what I also see, that co-residents are the biggest challenge regarding this topic’ (Group 2). The main cause of resident-to-resident aggression reported by care managers was symptoms of dementia, especially in the initiator, but also in the victim. The care managers expressed that they did not know how to address this problem. As one said, ‘ It happens because of the cognitive failure, so yes. But, at the same time, it is also difficult to do something about it’ (Group 2). Some care managers also stated that the risk of harm caused by resident-to-resident aggression was something residents must accept when living in a nursing home: ‘ There is a predictable risk, when living in nursing homes, [of] such incidents; there is a foreseeable risk that this will happen’ (Group 5) . This demonstrates that resident-to-resident abuse is normalized.

Care managers considered physical abuse to be the most serious form of resident-to-resident aggression, often leading to visible harm and despair. At the same time, all care managers had examples of residents who had been beaten, knocked down, or kicked by co-residents.

‘We have one resident now that is beaten a lot by the other residents. It’s a little extreme, but I think that such things can happen quite often in dementia care because, as in this case, the resident being beaten is not silent for a minute. She speaks and yells all day, and the other residents become annoyed since she disturbs them’ (Group 4).

Care managers described psychological abuse as acts of ‘everyday bullying’ and threats made among residents. They interpreted these situations as a normal consequence of the dementia disease in the individual resident. One care manager noted, ‘ What I think is the challenge is the everyday bullying. It is seen as normal behaviour for that group of residents’ (Group 1). When discussing psychological abuse connected to co-residents, all care managers provided examples of residents trespassing in other residents’ rooms. They interpreted this behaviour as a violation of residents’ privacy. At the same time, it was perceived as normal since it happened quite often. The care managers also reported that when residents trespassed and entered another resident’s room, the risk of other forms of abuse such as financial abuse increased. One care manager remarked , ‘We have some challenges related to residents who enter other residents’ rooms and destroy or take other residents’ possessions. It can be pictures and different things’ (Group 3).

Related to sexual abuse by co-residents, all care managers had examples of residents who had shown sexual interest in another resident. The care managers viewed this sexual interest as an ethical dilemma for them. On the one hand, they want residents to have a healthy sex life in the nursing home, but on the other hand, this is difficult when a resident has dementia and may not be competent to give consent. Several care managers experienced that what seemed to be voluntary sexual interest between residents could not be that, after all:

‘In that situation, she was very interested in him, and he was very interested in her. And it was like, yes, they were in the room together and so on. I remember it as very, very difficult because she often had a lot of pain. I do not know if there was penetration, but it was, in any case, an attempt, yes, it may as well have been that too. I had a lot of trouble because I was unsure whether she understood what happened and who it was happening with because it was often very difficult for her after they had been in the room together. I remember it as a huge ethical dilemma. But I never thought that it was a sexual . . . that it was an assault or something. But, right now, I think it was’ (Group 5).

During the focus group discussion, care managers reflected on the complexity of letting residents express themselves sexually and the risk of sexual assault. From their statements, it was clear that they had not reflected on this topic earlier. A summary of forms of harmful situations related to resident-to-resident aggression reported by participants is presented in Table 4 .

Abuse from relatives – ‘A private affair’

Abuse directed towards residents from their relatives was reported to be a particularly difficult problem. According to the care managers, relative-to-resident abuse was often hidden, occurring behind private closed doors when a relative was visiting the resident. Therefore, participants described it as difficult to discover and associated mainly with the private relationship between the resident and his or her relatives:

‘ It is very difficult. It is a relative who is going to visit her mother in the nursing home, she closes the door to the room and wants to be there alone with her mom, and we have very large rooms, so we thought they were having a nice time inside the rom. But then we discovered that the mom had some bruises, and then we understood that things were happening’ (Group 3).

Not all care managers had knowledge of or experience with relative-to-resident abuse, which highlights the private nature of these forms of abuse. Abuse from relatives was viewed as being linked to past family conflict, which continued inside the nursing home. The care managers deliberated over the extent to which they should interfere in the private relationship when they suspected this form of abuse. They reported that the problem was knowing what to do and when and how to interfere, especially when the resident has dementia or another form of cognitive impairment. One care manager remarked, ‘ It is very difficult. I have a patient who may not be competent to give consent. So, I have a responsibility I must take, but I think it’s challenging to know what to do’ (Group 2). Cases where the resident clearly did not want anyone in the nursing home to know about the abuse or to do anything about it and just wanted to maintain the relationship with his or her family member despite the abuse were reported to be particularly difficult. The care managers expressed that they lacked a strategy or authority in these situations, and harm to the resident being exposed was accepted.

‘ But it is not always that the resident wants us to do something, either. It may have been this way for a long time, and then, maybe it’s okay then. Well, I don’t know’ (Group 5).

Physical and sexual abuse from relatives was regarded as the most hidden form of abuse from relatives. Some care managers provided examples of physical abuse, but none had experienced sexual abuse. However, all care managers commented that when it happened, it took place behind private closed doors. In addition to past family conflict, abuse from relatives was often related to mental problems and/or drug abuse issues. One care manager said, ‘ I have experienced some older people who have children with drug issues and such things. And it is in those cases, I have experienced physical abuse towards residents from relatives’ (Group 4). Related to physical abuse from relatives, care managers also reported situations where a relative forced the resident to, for example, eat, get dressed, wash and groom, or exercise. These situations were linked to unrealistic expectations in relatives, and not trusting the staff is doing a good job.

‘After her husband had been there, we saw that she was so red around the cheek. We then found out that the husband squeezed her mouth open and poured cream into her’ (Group 3).

Care managers viewed psychological abuse from relatives as disrespectful communication with the resident. A participant stated, ‘We experience that relatives can be quite disrespectful to their loved ones. But, at the same time, it may have been this way their whole life’ (Group 6).

Care managers expressed that financial abuse from relatives was a common occurrence. They cited examples of stealing money from residents, threatening residents in order to get money from them, and unauthorized use of a resident’s finances. One participant stated, ‘ What I see most from the relative’s part is financial abuse. It is very common, actually’ (Group 1). Relatives’ economic problems were reported to be a causal factor related to financial abuse. At the same time, care managers indicated that financial problems and financial exploitation by relatives were private issues, and as such, they were reluctant to interfere.

Related to neglect, care managers described that some relatives made decisions on behalf of the resident without considering what the resident wanted and needed or would agree upon. Care managers stated that sometimes the health care staff also disagreed with the relative’s decision. One care manager noted, ‘ We have situations where relatives make decisions on behalf of the resident, which we do not agree upon, and which we might think the resident would not agree upon either’ (Group 3 ). Care managers also described experiences of relatives who refused to allow a resident to buy items the care managers considered necessary and not provided by a nursing home. These could be things such as clothes, hairdressing services, or podiatry, but it could also be related to taking part in activities that cost money. A care manager remarked:

‘ I have a resident who called her son to ask if she could go to a podiatrist because she really needed it, but her son refused and said she has no money for that’ (Group 5).

Thus, because of neglect by their relatives, residents might go without necessities of daily living and may not be able to participate in activities they would like to take part in. A summary of forms of harmful situations related to relative-to-resident abuse reported by participants is presented in Table 4 .

Abuse from direct-care staff – ‘An unthinkable event’

When care managers were prompted to talk about staff-to-resident abuse, they reframed the discussion to focus on the verbal and physical aggression they commonly experienced from nursing home residents. They interpreted aggression directed toward them as a risk to their health and safety. Moreover, they stated this phenomenon was a daily concern. One noted, ‘ We have the opposite focus in our units. We focus on staff being subjected to abuse by residents’ (Group 2). Several care managers also indicated that they understood that staff could become stressed and frustrated in their relationship with an aggressive resident:

‘We have a case that is extremely difficult, where there are many violations against staff by a resident. And then, to be in such a situation where you can quickly retaliate . . . this is difficult’ (Group 6).

Despite this, care managers expressed that elder abuse was not a topic they talked about in their daily work at the nursing home. They indicated that they wanted to trust the employees. Therefore, abuse from staff was difficult to talk about and almost unthinkable to them. One care manager said, ‘I think that no one who works in the nursing home started there just to be able to hurt someone, and that is perhaps why this is such a sensitive and difficult topic’ (Group 5) . The word ‘abuse’ was also reported to be a very strong term and mainly related to intentional physical acts. However, in the discussion, care managers also included unintentional acts in their examples of elder abuse and expressed that, to some degree, it could be difficult to know the full intention of a staff member’s actions. At the same time, they emphasised that staff’s intentions were mainly good, and therefore abuse was unthinkable:

‘Everyone who works in a nursing home is motivated by and has a desire to help someone. So, most of the [incidents] of abuse by staff . . . I think it may be those with a good intention at the heart of it. [For instance, thinking] “I thought he should have a shower, but I forgot to ask” (Group 5).

Care managers discussed examples of the use of physical and chemical forms of restraint and rough handling during care. Utilization of restraints and dilemmas related to their use was discussed in all focus groups, and care managers pointed out that the staff are sometimes compelled to use both physical and chemical restraints to help or protect the resident:

‘I think in relation to, well it is really both physical and psychological abuse. I think of cases, especially at night, where there is low staffing and many residents with aggressive behaviour, where it may be chosen to lock some residents into their rooms to prevent them from being exposed to abuse from co-residents so the staff can deal with the situation, but it is abuse to be locked inside’ (Group 2).

Rough handling was something that all care managers had experienced. This was thought to be mainly unintentional and something that could happen when caring for residents with aggression or those who resist care. Care managers expressed that, to define it as abuse, it had to be significant, or there needed to be visible signs of such handling, such as bruising. At the same time, the care managers also pointed out that residents in nursing homes often bruise easily, and it can be difficult to determine whether such marks are related to abuse:

‘Sometimes, we saw that she was so easy to bruise, and sometimes we clearly noticed hand marks on the bruises around her body. But it can be enough that you handle someone a little hard, and in the old ones, then they get bruises, although it can also indicate that there has been resistance, right. But then this happens all the time’ (Group 4).

Psychological abuse from staff members was linked to verbal abuse. Care managers cited examples of yelling at a resident in anger, speaking to a resident in a disrespectful tone, or being rude, which allegedly occurred in relation to resident-to-staff aggression. When discussing psychological abuse, some care managers also provided examples of violations of residents’ privacy by staff members, such as discussing residents’ health care issues and challenges in public areas in the nursing home:

‘If there has been a resident with a rejection of care responses, for example, that has been difficult to cooperate with, then that frustration can be expressed in public areas with other residents present. Without caution by staff, this is something other residents are going to hear’ (Group 5).

Financial abuse was thought to be related to stealing money or destroying a resident’s property. At the same time, care managers reported that their nursing home policies do not allow residents to keep much money in their rooms in order to protect residents from financial abuse by staff, visitors, or others, and hence, financial abuse from staff rarely happened. One said, ‘Financial abuse only happens if the residents have money laying around’ (Group 1).

When talking about sexual abuse, care managers offered examples of residents who stated that they were sexually assaulted by staff members. These were often female residents who expressed that male staff had sexual intentions towards them during care. At the same time, care managers reported that such statements from residents could be part of the dementia disease, and that resident could have hallucinated the abuse. Care managers indicated that sexual abuse by staff was unthinkable to them:

‘Sometimes, older people with cognitive impairment say things that we can become uncertain about. They say things, but we can’t be sure there has been an assault. Often, we think that it has not happened. It’s about us knowing them; they say a lot of these things and are very sexually oriented’ (Group 4).

Even so, a few care managers mentioned examples of sexual abuse by staff a long time ago that had been reported to the police, and the staff member was convicted.

Related to neglect, care managers reported that staff often did things for residents to save time instead of letting them do it independently. They also reported being aware that, in many situations, staff members do not pay attention to residents’ wishes and thereby neglect to include them in decisions concerning daily life in the nursing home. One care manager noted, ‘ It says on the duty list that you should shower today, so you should shower, even if you might say, “No, I don’t want to.” So, yes, it is your turn today’ (Group 3). Another form of neglect by staff was reported to be linked to health care neglect. Care managers referred to events such as not helping a resident with needed health care, giving a resident an incontinence product instead of helping them use the toilet, not calling for medical help when needed, and not following up on medical conditions:

‘To put on a pad instead of following the patient to the toilet, for those who still manage to use the toilet themselves . . . that can happen’ (Group 6).

The care managers reported that, because of low financial resources, staff must prioritize their work and tasks every day. For this reason, situations not specifically related to medical treatment and physical or health outcomes were given lower priority. This reprioritization was framed as acceptable and was not defined as neglect. One said, ‘ It is about our time. So, no, we don’t have time for you or that need is not important. It is about what we have to prioritize’ (Group 6). A summary of forms of harmful situations related to staff-to-resident abuse reported by participants is presented in Table 4 .

The aim of the study was to explore nursing home leaders’ perceptions of elder abuse and neglect. We found that most of the care managers were not explicitly aware of elder abuse in their daily work. However, when given keywords, they all came up with examples of situations they interpret as harmful or distressful to residents. This shows that care managers need time to reflect on complex aspects of care to become aware of abuse and neglect as a safety issue. At the same time, our findings revealed an ambiguity in the care managers’ examples. The situations, on the one hand, were described as harmful. On the other hand, they were rationalized as care managers attempted to excuse why it was happening. Three main categories are described in the finding: Abuse from co-residents – ‘A normal part of nursing-home life’, Abuse from relatives – ‘A private affair’, Abuse from direct care staff – ‘An unthinkable event’. These findings indicate that this cohort of nursing home care managers lack awareness of the abuse they observe or hear about. Particularly, these findings demonstrate that harm or distress to residents caused by abuse are an overlooked patient safety issue in these nursing homes.

Findings revealed that resident-to-resident aggression is a common form of abuse in nursing homes and a daily challenge. There is a high prevalence of residents with neuropsychiatric symptoms of dementia, including aggression, agitation and psychosis in nursing homes [ 25 , 26 ]. These symptoms impact on co-residents and staff safety, and resident-to-resident aggression is the most common form of abuse in nursing homes [ 16 , 17 ]. However, our findings revealed that harm resulting from resident-to-resident aggression was perceived as normal. This raises the question of whether care managers perceptions place the responsibility on the resident, without accounting for the complexity in the aggressive behaviour and the responsibility of the organization [ 22 ]. It is worth noting that in resident-to-resident aggression, both residents can suffer harm, since the initiator is likely to be confused and usually not responsible for the acts. For the victim, resident-to-resident aggression has both physical and psychological consequences [ 47 ]. However, previous research has also indicated that abusive behaviour can be understood as less abusive when the victim has dementia, and for that reason it is often not reported [ 17 , 48 ]. Recognising that aggressive behaviour has a multifactorial aetiology, best practice recommendations [ 49 ] and research evidence [ 50 , 51 ] call for a comprehensive biopsychosocial approach that investigates the resident’s unmet needs, medical conditions, environmental factors, and interactions between residents and caregivers and a tailored response [ 49 ]. Care managers’ perceptions of resident-to-resident aggression as normal and a foreseeable risk, places residents at risk and is also a failure to deliver much needed care to the initiator.

With respect to relative-to-resident abuse, findings demonstrate that care managers perceive negative events resulting in harm or distress as a private affair between the resident and his or her relatives, and that is difficult to intervene. Similarly, to resident-to-resident abuse, this indicates that the care managers place the responsibility of the observed abuse on the relationship between the resident and his or her relatives, without accounting for the complexity and their own responsibility in these situations. Care managers examples of relatives who force a resident to eat due to unrealistic expectations and distrust in nursing home staff’s care reveals that care managers find it difficult to interact with families. This finding points to potential communication difficulties between staff and resident’s relatives that could adversely affect the resident [ 52 , 53 ]. A Norwegian study that investigated quality of care from the perspective of families in long-term care found that family members saw themselves as an important link between staff and the resident, and an essential voice regarding the resident’s needs and wishes [ 53 ]. However, given the nature of the nursing home and the complexity of its organization and routines [ 22 , 23 ], it can be difficult for someone outside the organization to judge what is and is not adequate clinical practice. Collaboration and communication with the residents and their relatives depend on how the culture in the nursing home view these interactions; the relatives with right to an opinion, or professional as experts and in control [ 6 , 22 , 52 ]. This will in turn affect the quality and safety of the care that is delivered to the residents.

Although some care managers had experience of staff-to-resident abuse within all abuse categories, it was also difficult for them to admit to this form of abuse, and it was viewed as an ‘unthinkable event.’ Instead, care managers were mostly interested in talking about resident-to-staff aggression which they emphasised was a larger problem in their nursing homes. Resident- to-staff aggression can cause physical and psychological harm to staff, reduced job satisfaction, stress and burnout, emotional reactions including sadness, guilt and helplessness [ 28 ]. However, resident-to-staff aggression may also lead to reactive abuse and neglect, due to frustration in staff member being exposed to aggression [ 11 , 13 , 27 , 28 ]. Findings in the present study demonstrate that care managers lack awareness of the staff’s reactive responses to aggression from residents. This might raise the question if they perceive staff as victims in these situations and that abuse from staff is understandable. Unprovoked or intentional abuse towards a resident therefore is unthinkable with justification in their trust to the staff.

Difficulties in defining abuse in nursing home settings have been found in studies that include staff’s perceptions [ 39 , 54 ], where abusive situations are seen as normal in the nursing home culture [ 17 , 33 , 39 , 55 ]. However, these studies did not specifically focus on care managers’ or leaders’ understandings. Our study reveals important information related to detection and management of abuse in nursing homes, since care managers’ perception of abuse affects what they signal to staff as important to report. Care managers have the opportunity to influence the culture and care practice in the nursing home and are responsible for setting policies for the staff, it is therefore essential that they are aware of and able to face situations that constitute potential harm to the residents. But, to be able to define situations that can be experienced as harm and distress, it is essential to see situations from the perspective of the residents. Harm and distress are defined differently from the point of view of the one who causes the harm [ 39 , 54 ], the one observing or hearing about it [ 14 ], or the one who experiences a situation of harm or distress [ 20 , 21 ]. Our findings indicate that the care managers had difficulties in seeing potential harm caused by abuse and neglect from the perspective of the residents. Leaders’ abilities to promote a safety culture for both the resident and staff are linked to their leadership skills, knowledge of the resident’s needs and their capacity to implement effective safety care practices [ 6 , 31 , 32 ]. Care managers’ lack of awareness in identifying and following up on abuse will necessarily affect the safety culture in the organisation and, in the end, clinical outcomes such as quality and safe care for the residents [ 6 , 10 , 56 ].

A recent Norwegian study found that communication, openness and staffing were significant predictors of staff’s overall perception of patient safety in nursing homes, yet the nursing home staff scored low on these dimensions [ 56 ]. This finding aligns with our study, which revealed that care managers find it difficult to distinguish between prioritising and patient neglect. Low financial resources and low staffing can affect the perception of what constitutes harm and safety in the nursing home culture. Low finances, combined with the complexity of residents’ needs, the complex organisation, and demands for improved outcomes, puts great pressure on nursing home leaders [ 22 , 57 ]. The ambiguity in their examples can be understood as an attempt to rationalize abuse and diminish their personal and professional accountability. People in complex social systems will try to make sense of tasks and orders by adapting to internal and external demands [ 22 , 23 ]. Health care policies that mandate efficiency, cost saving, and nursing home care managers’ focus on prioritising contribute to lowering the limit for what is perceived as quality and safety, resulting in low quality and unsafe environment as the norm and accepted in nursing homes.

Strengths and limitations of the study

A strength of this study is that it involves participants who are in leader positions in different nursing homes and municipalities in Norway, which could increase the transferability of these findings. The research team consists of members from two countries, all with broad research experience, which contributed to multiple perspectives and discussions during analyses of the data. This strengthens the trustworthiness of our findings, and the credibility of the research. Three of the authors have worked several years in nursing homes as care managers, but none of those nursing homes participated in this study. The researchers’ backgrounds as care managers has both advantages and disadvantages. A variety of aspects of participants’ experiences was discovered by posing in-depth questions that might not have been possible without the background knowledge. However, the background knowledge can influence the type of follow-up questions that were asked. To counterbalance this possible bias, two researchers were always present during the interview, and the analyses were also independently coded by two researchers (JM and SN). Each focus group consisted of three to six participants, which can be perceived as small groups and a limitation. However, the participants gave a rich description of the phenomenon. Therefore, we decided to include data from the smallest groups.

The examples of abuse and neglect our participants described in the present study could be second-hand information because leaders are not always part of the direct hands-on care residents receive. At the same time, this study has sought to understand the nature of elder abuse from care managers’ perspective, which is of great importance due to their responsibility for creating a safe environment for both residents and staff. Even though the examples are second-hand information, the findings are representative of the care managers’ perceptions of the information and what we thought was important to study.

Many nursing home residents have dementia, neuropsychiatric symptoms, and complex needs, which increases the risk of their being exposed to abuse and neglect. At the same time, little is known about the nature of elder abuse in nursing homes and compared to research on other forms of interpersonal abuse, the study of elder abuse in nursing homes is still in its infancy. Care managers influence the culture and care practice in nursing homes and set policies for staff. Knowledge about their empirical understanding of the phenomenon is important to form more effective intervention and prevention strategies. The present study shows an ambiguity in the nursing home leaders’ examples of abuse and neglect. On the one hand, the situations were described as harmful. On the other hand, they were rationalized with an attempt to excuse their occurrence. Our study revealed that elder abuse and neglect is an overlooked patient safety issue in nursing homes. Care managers lack knowledge and strategies to identify and adequately manage abuse and neglect in nursing homes, and this warrants further research.

Availability of data and materials

The datasets generated and/or analyzed during the current study are not publicly available due to format of the data not allowing for completely anonymizing data but are available from the corresponding author on reasonable request.

Abbreviations

Research Council of Norway

Registered Nurse

World Health Organization

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Acknowledgements

We would like to express our gratitude to our participants for sharing their experience and thoughts on the topic of elder abuse and neglect in nursing homes. Thanks to Anja Botngård and Stine Borgen Lund for contributing to data collection as co-moderators.

Ethical approval for this study was given by the Norwegian Center for Research Data (NSD), Registration No: 60322. All the participants were provided with written information about the study. They gave written consent to participate in the interviews and for the use of the data from the interviews.

Authors details

JM: RN, MSc, PhD candidate, at Department of Public Health and Nursing, Faculty of Medicine and Health Sciences, Norwegian University of Science and Technology NTNU, Trondheim, Norway.

SS: RN, MSc, PhD, Associate professor at Department of Public Health and Nursing, Faculty of Medicine and Health Sciences, Norwegian University of Science and Technology NTNU, Trondheim, Norway.

WM: RN, MSc, PhD, Associate professor at Department of Public Health and Nursing, Faculty of Medicine and Health Sciences, Norwegian University of Science and Technology NTNU, Trondheim, Norway.

JO: RN, GCert Cont Prom, GCertHE, MNurs-Res, PhD, Research Fellow, Centre for Quality and Patient Safety Research, School of Nursing and Midwifery, Institute for Healthcare Transformation, Deakin University, Geelong, Australia.

SN: RN, MSc, PhD, Professor at Department of Public Health and Nursing, Faculty of Medicine and Health Sciences, Norwegian University of Science and Technology NTNU, Trondheim, Norway

The study is funded by the Research Council of Norway (NFR) project number: 262697.

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Janne Myhre, Susan Saga, Wenche Malmedal & Sigrid Nakrem

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JM wrote the manuscript. JM, SS, WM, JO and SN developed the study design. JM transcribed the interviews, and JM and SN performed the analysis of the interviews, with discussion including all authors. SN supervised the project. All authors did critical revisions of the manuscript for important intellectual content and read and approved the final manuscript.

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COREQ checklist.

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Interview guide.

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Myhre, J., Saga, S., Malmedal, W. et al. Elder abuse and neglect: an overlooked patient safety issue. A focus group study of nursing home leaders’ perceptions of elder abuse and neglect. BMC Health Serv Res 20 , 199 (2020). https://doi.org/10.1186/s12913-020-5047-4

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• Elder abuse
• Patient safety
• Long-term care
• Nursing homes
• Care managers
• Qualitative
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BMC Health Services Research

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A three perspective study of the sense of home of nursing home residents: the views of residents, care professionals and relatives

• J. van Hoof 1 , 2 ,
• H. Verbeek 3 ,
• B. M. Janssen 4 ,
• A. Eijkelenboom 5 ,
• S. L. Molony 6 ,
• E. Felix 2 ,
• K. A. Nieboer 2 ,
• E. L. M. Zwerts-Verhelst 1 , 7 ,
• J. J. W. M. Sijstermans 1 , 7 &
• E. J. M. Wouters 1 , 2  

BMC Geriatrics volume  16 , Article number:  169 ( 2016 ) Cite this article

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The sense of home of nursing home residents is a multifactorial phenomenon which is important for the quality of living. This purpose of this study is to investigate the factors influencing the sense of home of older adults residing in the nursing home from the perspective of residents, relatives and care professionals.

A total of 78 participants ( n  = 24 residents, n  = 18 relatives and n  = 26 care professionals) from 4 nursing homes in the Netherlands engaged in a qualitative study, in which photography was as a supportive tool for subsequent interviews and focus groups. The data were analyzed based on open ended coding, axial coding and selective coding.

The sense of home of nursing home residents is influenced by a number of jointly identified factors, including the building and interior design; eating and drinking; autonomy and control; involvement of relatives; engagement with others and activities; quality of care are shared themes. Residents and relatives stressed the importance of having a connection with nature and the outdoors, as well as coping strategies. Relatives and care professionals emphasized the role the organization of facilitation of care played, as well as making residents feel like they still matter.

Conclusions

The sense of home of nursing home residents is influenced by a multitude of factors related to the psychology of the residents, and the social and built environmental contexts. A holistic understanding of which factors influence the sense of home of residents can lead to strategies to optimize this sense of home. This study also indicated that the nursing home has a dual nature as a place of residence and a place where people are supported through numerous care strategies.

Peer Review reports

Nursing homes provide an alternative place of residence where 24 h care and assistance is offered by professionals when people can no longer reside in their own home environment due to increasing need for assistance with activities of daily living, complex health care needs and vulnerability [ 1 , 2 ]. Admission to a nursing home is a major life-event, as most individuals do not wish to leave the home they have been living in for a long time in order to move to a nursing home [ 3 ]. Nursing homes have a dual nature: as a care institution and as a place to live. Therefore, many health care organizations try to provide living arrangements that focus on ‘the good life’ and the creation of an environment that is like a home to its residents, instead of a health care facility in which they also reside [ 4 ]. Delivering both good (clinical) care and a homelike environment is challenging. Nevertheless, “ there seem to be good reasons to assert that living in an institution and being “at home” is not a contradiction in terms ” ([ 5 ], p. 221).

One of the challenges in modern day nursing home care is to create a sense of home for the residents. The sense of home is a multifactorial phenomenon which is highly influenced by both social and personal characteristics, as well as the built environment and the architecture of the facility. A sense of home is related to personal experiences and emotions, and does not come into existence over night, but is gradually developed by the person for whom independence, security and the source of own identity, choice and controls, as well as memories are essential [ 6 – 14 ].

Rijnaard et al. [ 10 ] systematically reviewed the factors influencing the sense of home of older adults residing in the nursing home. Their review showed that the sense of home of nursing home residents is influenced by as much as 15 factors, which are divided into three themes. The first theme consists of psychological factors, including the sense of acknowledgement, preservation of one’s habits and values, autonomy & control, and coping. The second theme consists of social factors, which include interaction and relationship with staff, residents, family & friends, and pets, as well as specific activities. The third theme is the built environment, which includes the private space and the (quasi-) public space, personal belongings, technology, the look and feel, and the outdoors and location of the nursing home. These three themes are a representation of the dimensions in which nursing home residents experience or develop a sense of home. Molony [ 7 ] also included the centrality of home as a both a refuge and link to personal meaning, and described the dynamic nature of home as a temporal process of person-environment integration signified by an openness to new possibilities in the current environment and situation.

Insights into the differences in perspectives on the concept of home are sparse. In practice, various stakeholders are involved in the creation of a sense of home, such as the residents themselves, their professional caregivers working in the nursing home, and relatives of the residents. To the latter two groups, the nursing home environment is either a place to work, or a place that should be inviting to visit and assist their loved-ones. Differences in the perspectives and insights of these three groups, may lead to suboptimal conditions for any of these groups, as preferences or needs of one group prevail over those of the others [ 15 , 16 ]. If creating a sense of home is recognized as the central goal, the needs and preferences of the residents themselves must be prioritized.

This study explores which factors in the psychological, social and built environment are related to the sense of home of the residents. The goal of this study is to gain insight into the experiences and views of actual residents, their relatives and care professionals, in order to understand their needs in relation to the design of nursing homes and to promote a social context that facilitates person-environment integration. In order to carry out the multi-perspective study, three separate research questions are defined.

For residents: “Which aspects create an optimal sense of home in the nursing home for you?” For care professionals: “Which aspects contribute to a sense of home of nursing home residents, and how can care professionals help create these things for the residents, and, at the same time, have an optimal place to work?” For relatives: “Which aspects contribute to a sense of home of your loved-one, and consequently, what makes it a place you like to visit?”

The focus of the three research questions is on personal, social, and physical aspects, in existing nursing homes, and on things one can do, experience or organize with a limited amount of (financial) means.

A qualitative methodology was chosen for this study, incorporating photography, in depth interviews with nursing home residents, and focus group sessions with relatives and professional caregivers. The Critical Appraisal Skills Programme’s checklist for qualitative research [ 17 ] was used as a guide for this study. In the following sections we describe (1) the settings, participants and ethical considerations, (2) photography approach, (3) interviews, and (4) the data analysis. This study builds on the foundations laid in the study by van Hoof et al. [ 14 ].

Settings and participants

In October and November 2015, a field study was conducted in four facilities of four nursing home organizations in towns in the south of the Netherlands. Two of these nursing homes were urban and two were rural nursing homes, in which residents have a private room. The resident populations were mixed, i.e., resident had either a psychogeriatric, physical or combined diagnosis for admission. The study aimed to include both residents with physical limitations and psychogeriatric health problems, as well as informal caregivers (relatives) and professional caregivers, in order to gain a wide set of perspectives. The inclusion criteria for the research were as follows; residents had to be at least 55 years of age, had to reside in a nursing home for at least six months, had to be able to communicate in Dutch, had to be able to take pictures with a photo camera independently or with the help of caregivers or relatives, had to be able to make a selection of important photos independently, and had to be able to have an interview of at least 30 min. Informal caregivers had to have a sustainable relationship with a nursing home resident (in this study: family members). Professional caregivers, in this study limited to nurses and nursing aides, were invited to join. For every of the four nursing homes, the research team aimed to recruit 10 residents, 10 relatives, and 10 care professionals, totaling 40 participants for each group (Fig.  1 ). In the end, a total of 78 participants successfully completed the study protocol ( n  = 34 residents, 18 relatives and 26 staff). The main reason for attrition among relatives and staff was the lack of time to participate both in the field study and in the subsequent joint meetings.

Number of participants per nursing home

• Photography

A visual research method was chosen for this study [ 14 , 18 , 19 ], in which people are interviewed based on photographs they have taken themselves with cameras supplied to them by the research team. Photography is a method that has been used in research for decades, and which allows participants to create a record of an event, capture a complex phenomenon or to tell a story through images [ 20 – 22 ]. As taking photos does not rely on language alone, it can be used with vulnerable or frail populations who might not normally be included in research [ 20 – 22 ]. Images provide a lasting record of an event, or in the case of this study an architectural or social scene, required to study the relationship of people and their living environments. A photo only serves as a conduit to enhanced, thoughtful, and deliberative narrative, instead of as a replacement of words. Photography allows complex environmental, health and social issues to be captured and then shared with other people [ 19 , 20 ]. As this study tries to capture the real-life experiences of nursing home residents, the photo-production method was applied [ 18 ]. In line with Annemans et al. [ 19 ], this study sought to obtain a good understanding of what has been made visible on the photos, in addition to why and how. The photo production method enables researchers to experience a phenomenon from another point of view, in other words, the nursing home as a living environment.

Joint procedure at the start

Every field study started out by having an introduction presentation in the four nursing homes, in which information about the research was provided to potential participants. At the kick-off presentation, prospective participants of all groups received an information letter from a member of the research team. Informed consent was obtained from the participants (for residents, in conjunction with their initial family caregivers) by signing the given consent forms. Nursing home residents, their relatives and care professionals were invited to make pictures of what gives the residents a feeling of home in the nursing home. This could be typical activities that provided a sense of home, or typical aspects of the built environments; in essence everything that visualized the experience of being at home in the nursing home. A manual including instructions how to take the photos supplied to all participants. Participants were asked not to take explicit pictures or photographs of people who did not want to be photographed, as photographs would be shared in focus group sessions within the own nursing home and become available to the researchers for analysis.

The research team chose to provide the participants with disposable cameras instead of digital cameras, as laid out by van Hoof et al. [ 14 ]. Disposable cameras are cheaper than digital cameras and when dropped, are not as easily damaged. In this study, participants were supplied with a camera for one week up to a week and a half, and were asked to take pictures of their living environment. The reel of the camera contained about 25 photos, which should be sufficient for taking the most important pictures, but participants were free in the number of pictures they took (taking fewer than 25 photographs was allowed). Support to residents could be provided to the participants for taking the photographs, for instance, by relatives, staff or interns working in the facility. After the time period, the cameras were collected by the research team, and sent off for development of the photos. Upon completion, the principal investigator returned to the participants. The photos were used as a basis for the interviews (residents) and focus group sessions (relatives and staff), as participants could use these photos as a foundation for what they wanted to discuss in the interview [ 23 ].

Interviews with residents

Individual interviews with residents were conducted, during which residents talked about their photographs, and how they attributed social and personal meanings and values to these photographs. This individual approach was chosen because the research team wanted to maximize the input for every resident in a secure setting. The interviews had the character of a conversation and varied between 30 and 60 min each, depending on the richness of the conversation and the attention span of the participants. Each interview commenced with an introduction and the opening question included whether participants could describe their experiences concerning their living environment in general. Thereafter, the pictures were discussed in terms of the contents of the photographic material. Participants were asked to describe what the pictures meant to them in the context of the sense of home. The interviews were supplemented by items from a topic list, which was based on the work of Van Steenwinkel et al. [ 11 ] and van Dijck-Heinen et al. [ 4 ]. The participants were free to add other topics related to the concept of home, which were not included the topic list.

Focus group sessions with relatives and care professionals

A total of eight joint focus group sessions were held in every nursing home with (1) relatives, and separately with (2) care professionals. This group approach with either relatives or care professionals was chosen because the research team wanted the participants to interact and discuss their findings. The focus group sessions lasted for about 90 min each. During the session, photos of the participants were viewed by each other, and discussed. Pictures and comments were thematically clustered by the participants. Based on the discussions, participants were invited to write down which positive aspects of the nursing home should be kept, and which aspects should be improved. These aspects were later discussed in a plenary session with the participants. Subsequently, a prioritization of positive and negative aspects was made by the participants, in order to have direct take-home messages for the participants.

Data analysis

All interviews and focus groups were recorded with a voice recorder, and transcribed verbatim by the research team. The data were analyzed based on the six phases by Braun and Clarke [ 24 ]. First, all transcripts were read in their entirety. Then, the first set of codes was generated through open coding. The researchers, bearing the research questions in mind, systematically highlighted the relevant information (open coding) in the transcripts. Open coding concerns the process of unravelling all of the collected data into fragments or codes. Similar codes and quotes were clustered and labelled, and themes emerged from this process. Together, the research team organized the codes and clustered them into smaller thematic groups on a plenary research team meeting in December 2015 (axial coding). During this session, the codes from the four nursing homes were written down on post-it® notes that came in four separate colors, and were clustered on three sheets, representing the three groups of stakeholders. Themes were formed out of the codes during a plenary discussion sessions with EZ, KN, BJ, EF, JH, JB, MVe, and which were observed by MVo. These themes were reviewed, and then defined and named. A second plenary discussion with the research team was held in March 2016 in order to come to a final consensus on the themes and factors and selective coding was applied. In order to guarantee the anonymity and privacy of participants, names of people and institutions, appearing in quotes, were deleted from the written texts or were changed.

There are numerous factors that influence the sense of home. The analysis led to the identification of several themes, which overlap between the various groups of stakeholders, but which have subtle differences in their constitution (Table  1 , Fig.  2 ). Most of the photos taken by the participants were used as auxiliary material during the interviews. The overall quality (colors, focus) of the photos was too low to be included in this section. The overall impression of the photographic material was the same throughout the groups, but the meaning given to the photos differed.

Graphical overview of themes for the three stakeholder groups

These themes are further elaborated in the following sections.

Building and interior design

Both the interior and exterior design contribute to a sense of home of all three groups of stakeholders. Residents cherish being able to bring their own possessions and turn the room into a familiar place. The nursing home should have a practical layout which is supportive to the resident. More rugs, candles, flowers and colors are desired, or more practically, nice placemats on tables. Residents wish to be able to have visitors in their private room. Personal possessions that remind people of their past are appreciated, such as paintings, old chairs and even television sets. Some residents do not have a private shower and indicate that this hampers their sense of home. These residents also wish more closet space, and kitchen areas are not always needed in the private room as staff takes care of the cooking. Some residents wish for a larger room. Single person’s rooms are preferred, full of paintings and photographs that remind people of their past. Empty walls are considered unattractive, and some of the residents stated that the interior design of the communal areas is dull and frugal. Privacy in terms of the built environment is mentioned as well.

“Yes, my room is a bit small. Not so large. But still, it is my own stuff. It is my own and it is safe from others.” [resident] “I brought as many things from home as I possibly could.” [resident]

In terms of the organization of care, in one nursing home people mentioned the fact that they are not allowed to put nails into the walls to hang pictures as a negative feature that hampers a sense of home. Residents want to stay in control of their own room and the way it looks.

“It is important that my table is full of stuff, and that I am allowed to leave it full of stuff.” [resident]

The relatives in this study stressed that having a spacious room is a facilitator to the development of a sense of home. The interior design and furniture should be familiar and preferably brought from the old home.

“Now that the room is all decorated, she has a peace of mind. And she is very content.” [relative]

In terms of a familiar interior design, relatives speak of chairs, special crockery, and having a private chair in a preferred spot. There should be sufficient closet space, display space, and storage for personal items. The building should be designed in such a way that care professionals cannot lock themselves up, away from the residents, and that they can be approached by others.

“The office of the care staff is always locked. There should not even be a door! Always shut! It is all covered up. You cannot see them sit in there.” [relative]

Certain facilities, including Wi-Fi, should be available throughout the entire nursing home building. Relatives are aware that there is a need for privacy, but stated that this may be in conflict with the need to safety and security. Other relatives stated that residents should have their own spot in the communal space, and that there should be sufficient space to move and walk around.

“Having your own key is essential. I now have the key to my mother’s room, we always had a key.” [relative]

Some of the design could be nostalgic, with a regional or geographical touch, and based on the time-frame of the residents. In one of the nursing homes, residents were explicitly invited to decorate their own rooms, as well as the communal living areas.

“One of the residents said: ‘Finally, I have my old belongings back again.’ It was actually stuff from a second hand shop.” [staff] “And this hospital corridor? It absolutely does not allude to home. I think this corridor represents what people do not want. It symbolizes a sense of institution.” [staff]

When decorating a space, aspects of accessibility should be considered, also in terms of the layout of a space and the presence of thresholds and other architectural features that impede or support accessibility. Human factors and ergonomics are integral parts of the built environment, according to the care professionals. A circuit for walking was mentioned by the care professionals as an important architectural feature for residents to feel at home. In this circuit, there should be attention for design and decorating, as well as having various objects and cues for orientation. Having the right lighting is important too.

“Some group rooms are too small to accommodate the residents. And many relatives take their loved-ones to their private rooms.” [staff] “I don’t understand that you put all these obstacles in the corridor. Lately, the corridor has been empty, and I thought that was a positive thing.” [staff]

Eating and drinking

Residents can really enjoy food and drinks. Being able to cook or prepare meals oneself is valued by some, but at the same time many residents have never cooked themselves and do not venture out in the kitchen. Some residents explicitly stated that they like that fact that others cook for them. Instead of helping to prepare dinner, they ‘helped’ eating whatever was cooked for them.

Drinking coffee together is a moment cherished by many. Sitting around a table together reminded many people of the old days when they did this with their large families.

Mealtimes, food and drinks are recognized by relatives as an integral part of the sense of home, and this group of stakeholder stressed the importance of food and drinks the most. A full fridge represents a family atmosphere, a sense of affluence, and people have the notion that it is okay to take something from the refrigerator.

The smell of food contributes to a home-like atmosphere. Apple pies, deep-fried snacks, fries, barbecued foods, are mentioned by relatives. Some also think it is acceptable that people get alcoholic drinks at 11:00 in the morning. Residents should be able to eat normal means and have some choice of what they want to eat. Tables should be set according to personal preferences.

“My husband hates mashed potatoes. He likes boiled or baked potatoes, but no mash. He simply can’t swallow it. And still he gets the mash.” [relative]

Some of the mealtime portions are not fitting. At home, people had more of luxury food items than that they are allowed to have in the nursing home.

“If you live at home and you like this raisin bread, you just eat the whole loaf. Mum asked how much she was permitted to have. Staff told her that all she could have was one slice.” [relative]

Staff regarded food and drinks integral part of the sense of home. Eating is both functional and a social activity.

“Sitting around a table together. And having conversations together. It is something you do at home. The larger the seating arrangement, the less people talk” [staff]

Dining is more than just eating; it is also a moment of peace, and a part of the daily routine and autonomy. Ambiance is a part of the dining experience. In small living rooms, there is no need for a meal cart. A refrigerator is mentioned by a number of participants, also as a sign of hospitality. Being able to choose what you want to eat and when, partly symbolizes the sense of home, such as opening a pack of crisps or make a cup of warm chocolate. Furthermore, residents can help in preparing food and setting plates.

“What I find important at home, is a refrigerator full of food and drinks that I like.” [staff] “Just being able to pick fruit from a table. It is there for people to take. And they do! And you shouldn’t feel bothered if you find an apple that is missing a bite…” [staff]

Autonomy and control

Autonomy is mentioned by the residents as an important factor in their sense of home. People should ideally be equals, and should have a freedom in the choices they make, and have some degree of influence in aspects that impact their daily lives. However, residents experienced low levels of autonomy, which impeded their control and sense of being at home. Being able to assist in household activities is appreciated, but is not appealing to all residents. Many residents find it an attractive idea that many tasks are being taken care of.

“Things are always done for you before you can decide yourself. When you are at home, you make decisions yourself. Now, when something needs to be done, you need to talk it through and then there is a meeting”. [resident]

When speaking to the relatives, they stated that there should be room for the values and standards of residents. Unnecessary rules should be abolished. Residents should be able to behave like they did at home. They should be free to read a newspaper or watch television. At home, residents were also in charge of their daily lives. People should be allowed to smoke a cigarette. A resident’s autonomy should be respected as much as possible, with a minimum of interference, not being forced (to eat, drink or wear certain outfits), and to make your own decisions in life, despite obvious financial constraints.

“No, there is no such thing as self-direction here. After 5 o’clock things shut down in this building. The door is simply being locked. You don’t lock your own living room at 5, do you?” [relative] “Even though my mother wants a specific type of incontinence material, she gets another type she does not want. As the other type would be too expensive, and is available for nighttime only. This is not beneficial to feeling home.” [relative]

The autonomy of residents is mentioned by the professional caregivers as important for the development of a sense of home. The degree in which residents have control over their own lives may be in conflict with the rules set out by the organization, the resident’s independence and the limited understanding of one’s physical or mental condition. The care professional work with the best of intentions and try their best to care for the residents, and make them feel at home. At the same time, they have a care schedule full of tasks to complete.

“There is difference in existing and new clients. In our ward, the recent arrivals want to go to bed late.” [staff] “Yes, we all say that people are free to do this and that. These are nice phrases and intentions, but it cannot be realized in practice” [staff]

Involvement of relatives

Having family around you, whether it is through having photographs in the private room, by making telephone calls or by having relatives visiting, is important to a vast majority of residents to experience a sense of home. Real visits by relatives cannot be replaced by photos or telephone calls. Being visited by grandchildren is appreciated, but at the same time there should not be too many visitors at the same time. Being visited by a spouse and doing things together, such as making outings, is valued. Many children take care of small tasks as well. Being visited by relatives seems to be more important than being assisted by them.

“This place needs to be as attractive as possible for the children”. [resident] “If I want see my daughter, all the way in New Zealand, then I can use a computer. I can use Skype”. [resident]

Relatives wished to participate in the lives of residents. Being extended a warm welcome or being greeted by staff is essential for relatives. So is having a high quality relationship with staff. If relatives felt welcome, they were inclined to visit more often. The fact that in some nursing homes, they are allowed to take coffee themselves and that they feel welcome, are incentives for visiting. Some relatives mentioned the distance between relatives and staff, like there is an ‘us against them’ situation. Relatives feel that they need to step up for their relatives and give them a voice. Relatives want recognition as an expert, too. At the same time, relatives expressed that they have insufficient knowledge of treatment of their loved-ones by the staff. Relatives worry about the negative image of the nursing home in the community and hope to contribute to a more positive image themselves.

“In the early days when we played cards with my uncle, we brought our own coffee. The staff asked us what we were doing. We answered by saying that we were not allowed to take coffee ourselves. And then the staff responded by saying that that was about to change right away! Ever since, we were allowed to make coffee ourselves.” [relative] “Having to fight for your loved-one has nothing to do with a sense of home. It is a pile of frustration. Which keeps on piling up.” [relative]

Staff said that it is important to engage in a dialogue with relatives, and to inform relatives as much as possible about the situation in the nursing home. Hospitality should be offered to relatives and other visitors. Relatives should not experience any barriers when wanting to approach a member of staff. The relationship between staff and relatives is not always optimal, and offers room for improvement.

“I wish we had a positive collaboration with the relatives (laughter)… I would like that so much.” [staff] “The moment you enter the room, and you see the family sit together with mother, and they bring something nice to eat, and the daughter is making a cup of tea. Yes I love seeing that [as a care professional].” [staff]

Engagement with others and activities

Residents wish to engage with others in a social manner and social contacts are an essential part of life. It is appreciated when people can walk in and out of the ward in order not to feel lonely. Residents wish to be part of a group, although being together with others also means giving up some degree of privacy. Despite living in a group, residents can still experience feelings of loneliness or being excluded from a group. The quality of these social contacts is rather an essential element to the residents. Engagement with other residents takes place when having conversations, when eating together, although it happens that other residents are not interesting enough to interact with.

“In the living room, people often sing songs. I sang along aloud and danced a lot”. [resident] “A sense of home is being together”. [resident]

People wish to participate in activities to engage in a meaningful daily life. Preferably, these activities are something residents did in their earlier years. The residents also wish to be able to plan themselves how they wish to spend their days. Some explicitly stated that they have worked all of their lives and that they like that they are being taken care for. Habits and routines are mentioned as important aspects of daily activities. Organized leisure activities were mentioned to give distraction, although residents wondered if these were useful and meaningful. Activities people conducted themselves were reading, listening to music and playing puzzles, as well as drinking coffee and cycling. Some also mention assistive technologies which are needed to continue doing enjoyable activities.

“In the morning, I spend my time cleaning.” [resident]

According to the relatives, having social contacts is considered to be essential for having a sense of home. Doing all types of homelike and household activities are opportunities to do things together with others. Relatives mention the presence of inviting meeting points as an opportunity for engagement, for instance, the fire place or the kitchen table. Residents should be able to receive visitors if they wish to. The stimulation of senses in the communal rooms, for instance, through music, odors of cooking, making paintings and touching each other gently, is mentioned by relatives. It is important that there is sufficient attention for each other and that people have a sense of belonging. Negative aspects are unwanted contacts, of having to engage with people you did not choose yourselves. In general, relatives stress that there is insufficient engagement with co-residents, and that most engagement is with relatives, pets and acquaintances.

“When no one comes to visit, it can be the most homely place but it is no good.” [relative]

According to staff, residents should be stimulated to participate in doing activities, which can be done in a group or as an individual. The care professionals also stated that the nursing home should be part of a larger community, and the outdoor world should be an integral part of life in a nursing home.

“We should bring the neighborhood indoors!” [staff]

According to staff, daily rituals are important for a sense of home. Engaging in familiar household activities indoors and outdoors is a form of introducing familiarity, which, in turn, contributes to sense of home. Residents should be able (or stimulated) to recognize things, including the layout of the ward, things from their past, activities, and personal items. Providing residents with structure, and a small-scale environment helps to create familiarity. Being familiar with the professional caregivers is mentioned by this group as being important: residents should know who looks after and cares for them.

“I often think of them as a group of people. All of them are individuals, and came here with a totally different background, and still they live in a sort of family situation. And when someone passes away, there needs to be another place for someone else.” [staff] “A sense of home. Familiar faces. All very important. Well, this is something we hear often from residents at the moment. ‘Another stranger again!’ ” [staff]

Quality of care

Care should be individualized as much as possible, according to the residents, in order to feel at home. Residents experience a continuous tension between trust and mistrust towards care professionals, though the help of care professionals is highly valued. There should be space for culturally different emotional expressions. The treatment of residents should be more mature. The experience of safety and security is an important feature of care professionals according to the residents. Volunteers are important, as they make soup or read a newspaper. The characteristics of care professionals are mentioned often, for instance, being open to talk about problems and being a good aide. Resident talked around the issues of conflict and critique, because of their dependence.

“Of course, I can say ‘no’ [to the care professionals], but when you need their help at a later moment, then they will turn down on you, too.” [resident] “The mood the staff is in is important.” [resident]

Despite some of the criticism of residents, overall, a professional approach to care is valued, as it is also a source of security and peace to the relatives. Relatives indicated that there should be sufficient trust in the caregivers that they execute –at least- the essential elements of basic care. Relatives wish that they have a say in how their loved-ones are cared for, and wish to have a voice in the treatment and approach to care. The quality of care also involves the approachability of staff. Some relatives understand the negative behavior of residents and have empathy for their loved-ones given the situation. According to the relatives, there are certain characteristics of qualified staff, namely, being motivated, having an eye for the emotions of relatives, being able to create a positive atmosphere, being a good colleague to other staff members, considering the values of individual residents, and having a sufficient degree of education. Moreover, a good care professional is able to communicate with relatives and enter a dialogue. There should be room for the own initiatives of relatives. The overall atmosphere of a nursing home is very important, people wish to be part of a community, which feels safe and secure, and which offers opportunities to do typical things you do at home. There needs to be a sense of trust that their loved-ones are in good hands.

“As long my mother is taken care of well, I feel comfortable too.” [relative] “Staff are the most important! They take care of the atmosphere in the nursing home and that is so important.” [relative]

When relating to the quality of care, care professionals stated that their empathic abilities and ‘having a heart’ were of great importance to the development of a sense of home. The factors of the quality of care could be best described as the core of the care professional: head, heart and hands. Staff stated that they need to get to know the residents and their backgrounds. They can contribute actively to the atmosphere in the groups of residents, by being near, by showing signs of intimacy, or by the provision of undivided attention (not having to share time with others), comfort and a sense of security to the residents.

“It is about being able to put a smile on the face of the resident. It is the small things that matter most.” [staff] “You can have a lot of colleagues with many qualities, but if they don’t have a heart for my residents, then I don’t want them to be around me too.” [staff]

Connection with nature and outdoors

This theme emerged only from the data from residents and relatives. Many residents wished to be able to go outdoors, or appreciate the view through the windows, and be connected to nature. A view of green spaces, trees and gardens is mentioned by residents from the rural nursing homes. People wish they could walk around outdoors. Animals in the garden are appreciated. Some residents used to live in a farmhouse and animals were an integral part of farm life. In the rural nursing homes, residents wished they had more shops around. A view, whether connected to nature or otherwise, is generally appreciated.

“Yes, I love being outside”. [resident] “I have a good view of the road and the round-about. So from that chair I can see everything, and I like that”. [resident]

Having access to a garden as in the old days is mentioned as being important in rural nursing homes, according to the relatives. A nice view, with animals, plants and nature is mentioned by relatives in one of the urban nursing homes. Liveliness, animals (bird cages, chickens) are important contributors to a sense of home. In case of one of the nursing homes, the surroundings are a forested area which is ideal for walking. Keeping a vegetable garden is appreciated, especially when what is produced is eaten by the residents.

“This is the new greenhouse of the nursing home. She always had one herself at home, as well as a vegetable garden. Until a year ago she had chickens as well. About three. And she always had fresh eggs. To her this is a homelike thing.” [relative] “I was not allowed to bring my dog. The ‘non-sense’ of home.” [relative]

This theme emerged only from the data from residents and relatives. Many of the residents expressed that they have trouble getting used to living in a nursing home but that they have to cope. The old home will forever feel like the last true home to many. Some try hard to make the nursing home feel like home, for instance, by decorating the rooms themselves. Apart from losing a home, moving also means losing a spouse who was always nearby. Some spouses have died in the meantime as well. Being accepted for co-residents makes up for some of the losses. People should be able to feel meaningful, which is part of the coping strategy and the development of a sense of home. There are many ways to cope with the new situation, for instance by accepting the new living situation, its social context, being dependent of others and because of physical limitations. Instead of coping, some of the statements sound more like resignation or acquiescence.

During the interviews, many resident showed sign of strong emotions, which they tried to hide. Some people like to return home during the weekends.

“Well, it is nice here, but I will never get used. I’d rather return to home, but it increasingly getting difficult. You just know you no longer can do it.” [resident]

Relatives saw that their loved-ones are trying to cope with the fact they now live in a nursing home. Over time, they see that their loved-ones are trying to regain some of their old routines, such as cleaning and dusting. Some regain some sense of home, as they experience a sense of security to engage in small tasks. Some people cannot cope with the new living conditions, will not accept the new living situation and wish to return home.

“She always did the [cleaning] at home, but not for some time when she came to live here. But now, she speaks of this place being her home. She no longer needs to leave. And when she came to accept her conditions, she regained some of her old tasks.” [relative]

Organization and facilitation of care

This theme emerged only from the data from relatives and staff. Relatives wished to see familiar faces and people in the wards. Relatives like to engage with a fixed group of professionals, in which there is a limited (natural) personnel turnover. Care staff should be easy to approach, also in terms of the building itself. Being locked up inside a nursing station is not appreciated. Relatives wished that it was possible to keep spouses together in the nursing home, and that this was facilitated by the organization. Relatives mentioned that writing reports and using computers in the presence of residents turned the home into an office, even though the caregiver was present instead of being at work in a separate room. A nursing home should also be a community that feels safe and secure, and which offers opportunities to do typical things you do at home. Relatives wished for private rooms and closets that could be locked, as belongings got lost.

Staff indicated that they need time, hands, financing and interns to provide adequate care to their residents. Only if these preconditions are met, can they feel being able to provide a sense of home to the residents. Technology is seen as a support tool for care, communication and activities, but education and training is needed. Other requirements are having a sufficient amount of parking space for the car (no need to be stressed in the morning when having to look for a free parking space), having a lack of managerial support, and having sufficient storage space for work-related items. Some members of staff take the freedom to buy items to improve the interior design of the ward.

“Everyone who needs something from you, clings to you. And so that makes you react differently towards other people. You are becoming curt with someone, as there are a hundred thousand other things waiting for you because it is you and four other flex workers.” [staff]

This theme emerged only from the data from relatives and staff. According to the relatives, residents should be heard and should still ‘count’ or ‘matter’. There should be sufficient attention for the consequences of loneliness. Residents should be able to continue living their old lives with their old habits. Residents are entitled to live a life, despite a possible dementia diagnosis. Every person has certain qualities that can still be appreciated by the nursing home organization. Residents have the right to be heard, observed and recognized and acknowledged. Being dressed correctly and wearing make-up are integral aspects of this theme, although the terminology of dignity was not mentioned directly by the participants.

“Well, this man has his private room, but he sits in the living room all day long and he says nothing and no one says anything to him because he gets completely ignored because he cannot speak.” [relative]

The well-being of residents is mentioned in all three focus groups. All residents have the right to exist, and should not feel as a person that is no longer part of society. Care professionals should underscore/ enhance to the residents their sense of meaningfulness in order to provide them with a sense of home. This can be achieved by giving responsibilities to residents is a part of the set of tasks for the care professional, for instance, taking care of plants or being able to decorate a room according to one’s own preferences.

“The people who are with us are taken out of society. They are placed within the walls of an institution, and they, if it were, I’m sorry to say, stop existing. […] The only thing they still have are the nurses who are there for them every day. […] They should have a connection to society, and have the feeling that they still exist”. [staff]

This study found that residents, their relatives and professional caregivers all found 6 aspects important in contributing to being at home in a nursing home. These include a familiar interior design and building, eating and drinking in ambience, having autonomy and control over daily life, involvement of relatives, being engaged with others and in activities and having a good quality of care. In addition, for residents and their relatives it was important that they experienced a connection with nature and outdoors and that they learned to cope with the new situation. Professional caregivers and relatives stated that the organization of care needs to facilitate the sense of home and that it is important for them to make residents’ matter.

Reflections on the results

The factors identified in this study seem to have a relationship with the experienced sense of home in this study seem consistent with the findings of earlier studies, for instance, the systematic review by Rijnaard et al. [ 10 ] and the study by Sixsmith [ 25 ]. This field study showed that the themes identified by the study by Rijnaard et al. [ 10 ] are also valid for the Dutch context. For instance, dining at the table like residents were used to, participating in household tasks, having access to a garden and familiar interior design. The relatives wish to be involved by the care professionals and to be informed about what is going on in the facility. Having a mutual conversation about needs and wishes can help the relatives to feel more free and more at home Intervention programs to increase family and staff have been developed, such as the Partner in Caregiving program [ 26 ]. The Partner In Caregiving program facilitates positive relationships between family caregivers and professionals through intensive training on effective communication, empathy development and conflict resolution. Positive effects such as improved attitudes and reduced conflict with family have been reported [ 26 , 27 ]. Furthermore, in order to provide person-centered care, assessing and honoring residents’ preferences is a fundamental step, especially in relation to interpersonal relationships, coping strategies, personal care and healthcare discussions [ 28 ]. Evidence based tools are being developed to assist this process, such as the Preferences for Everyday Living Inventory [ 29 ], in which staff, family and residents reflect on personal preferences in the care process. Moreover, communication strategies should direct attention toward the person living in the nursing home and what they are capable of, as opposed to focusing on the disease and the care tasks required [ 30 ].

The atmosphere within a nursing home environment should be good, and this is facilitated by giving the residents as much free space as possible, allowing them to make their own choices. Caregivers need to take sufficient time to get to know the residents, and should be empathic at the same time. The creation of a homelike atmosphere is important, without making the environment look too cluttered. Family involvement in order to support the resident is an aspect mentioned by the care professionals. Tuning with relatives and offering hospitality are mentioned, as it may help relatives feel at home as well. The most prominent difference is the stress the three groups of participants in the current study put on food and drinks, and the specific attention for the organization of care and the impact an adequate facilitation of staff can have on the support of a sense of home. By looking at the various perspectives, a richer dataset comes to the fore, which also includes the more facilitating aspects, rather than a focus on outcomes solely.

Although the themes showed a great overlap between the groups of stakeholders, there were many subtle and more prominent differences, in which different aspects were stressed or mentioned. These supplementary views help to understand the complex phenomenon of the sense of home. For instance, in relation to the quality of care, some residents seemed reluctant to critically address or reflect on the aspects of quality of care. The current study shows that the relationship and daily interactions with staff is not always friendly or amicable in character, but rather functional and social in nature. The research team found that there is a taboo on critically discussing the subject of quality of care, as residents wish to maintain good relationships with staff as they experience a dependency on these professionals. This dependence is hardly mentioned by the residents, although it is a frequently discussed topic among relatives. Next to professional competence, quality of care is highly influenced by the care relationship. Communication, having an open dialogue, empathy and expectations all influence the relationship. Although the care professionals in our study all say to place the well-being of the resident at the center of their care, in practice this is not the reality as perceived by residents and their relatives. This highlights the need for tools to facilitate the discussion on quality of care between residents, their relatives and professional caregivers. Currently, this is predominantly focused on physical health related aspects, such as indicators for pressure ulcers, incontinence or falls, but new indicators and methodologies should be explored to facilitate the dialogue. Feeling at home may be an essential element for providing person centred care and may have an impact on contributing to quality of care [ 31 , 32 ].

Having a private room was deemed important by all three groups, although it seemed that relatives valued having a private room more than the residents did. The idea of a parent having to share a room with a co-resident and the child not being able to have private conservation with a parent seemed to be a worrisome notion. Having the opportunity to decorate the private room according to personal preferences was mentioned by all three groups, although practice learns that this is not always facilitated in a liberal fashion. Van Hoof et al. [ 9 ] showed that personal belongings can help develop a sense of home among residents of Dutch nursing homes, and that residents with larger rooms have better opportunities to bring goods from their former homes. Among the building-related positive attributes to a sense of home were familiar environments, being together, being able to go outdoors, and having some degree of control over one´s own life. Negative attributes were long corridors, storage spaces, and static interior design and decoration. Another statement made by residents was that they “felt like being in a hotel”, which is very different from a sense of home. It reflects the dual nature of a nursing home as a place of residence (not home per se), and a place for receiving care services.

The current study also showed that the nursing home may be a house to the residents, it is not necessarily a home, too. In contrast to the own home people used to dwell, there are many unfamiliar faces around, there are relatives of co-residents who are there to visit them, and there are changes in staff. At home, you commonly know the people that pass through your front door. Household activities are carried out by others, for instance, cleaning staff. At home, there is a seemingly full autonomy about the things people do and don´t. To date, there are many assumptions being made in nursing homes, for instance, that residents should be stimulated to help in activities and do household tasks. This study showed that many of these assumptions may not be entirely valid for the total nursing home population, which may hamper their development of a sense of home, and, in turn, quality of life. Many of these assumptions are made by relatives and care professionals, and these need to be further verified in future studies. Despite the best of intentions, some of these assumptions and opinions may not be shared by the residents, for instance, the ´adversary´ effects of regulations, the need for measures to improve safety and security, and the need for hygiene. Such measures may limit the degree of freedom of residents, and be a cause of frictions. Among the positive things that should be maintained, according to the three groups of stakeholders, were the large selection of activities (watching TV, sports, music and trips), familiarity and homelikeness, the ´sense of family´ and hospitality, the freedom to speak your mind, being able to make meals yourself, feeling a part of a group, and having animals around. Among the negative things that should be improved were having sufficient time for the resident and personal contact, not enough time to get to know each other, labelling of items and the lack of information, the lack of leisure technologies, and locking rooms and closets.

In recent years, several new alternative settings for nursing homes have been developed, focusing on small-scale, homelike care environments. Examples include Green Houses in the USA [ 33 , 34 ], small-scale homelike care environments in the Netherlands [ 35 ] and green care farms [ 36 ]. In these homes, a radical redesign of the physical, social and organizational environment has been implemented, much according to the findings of our study indicating important factors contributing to a homelike feeling. Evidence suggests that promoting a sense of self and normality, for example knowing the person, welcoming family in the nursing home, providing meaningful activities, being in a personalized environment and experiencing flexibility and continuity are perceived as highly positive in these environments [ 31 , 37 ].

Reflections on the methodology: strengths and limitations

In the current study, photographs were taken first after which interviews were conducted. Sometimes there was a substantial period of time between them (about two weeks). In future studies, the researcher could undertake the photography together with the participants and conduct the interviews directly afterwards, or even during the photography sessions. The participants will be able to remember why a certain picture was taken in the first instance and provide a better description. This is particularly true when it takes some weeks to have the photographs developed (as traditional photography is getting out of fashion and is no longer optimally supported by the market chain). Using a digital camera is more costly, but solves the challenge of having to wait for the development of photos. In addition, using disposable cameras resulted in half of the photographs being blurred and, therefore, not useful for the study. When taking photographs together with the participants, one can do a secondary check with the participants by again showing the photographs and the transcripts in a later stage as a form of member check. In the current study, individual interviews and focus group sessions were conducted. In the focus group sessions, there was less space for individuals to share their experiences and thoughts, although the mutual exchange of ideas were a source of inspiration and yielded direct take home messages for the participants. This methodology reflected the approach know as a photovoice study [ 20 ]. In addition, for future studies we propose that the method be repeated with instructions to take photos of experiences that contribute to the sense of home or detract from it; the literature suggests that experiences of “not home” or “homelessness” are powerful detractors to the global sense of home.

In this study, both residents with a psychogeriatric, physical or combined diagnosis for admission were included. No distinction was made between the levels of cognitive functioning, for instance, due to the presence of dementia syndrome by considering the outcomes of the Mini Mental State Examination [ 38 ]. The same is true for depressive symptoms, which are commonly found in a large portion of nursing home residents [ 39 , 40 ]. Depressive symptoms among nursing home residents are correlated with unmet and global needs [ 40 ]. In future studies, a distinction may be made between residents with various stages of dementia and depressive symptoms, and how these symptoms may impact the sense of home, coping behaviours and adaptation, and the way the home environment is shaped. This recommendation is based on the fact that some participants from the three groups indicated that there were differences in the way wards were decorated. In psychogeriatric nursing home wards, there was more attention spent on decoration and having nostalgic items around. In a ward for physically impaired residents, there was a focus on photographs and activities and trips. Some of the care professionals indicated that by participating and taking photographs, they became more sensitized about the role of the physical environment. It made them aware of both positive and negative aspects on the work floor. Therefore, the strategy may also be used for sensitizing processes on the work floor, although the overall effectiveness and the sustainability of changes is unknown. Some relatives provided feedback that taking 25 photographs was much, and that they took random photos in the end in order to fill up the reel. Some residents indicated that they thought the phenomenon studied, i.e., the sense of home, was complex. Some people took pictures of objects, for instance a television set, but spent hardly any attention to this technology during the interview. One should question the value and meaning of such photographs for the purpose of the study.

This study found that a familiar interior design and building, eating and drinking in ambience, having autonomy and control over daily life, involvement of relatives, being engaged with others and in activities and having a good quality of care are important themes, identified by all three groups of stakeholders, in experiencing a sense of home in the nursing home. Nursing staff did not focus on the role that nature, the outdoors and coping play in the establishment of a sense of home, which provides room for improvement. In addition, the themes that were identified had different meanings and connotations based on the roles the stakeholders have.

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Acknowledgements

J.M. Botermans, E.A.H. Hennen, M. van de Veerdonk, E.E.M. van Leuken, L.G. Westeijn, T.C. Geerits of Fontys University of Applied Sciences, W. Pocornie of EGM Architecten, and L.J.M. Hoek and H.C. Beerens, of Maastricht University, CAPHRI School for Public Health and Primary Care, are thanked for their role in the data collection. M.B. Vossen and W.P.H. Bosems are thanked for their role in project management. All participants of the sessions are thanked for their willingness to volunteer, and share their views. BrabantZorg, Vitalis WoonZorg Groep, Savant Zorg and Archipel Zorggroep are thanked for their participation.

The RAAK (Regional Attention and Action for Knowledge circulation) scheme, which is managed by the Foundation Innovation Alliance (SIA – Stichting Innovatie Alliantie) with funding from the Dutch Ministry of Education, Culture and Science (OCW), provided financial support for this project (SIA project number 2014-01-05P, Project Het verpleeghuis van de toekomst is (een) thuis ). RAAK aims to improve knowledge exchange between SMEs and Universities of Applied Sciences in the Netherlands. SIA-RAAK had no role in study design, in the collection, analysis and interpretation of data, in the writing of the report, and in the decision to submit the paper for publication.

Availability of data and materials

The transcripts of the interviews and focus group sessions are available in Dutch only, and can be requested from the first author. The photographic material gathered in this study is available as analogue material, and cannot be shared for privacy reasons.

Authors’ contributions

JvH and HV made substantial contributions to conception and design, and analysis and interpretation of data, and drafted the manuscript. BMJ, EF, KAN, ELMZ, and JJWMS were responsible for the acquisition of data and the interpretation of data. BMJ, AE, SLM were involved in critically revising the manuscript for important intellectual content. EJMW made substantial contributions to conception and design, and was involved in critically revising the manuscript for important intellectual content. All authors read and approved the final manuscript.

Competing interests

The authors declare that they have no competing interests.

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Ethics approval and consent to participate

Informed consent was obtained from the participants (for residents, in conjunction with their initial family caregivers) by signing the given consent forms. The need for ethical approval was waived (Fontys Committee for Ethics in Research) due to the character of the study. In order to guarantee the anonymity and privacy of participants, names of people and institutions, appearing in quotes, were deleted from the written texts or were changed.

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van Hoof, J., Verbeek, H., Janssen, B.M. et al. A three perspective study of the sense of home of nursing home residents: the views of residents, care professionals and relatives. BMC Geriatr 16 , 169 (2016). https://doi.org/10.1186/s12877-016-0344-9

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What about the fundamentals of nursing—its interventions and its continuity among older people in need of home- or facility-based care: a scoping review

• O. M. Nordaunet 2 , 1 ,
• E. R. Gjevjon 1 , 3 ,
• C. Olsson 2 , 1 ,
• H. Aagaard 1 &
• G. Borglin 1  

BMC Nursing volume  23 , Article number:  59 ( 2024 ) Cite this article

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This scoping review investigated and descriptively summarised previous research about fundamental nursing, its focus (what care needs are described, how is it described and by whom is it described), continuity of care (is it described in relation to fundamental nursing) and possible nursing interventions or activities targeting older people’s fundamentals of care needs in home- or facility-based care.

This scoping review was carried out following the steps of Arksey and O’Malley’s methodology and PRISMA-ScR reporting guidelines. Searches were conducted in PubMed via NIH, CINAHL via EBSCO and PsycInfo via ProQuest for the time period between January 2002 and May 2023.

Forty-two studies were included where the majority had been conducted in a facility-based care context. Nutrition—or rather nutritional care activities targeting eating and drinking—was the most frequently described fundamental care needs addressed. After this came personal care such as cleansing, dressing, oral care, skin, and foot care. Few studies addressed more than one fundamental care need at the time. The nursing staff described fundamental nursing as complex, comprehensive, and demanding. Older people and relatives described a gap between the fundamental nursing provided and their perceived need for support. Less attention was given to older peoples relational and psychosocial needs. Identified nursing interventions mainly targeted physical care needs. Our findings also implied that interventions focusing on fundamental nursing were described as feasible in practice with favourable or moderate results, while long-term effects were difficult to detect. No studies were identified focusing on fundamental nursing in relation to outcomes such as continuity of care.

Fundamental nursing was mainly described in relation to physical care needs, which were essentially conducted within facility-based care contexts. Interventions and activities primarily focused on one fundamental need at the time, mainly within the physical domain. No nursing interventions were identified focusing on relational and psychosocial needs where continuity of care can be viewed as a relevant outcome. Such limited focus are especially concerning as research has highlighted the importance of that older people with complex care needs can benefit from a holistic and person-centred approach i.e. fundamental nursing.

Trial registration

Open Science Framework https://doi.org/10.17605/OSF.IO/XJ39E

Protocol: http://dx.doi.org/10.1136/bmjopen-2022-069798

Peer Review reports

The core of nursing is care [ 1 ]. Care focusing on relational, psychosocial, and physical needs such as mobility, hygiene, nutrition, and elimination is well-known by nurses as the fundamentals of care. Henderson already recognised fundamental nursing in relation to the fundamentals of care as ‘assisting people to do the things they would normally do for themselves if only they were able’ (p. 149) [ 2 ]. Hence, fundamental nursing addresses patients’ comprehensive fundamentals of care needs and is mainly portrayed as both complex and challenging care rather than as common sense [ 3 ] or basic care [ 4 ].

Recently, fundamental nursing and the fundamental care needs have attracted a lot of interest in research in nursing [ 4 , 5 , 6 , 7 , 8 , 9 , 10 ]. This renewed attention is likely the result of several important organisational and societal changes within the Nordic countries and Europe. We know that the reconstruction of healthcare services, such as the downsizing of specialist care (hospital care) and increase in home- or facility-based community care, has coincided with unprecedented demographical challenges [ 11 ]. European statistics have shown that the potential number of older people in home- or facility-based care is estimated to increase from about 31 million (2019) to more than 38 million by 2050 [ 12 ]. In Norway, the figures indicate that home-based nursing has increased the quickest out of all healthcare services [ 13 ]. Paralleled with this, facility-based care (here nursing homes) has, at least in the Nordic countries, gradually become a care service only for those older people with severe cognitive or physical impairment. The notion is that older people with functional disabilities should be given services at the lowest level of efficient care to remain at home as long as possible [ 14 ]. Research indicates that most of these older people are likely to value their independence, and preferer to remain in a familiar environment where they feel like they belong [ 15 , 16 ]. However, many of these older people are and will be living with multimorbidity’s, which can be described as people with two or more medical diagnoses and complex care needs [ 17 , 18 ] and, hence, requiring fundamental nursing over time.

It is well-known that nurses’ ability to provide care in a coordinated and meaningful way is being challenged by underfinanced, fragmented and task-oriented healthcare services [ 19 , 20 , 21 ]. These challenges affect both their working conditions, workloads and quality of their nursing actions while also reducing the ability to perform person-centred care [ 22 ], which impacts the continuity and quality of care. When resources are low, fundamental care needs are frequently overlooked [ 23 ]. The reasons for this vary, from understaffed wards to a devaluation of the fundamentals of care [ 6 ]. Fundamental nursing focusing on older persons’ needs and preferences consistently over time in a safe, timely, effective, efficient, equitable and person-centred manner promotes continuity and quality of care [ 4 , 24 ]. However, lack of continuity of care has been found to increase hospitalisation [ 25 , 26 ], mortality [ 27 ] and healthcare costs [ 28 ]. Older people have reported to complain about the involvement of different professionals in their care, lack of coordination and continuity of care [ 29 ].

Bentzen et al. [ 30 ] stated that high work pressure leads to having to choose which fundamental need to address and which to down-prioritise, sometimes at the cost of patient safety. Research shows that nurses are valued by older persons to ensure optimal and safe care [ 7 , 8 , 24 ], raising the argument that available, competent and skilful nurses’ matter. Currently, research into nursing regarding the fundamentals of care has mainly focused on the secondary care context [ 9 ]. Research conducted in the latter area highlights that care needs, such as oral care, hygiene and mobilisation, are overlooked or down-prioritised [ 31 ]. In contradiction, Mandal et al. [ 32 ] have revealed that pain management, medication administration and technology-oriented tasks are rarely overlooked or down-prioritised by nurses. Overall, it appears as if, in the secondary care context, the fundamentals of care might be undervalued and perceived by nursing staff as rudimental [ 7 , 33 ], and of little or no value for them to engage in [ 8 ]. How transferable this is to home- or facility-based care has not yet been well described. Thus, investigating and descriptively summarising which type of fundamentals of care and what sort of interventions or activities nurses engage in related to older people in home- and facility-based care is vital to ensure care reflecting both quality and continuity in this setting. Ample research [ 34 , 35 , 36 ] has highlighted that older people with complex care needs would benefit from care delivered within a holistic and person-centred approach where particularly important outcomes of care, such as safety, dignity and communication, have a natural position [ 37 , 38 ]. Then again, whether these latter views are shared by the older people and their significant others regarding their fundamentals of care needs is, to date, little explored within the home- or facility-based context. The same is true for the importance of continuity of care regarding caring for their needs. Pentecost et al. [ 10 ] implied that the importance of improving patients’ experiences in relation to the fundamentals of care while also promoting a consistent nursing practice and increasing attention to how nurses and patients can work together to meet patients’ individual care needs. Thus, in-depth knowledge about how nurses themselves, older people and their relatives describe and experience these issues appears critical. This is particularly the case because being cared for by the right health professionals, as well as receiving fundamental nursing based on needs, values, and preferences (c.f. [ 39 ]), can be viewed as an obvious reflection of quality of care. This knowledge can support the development of relevant nursing interventions targeting older people’s fundamentals of care needs while also ensuring the continuity and quality of care delivery within the home- or facility-based care context. Thus, the present scoping review aims to investigate and descriptively summarise previous research about fundamental nursing, its focus (what care needs are described, how is it described and by whom is it described), continuity of care (is it described in relation to fundamental nursing) and possible nursing interventions or activities targeting older people’s fundamentals of care needs in home- or facility-based care.

This scoping review was carried out following the steps of Arksey and O’Malley’s [ 40 ] methodology and reported in accordance with The Preferred Reporting Items for Systematic Reviews and Meta-Analysis Extension for Scoping Reviews [ 41 ]. Scoping reviews are particularly useful when the topic is complex because their methodology enables a systematic charting of findings and supports the identification of research gaps [ 33 , 34 ]. The latter becomes particularly important when exploring broad topics while also aiming to include all types of research designs, for example, qualitative, quantitative, and mixed methods design. The review protocol was registered a priori with the Open Science framework ( https://doi.org/ https://doi.org/10.17605/OSF.IO/XJ39E ). Additionally, a published protocol preceding this review can be located at https://bmjopen.bmj.com/content/13/3/e069798.info .

Stage 1. Identifying the research question

A modified version of the PICoS framework, for example, population; phenomena of interest; comparison; outcome; and study setting (Table  1 ), was used to support the development of our research questions and acted as eligibility criteria [ 42 , 43 , 44 ].

The following research questions were posed to the literature:

What type of fundamental nursing (Table  2 ) is described in the literature as targeting older people’s fundamentals of care needs in home- and facility-based care contexts?

How is fundamental nursing targeting the fundamentals of care described and experienced by key-stake holders (Table  2 ) in home- and facility-based care contexts?

What fundamental nursing interventions (Table  2 ) are described in the literature targeting older people’s fundamentals of care needs and/or continuity of care in home- and facility-based care contexts?

Stage 2. Identifying relevant studies

To support the identification of relevant studies and be able to decide upon reasonable searches, all core concepts of importance for the topic in focus were carefully operationalised (Table  2 ). Searches were conducted in PubMed via NIH, CINAHL via EBSCO and PsycInfo via ProQuest. Comprehensive and adapted search strategies (additional file 2 ) were developed, tested, and evaluated, by the research team together with a librarian. The process of developing relevant search strings begun in PubMed and were conducted in a stepwise iterative manner by the first (OMN) and last author (GB). The first author drafted a tentative search string, conducted an initial screening search. The latter were thereafter discussed and evaluated with the last author before further adjustments were done. Finalised PubMed search strategies then became the main template for the development of search strings in the two remaining databases.

Database-specific headings and medical subject headings were used. Search blocks were applied combined with keywords, synonyms, and the Boolean operators AND/OR [ 55 ]. Limits were set to include English written peer-reviewed primary research published between 1 January 2002 to 12 May 2023. The time limit was set based on the fact that long-term care contexts have undergone considerable changes during the past two decades [ 56 ].

Stage 3. Study selection

Eligible publications for each of the three research questions were imported individually and grouped in EndNote by the first author [ 57 ]. In EndNote, an initial screening supported the removal of duplicates, editorials, commentaries, and secondary research. The remaining publications were then imported to Rayyan [ 58 ]. All authors conducted a joint a title—abstract screening guided by the developed PICoS determinants (Table  1 ). We screened, independently of each other, 567 papers in pairs to assure an agreement on what to include and exclude. Thereafter, a stepwise title – abstract approach was utilised where the first (OMN) and last author (GB) “sifted” [ 59 ] through, in close collaboration, the total numbers of eligible papers for each research question (Fig.  1 ) [ 60 ]. During the whole of this process conflicts were discussed and if necessary, solved by a third reviewer. The process ended with handsearching the reference lists, a backward citation tracking, of the papers evaluated as to be read in full text [ 61 , 62 ].

PRISMA flowchart

Stage 4. Charting the data

The extraction chart was piloted by the first author (OMN) and cross-checked by the research team (ERG, CO, HA, GB). Hence, a random sample of 10 eligible papers conducted with either qualitative, quantitative, or mixed methods was extracted. The piloting resulted in minor adjustments, i.e., in what order extracted data was presented. Data extraction included country of origin, year, authors, design, aim, method, and results. Additionally, data facilitating an in-depth exploration such as type of home- and facility-based care contexts, whose perspective, type of nurses, descriptions and outcome(s) of nursing interventions were also extracted. The first author (OMN) conducted the initial data extraction in close collaboration with the last author (GB). Thus, full text reading ( n  = 42) and data extraction was done in close collaboration between OMN and GB.

Quality assessments were conducted by the first author (OMN) and the assessments were continuously discussed with the last author (GB). Relevant critical appraisal tools for each individual design, for example, the Critical Appraisal Skills Programme qualitative checklist (CASP) [ 63 ] and Mixed Methods Appraisal Tool (MMAT) [ 64 ] was used. Assessing included papers quality supported us to identify research of poorer quality. It additionally supported us to formulate ´clear statements about possible knowledge gaps as well as saturated areas not requiring further explorations. The assessment of ethical standards was conducted using Weingarten et al.’s recommendation for evaluating ethics in systematic reviews [ 65 ].

Stage 5. Collating, summarising, and reporting the results

Extracted data evaluated to answer Q1, Q2 (Additional file  3 ) and Q3 (Additional file  4 ) underwent a basic descriptive analysis in accordance with recommendations [ 66 ]. The first author (OMN) took the lead in the process of analysis. This entailed repeated readings and summation of content, while the main focus was on the descriptive and manifest content and on organising and categorise extracted data into patterns [ 67 ]. The descriptive analysis and the emerging findings was discussed between the first (OMN) and last author (GB) but also in monthly meetings with the rest of the research team (ERG, CO, HA). Extracted data evaluated to answer Q3 was transferred into a table to summarise and describe the key intervention components and outcomes. Key information from each paper were integrated and summarised with the support of the PAGER framework (pattern, advances, gaps, evidence for practice and research recommendations) [ 67 ]. This strategy supported the research team to develop an overview model of the main results (Fig.  2 ) but also to streamline the presentation of complex data i.e. making the main result easier to grasp. Further development of the PAGER framework has been suggested by Bradbury-Jones et al. [ 67 ], and we propose that the PAGER framework can support innovative solutions in providing a comprehensive overview of complex results.

In this scoping review a total of 42 papers were included (Fig.  1 ). Of these 42 included papers 32 of them was assessed to answer Q1 that is, “what type of fundamental nursing is described in relation to older people´s needs in home- and facility-based care contexts ” and Q2 that is, “how fundamental nursing is described and experienced by the key stakeholders in a home- or facility-based care context” (Additiinal file  3 ). The characteristics of the latter were that they all in all represented 4,655 participants. Older people ( n  = 3,655 [78.5%]) were in majority with a mean age of 84.4 years old and 63.4% of them were female. The second largest population were registered nurses ( n  = 235), followed by nursing assistants ( n  = 194), relatives ( n  = 161) and non-specified healthcare staff ( n  = 122). Consequently, RNs, nurse assistants and other healthcare staff only made up 11.8% of the participants in the included papers. 24 of the papers represented research conducted in a facility-based care context [ 68 *,  69 *,  70 *,  71 *,  72 *,  73 *,  74 *,  75 *,  76 *,  77 *,  78 *,  79 *,  80 *,  81 *,  82 *,  83 *,  84 *,  85 *,  86 *,  87 *,  88 *,  89 *,  90 *], six in a home-based context [ 91 *,  92 *,  93 *,  94 *,  95 *,  96 *], and two had been conducted in both contexts [ 97 *,  98 *]. The included papers represented a variety of research designs; qualitative descriptive design ( n  = 10), cross-sectional ( n  = 6), ethnography ( n  = 4), mixed methods ( n  = 3), observational study ( n  = 2) and qualitative exploratory design ( n  = 2). Five papers represented research designs such as: lifeworld design, participant observations, qualitative emergent case study, prospective cohort, and multi-methods.

Fundamental nursing was described (Q1) as mainly focusing on older people’s different physical care needs. Nutrition—or rather nutritional care activities targeting eating and drinking—was the most frequently described care need [ 68 *,  69 *,  74 *,  75 *,  76 *,  82 *,  87 *,  95 *,  97 *,  98 *,  99 *]. Followed by descriptions of personal care such as personal cleansing, dressing, oral care, skin care and foot care [ 70 *,  72 *,  83 *,  96 *], elimination [ 73 *,  77 *,  91 *] and maintaining mobility and functional ability [ 78 *,  79 *,  80 *]. Other included papers [ 84 *,  85 *,  86 *,  88 *,  89 *,  90 *,  92 *,  94 *] targeted older persons´ fundamental care needs in a more general approach. These focused on medication management, specific nursing procedures such as compression stocking application, wound care, observation (i.e., weight, blood pressure) as well as more advanced and technical nursing such as maintenance of urinary catheter, stoma and feeding tube [ 94 *]. They also described assessment of care needs [ 88 *], end-of-life care [ 86 *] and how older persons prioritise their care needs [ 90 *]. Finally, fundamental nursing also targeted older people’s activities of daily living, social care needs, involvement, and well-being [ 84 *,  85 *,  92 *]. Fundamental nursing targeting psychosocial and relational needs was to a lesser degree reflected in the literature [ 71 *,  81 *,  93 *].

Fundamental nursing was described and experienced (Q2) as complex, comprehensive, and taxing. Fundamental nursing affected a broad range of healthcare needs, ranging from physical, psychosocial, and relational, which, in turn, were described as demanding a high skillset and knowledge from the nursing staff situated within complex healthcare organisations. Nurses and older people also described a lack of communication, teamwork, and coordination of care, [ 68 *,  72 *,  73 *,  79 *,  85 *,  92 *,  97 *] which in many cases originated from inadequate support and resources [ 74 *,  75 *,  77 *,  99 *]. The nurses also described older people as frailer and more dependent than before, which resulted in an increased need for skills, knowledge, and support [ 89 *,  98 ]. Older people frequently described a gap between the provided fundamental nursing and their perceived need for support [ 71 *,  81 *,  84 *,  86 *,  88 *,  92 *]. Relatives reported more unmet needs than the nursing staff did [ 85 *]. A recurrent pattern related to the challenges of implementing evidence-based and effective nursing interventions targeting and meeting older peoples´ fundamental needs was also described by the nurses [ 68 *,  69 *,  71 *,  72 *,  77 *,  79 *,  82 *,  83 *,  89 *,  95 *,  97 *,  98 *]. Descriptions also highlighted a lack of both sufficient and adequately trained nursing personnel but also its relationship with less-than-optimal fundamental nursing within these contexts [ 73 *,  79 *,  80 *,  89 *,  90 *,  93 *,  94 *,  97 *,  98 *,  99 *]. Moreover, several papers described understaffed wards [ 73 *,  79 *,  80 *,  89 *,  90 *,  93 *,  97 *,  98 *,  99 *]. Consequently, RN frequently described that they task-shifted and delegated fundamental nursing activities to healthcare assistants and personal support workers. Thus, resulting in that they were described to contribute less to fundamental nursing [ 68 *,  72 *,  73 *,  91 *,  96 *]. The nurses additionally described they felt underequipped in relation to attending psychosocial care needs [ 71 *,  81 *,  85 *,  86 *,  93 *] because fundamental nursing was first and foremost described as being oriented towards physical care needs, and as a result, psychosocial and relational needs were at risk of being less than optimal [ 71 *,  85 *,  86 *,  89 *,  93 *].

Older people described being dependent on fundamental nursing as challenging. Needing to rely on other people to maintain otherwise daily activities, such as nutritional needs, being mobile and taking care of personal needs, was described as being in a vulnerable situation [ 69 *,  70 *,  75 *,  78 *]. In certain scenarios, older people described how being dependent on others for their fundamental nursing needs could be amplified through degrading situations, from being left on the toilet for extended periods [ 70 *], not having access to the kitchen limiting access to refreshments [ 69 *], not being involved in nutritional care [ 68 *,  75 *,  82 *,  95 *] and experiencing that calls for help were delayed and unattended [ 90 *] or finding that nursing staff were rushing mobility care [ 78 *]. Older persons described that they were not adequately cared for, involved, or invited to participate using their remaining strength and function to be engaged in their fundamentals of care [ 69 *,  71 *,  72 *,  74 *,  75 *,  78 *]. It is worth nothing that older peoples´ perspective of fundamental nursing in relation to Q1 and Q2 were represented in about 56% of the included papers [ 69 *,  70 *,  76 *,  77 *,  78 *,  79 *,  82 *,  83 *,  84 *,  85 *,  86 *,  87 *,  88 *,  90 *,  92 *,  94 *,  95 *,  99 *] whereas the RNs perspective were represented in about 25% of them [ 71 *,  72 *,  81 *,  89 *,  91 *,  93 *,  97 *,  98 *]. In four of the included papers, a minor percentage of the population were under 65 years [ 69 *,  78 *,  79 *,  82 *]. These papers were included based on the relevance of the overall population, phenomena of interest and ability to answer the research questions.

Of the 42 included papers in this scoping review 10 of them was assessed to answer Q3 that is ,” fundamental nursing interventions targeting older people’s fundamental needs or their continuity of care in home- or facility-based care contexts” (Additional file  4 ). The characteristics of the latter were that they all in all represented 1,741 participants and older people ( n  = 1,119, [64.2%]) were also in majority here. Their mean age was 84.8 years old and 80.2% of them were female. The second largest population here were nursing assistants ( n  = 291), followed by non-specified care staff ( n  = 93), and RNs ( n  = 33). RNs, nurse assistants and other healthcare staff made up about 37.2% of the participants in the included papers assessed to answer Q3. Hence, nurses’ perspective on Q3 were represented in 40% of the included papers [ 100 *,  101 *,  102 *,  103 *] and older peoples’ perspective were represented in about 60% of the papers [ 104 *,  105 *,  106 *,  107 *,  108 *,  109 *]. Eight of the papers represented research conducted in a facility-based care context [ 100 *,  101 *,  102 *,  104 *,  105 *,  106 *,  107 *,  108 *], one within home-based care [ 109 *] and one had been conducted within both contexts [ 103 *]. Different experimental designs ( n  = 8) were used to evaluate nursing interventions [ 101 *,  102 *,  104 *,  105 *,  106 *,  107 *,  108 *,  109 *], while two studies used qualitative methods to assess intervention development [ 100 *,  103 *].

Nursing interventions targeting fundamental needs or continuity of care (Q3) were first and foremost described as focusing on physical care needs, such as preventing falls and pressure ulcers and increased nutritional intake [ 103 *], nutrition and hydration [ 101 *,  102 *,  105 *], mobility [ 104 *], individual tailored activity [ 109 *], mobility, continence care and hydration [ 106 *], mobility and continence care [ 107 *], foot care [ 108 *] and person-centred models of care targeting fundamental needs [ 100 *]. One paper [ 100 *] described a more comprehensive approach, including physical, psychosocial and relational needs using a human-rights perspective [ 100 *]. The findings indicated that interventions focusing on fundamental nursing were largely feasible in practice and had favourable [ 102 *,  106 *,  109 *] or moderate results [ 101 *,  103 *,  104 *,  105 *,  107 *,  108 *]. However, the long-term effects of interventions were difficult to detect because a majority of the 10 included papers assessed to answer Q3 described either that any positive gain from the intervention dropped back to baseline after the evaluation period [ 101 *,  104 *] or the effects of the intervention were impaired because of barriers on policy and system level [ 102 *,  103 *,  106 *,  107 *].

None of the included papers, published after the first release of the Medical Research Councils Frameworks for Interventions for Complex interventions [ 110 ], used frameworks or guidelines for intervention development [ 111 ] or frameworks for developing and evaluating complex interventions [ 112 ]. We were not able to identify any fundamental nursing interventions focusing on relational and psychosocial care needs alone where a reasonable primary or secondary outcome could have been continuity of care. Neither did we identify any fundamental nursing interventions targeting older people’s continuity of care.

Overview model based on the PAGER framework displaying main results

Critical appraisal

Following the guidelines of CASP [ 63 ], MMAT [ 64 ] and Weingarten et al. [ 65 ], all papers were screened for methodological and ethical standards (Table  3 ). For papers assessed with CASP [ 68 *,  69 *,  70 *,  71 *,  72 *,  73 *,  74 *,  75 *,  76 *,  77 *,  78 *,  79 *,  80 *,  81 *,  91 *,  92 *,  93 *,  97 *,  99 *,  100 *,  103 *], the results indicated that the overall quality is acceptable. However, only 23.8% [ 68 *,  69 *,  78 *,  80 *,  100 *] clearly declared the relationship between researcher and participant, and only 28.5% clearly declared ethical considerations [ 76 *,  78 *,  80 *,  91 *,  97 *,  100 *]. For papers assessed with MMAT [ 82 *,  83 *,  84 *,  85 *,  86 *,  87 *,  88 *,  89 *,  90 *,  94 *,  95 *,  96 *,  98 *,  101 *,  102 *,  104 *,  105 *,  106 *,  107 *,  108 *,  109 *], the quality was overall acceptable; however, for quantitative descriptive studies [ 82 *,  83 *,  84 *,  85 *,  86 *,  87 *,  88 *,  94 *,  95 *,  96 *], half of the papers did not clearly state if the risk of nonresponse bias was low [ 83 *,  84 *,  85 *,  86 *,  95 *]. Finally, in relation to ethical assessment of all papers ( N  = 42), the results ranged from poor (0 of 5) to excellent reporting (5 of 5) (M = 3.04, Mdn = 3, mode = 4). A less reported topic was the declaration of adequate data protection because only 7.1% clearly provided a description of how research data were handled, stored, and protected [ 68 *,  91 *,  94 *].

This scoping review aimed to investigate and descriptively summarise previous research about fundamental nursing, its focus (what care needs are described, how is it described and by whom is it described), continuity of care (is it described in relation to fundamental nursing) and possible nursing interventions or activities targeting older people’s fundamentals of care needs in home- or facility-based care. The main results (Fig.  2 ) suggested that fundamental nursing primarily focused on physical needs and less attention was described towards relational- and psychosocial needs. Nursing interventions targeting all aspects of fundamental nursing and/or continuity of care was to a little degree reflected in the included data material. The results are further discussed based on the PAGER framework in Fig.  2 [ 113 ].

The pattern of the included papers suggested that the scientific literature describing fundamental nursing (Q1), the experience and descriptions of fundamental nursing (Q2), interventions or activities targeting fundamental nursing and continuity of care (Q3) were in most cases focusing on individual physical needs. In many papers, fundamental nursing was described to point towards fragmented and suboptimal fundamental nursing in home- and facility-based care, in line with previous literature reviews [ 10 , 114 , 115 , 116 ] and primary research studies [ 117 , 118 ]. The pattern of fragmented care could also be put in relation to one of the recurring descriptions from the analysis, that is, the lack of both sufficient and adequately trained nursing personnel and relationship to less-than-optimal fundamental nursing within home- and facility-based care [ 68 *,  69 *,  71 *,  72 *,  73 *,  75 *,  79 *,  80 *,  83 *,  89 *,  90 *,  93 *,  94 *,  97 *,  98 *,  107 *]. Previous research has pointed towards strong evidence supporting the correlation between nurse staffing, competence and patient mortality in specialised healthcare contexts [ 119 , 120 ] and the relationship between missed nursing care, adverse events and patient safety [ 31 ]. Within facility-based care, White et al. [ 121 ] found that RNs portrayed high levels of nurse burnout and job dissatisfaction. Research has pointed towards a relation between lack of access to resources and missed nursing care, which resulted in negative physical outcomes, that is, pressure ulcers, unnecessary use of antipsychotic medication and unplanned hospital admissions, as well as psychosocial and relational outcomes, that is, comforting and talking with older people and involving them as well as their relatives [ 122 ]. Results indicated that fundamental nursing, mostly related to physical care, largely overlooked psychosocial and relational aspects, and lacked comprehensive models of care focusing fundamental nursing and continuity of care.

The literature in this scoping review can be placed within the general discourse of nursing. Using Henderson’s nursing theory [ 1 ], both as a historical reference and theoretical perspective, the results suggest that the included papers remain primarily focused on physical needs because we could find few advancements in other aspects of fundamental nursing, such as the involvement of older people and their relatives and engagement in activity, which Henderson also saw as principles of fundamental nursing [ 1 ]. Hence, the results indicate slow advancement in theoretical, empirical, and interventional development focusing on fundamental nursing and continuity of care. As a result, nurses have few evidence-based models of care targeting fundamental nursing and continuity of care to implement within home- and facility-based care contexts. The modest state of research on fundamental nursing has been discussed elsewhere [ 10 , 116 ].

Later theoretical developments on nursing theory [ 123 ] have adopted a more comprehensive approach that could be beneficial because the results demonstrated that older persons have complex and comprehensive fundamental nursing care needs. Only a few papers have taken a more comprehensive approach to nursing interventions [ 100 *,  103 *,  104 *,  107 *]. However, the identified interventions can be viewed as narrow when compared with fundamental nursing, which ideally should target relational, psychosocial and physical needs [ 5 ]. The lack of advancement generates several key uncertainties and knowledge gaps concerning nursing interventions targeting fundamental needs and continuity of care in the literature.

A number of key uncertainties and knowledge gaps were identified. Most central is that the relationship between fundamental nursing and continuity of care is poorly described in the literature. Hence, any outcomes of continuous fundamental nursing targeting physical, relational and psychosocial needs are less understood. Second, as the results suggest that descriptions of fundamental nursing as both fragmented and complex is not uncommon it is reasonable to conclude that both the continuity- and quality of care might be infringed among older people in the home- and facility-based care context. Lacking teamwork, an optimal communication, and coordination of care [ 68 *,  72 *,  73 *,  79 *,  85 *,  92 *,  97 *] together with the already earlier mentioned description of understaffed, underequipped, and under-resourced home- and facility-based care contexts further supports such conclusions. However, less is known because the research focusing on fundamental nursing pinpoints a lack of conducted research targeting home- and facility-based care contexts [ 124 ]. The scarcity of nursing research focusing on continuous and comprehensive fundamental nursing gives the incentive to explore both home- and facility-based contexts and older persons’ fundamental nursing needs and their relatives’ experiences of fundamental nursing or lack thereof. The experiences of the latter were to a little degree reflected in the studies included in this scoping review because relatives represented only 4.25% of the total population, despite experiencing a tremendous burden and responsibility of informal care among older people [ 125 ].

Evidence for practice

Fundamental nursing should be grounded on evidence-based interventions and models of care, based on the involvement of the older person and their relatives in establishing a coherent and interconnected fundamental nursing and consistent with the older person’s needs and preferences over time [ 50 ]. Such care is more likely to promote safe, timely, effective, efficient, equitable and person-centred [ 126 ] fundamental nursing with the quality older persons should expect from home- and facility-based care [ 22 ] in a dignifying manner [ 37 , 38 ]. One possible way to increase the quality of fundamental nursing in home- and facility-based care is to employ and train highly skilled nursing staff. However, as the Committee on the Quality of Care in Nursing Homes stated, ‘low staff salaries and benefits combined with inadequate training has made the nursing home a highly undesirable place of employment’ [ 22 ] (p. 3); as a result, the much needed nursing workforce is looking elsewhere for employment [ 127 , 128 , 129 ]. Hence, alleviation of complex challenges is not only within the remit and competence of nursing staff; the results also point towards shortcomings on policy and system levels.

Research recommendations

Little research has been done on models of care, guidelines and frameworks that could support nurses in promoting fundamental nursing (Q3) in relation to the constituent parts of continuity of care, that is, fundamental nursing, which is experienced as coherent, interconnected over time and consistent with older peoples’ needs and preferences [ 50 ]. Although earlier research has targeted nurse-led interventions [ 130 ] and continuity of care [ 26 , 131 , 132 , 133 ], we could not detect interventions focusing on continuous fundamental nursing addressing older people in home- and facility-based care. Thus, our results have implications in relation to research. First, because nurses have few options of interventions focusing on fundamental nursing and continuity of care, the results underscore the need for intervention development aiming to support nurses in promoting a comprehensive approach to fundamental nursing, ensuring that the individual’s needs are regularly assessed and evaluated to ensure an optimal and continuous mode of fundamental nursing. Second, because there is a scarcity of research targeting fundamental nursing beyond older peoples’ single obvious physical needs e.g. nutrition, mobility and hygiene. Whereas other vital parts of fundamental nursing such as relational- and psychosocial needs are less well researched. On the other our findings implies that RNs perspectives of fundamental nursing is scant. This is noteworthy as non-registered assistants, although of vital importance in care, should be conceived as; “the operational arm of registered nurses (RNs) carrying out nursing behaviour under supervision and leadership from RNs” [ 2 ] (p. 149). Thus, there is a need to further explore current nursing practices to examine in more detail fundamental nursing and continuity of home- and facility-based care.

Methodological strengths and limitations

This scoping review has some strengths, such as the development of a wide search strategy that accommodates the PICoS of this review. The search strategy was developed with sensitivity to detect interchangeable use of vocabulary concerning home- and facility-based care, nursing staff, continuity of care, interventions, and fundamental nursing. To ensure that we had developed an optimised search strategy, we piloted and revised the search strategies, which were accompanied by meetings within the research team and consulting research librarians. However, valuable papers might not have been detected by our search strategy. A limitation and departure from the original methodology [ 40 ] on scoping reviews is the discarding of grey literature. The inclusion of grey literature (and other languages) could potentially expand our results, identifying practical guidelines and pathways in relation to fundamental nursing among older people in home- and facility-based care contexts and providing a deeper contextual understanding. However, this was not within the aim of the present study. Our choice to not exclude included papers, based on their quality assessment can be viewed as both a caution for the interpretation of our findings but also as a strength as even papers with limited quality can provide a valid rationale as a guidance as to where more research is required or to specific methodological recommendations for future research (c.f. [ 61 ]).

A central component of the present scoping review is its alignment with the Medical Research Council’s (MRC) framework for developing complex interventions [ 112 ]. This scoping review acts as the initial stage based on the MRC framework, which emphasises the development or identification of interventions, characteristics, and target population, as well as taking into consideration core elements (i.e., considering context, identifying uncertainties and stakeholder viewpoints) [ 112 ]. As such, guiding future research by informing appropriate research questions and perspectives [ 112 ]. A scoping review supports intervention development by identifying what is already known and pinpointing evidence gaps [ 67 ]. This feature can strengthen quality [ 112 ], inform planning of future research, prevent research waste [ 134 ], and ensure value through justifiable research priorities [ 135 ].

The present study has provided a summation extracted from a large body of scientific literature based on 42 included papers. The results suggested a fragmented and compartmentalised body of scientific literature as fundamental nursing was mainly described in relation to physical care needs, dominantly consisting of nutrition, mobility, hydration, oral health, and personal care needs essentially conducted within facility-based care contexts. Interventions and activities focusing on fundamental nursing primarily focused on one fundamental need at a time, mainly within the physical domain. Embedded strategies within nursing interventions were, to a little degree, targeting relational- or psychosocial needs where continuity of care could act as a possible outcome. This was reflected by older people as they described less attention to relational and psychosocial needs as opposed to physical care needs. Stakeholders’ viewpoints suggested that contextual factors, staffing, resources, and competence were the driving factors influencing the quality of fundamental nursing. Further research is needed to develop interventions, departing from the MRC framework [ 112 ] focusing on comprehensive and continuous fundamental nursing because the older population is increasing and the demand for fundamental nursing in home- and facility-based care contexts will continue to rise in the coming years.

Availability of data and materials

The datasets supporting the conclusions of this article are available at request.

References marked with asterisk (*) are included papers.

Abbreviations

Critical appraisal tool

Medical subject heading

Mixed methods appraisal tool

National Institutes of Health

Patterns, advances, gaps, evidence for practice and research recommendations

Population, phenomena of interest, comparison, outcome and study setting

Preferred reporting items for systematic review and meta-analysis

• Registered nurse

World Health Organisation

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Acknowledgements

A great thanks goes to information specialists Anneli Ekberg-Andersson and Linda Borg at Karlstad University (KAU) for their support in the development of the search strategy and the retrieval of articles. Furthermore, we wish to thank Kari Larsen Mariussen and Mia Alexandra Ølnes at Lovisenberg Diaconal University College, Norway, for retrieving articles.

Open access funding provided by Karlstad University. None declared.

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Nordaunet, O.M., Gjevjon, E.R., Olsson, C. et al. What about the fundamentals of nursing—its interventions and its continuity among older people in need of home- or facility-based care: a scoping review. BMC Nurs 23 , 59 (2024). https://doi.org/10.1186/s12912-023-01675-1

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Owner Incentives and Performance in Healthcare: Private Equity Investment in Nursing Homes

Amid an aging population and a growing role for private equity (PE) in elder care, this paper studies how PE ownership affects U.S. nursing homes using patient-level Medicare data. We show that PE ownership leads to lower-risk patients and increases mortality. After instrumenting for the patient-nursing home match, we recover a local average treatment effect on mortality of 11%. Declines in measures of patient well-being, nurse staffing, and compliance with care standards help to explain the mortality effect. Overall, we conclude that PE has nuanced effects, with adverse outcomes for a subset of patients.

We are grateful to Abby Alpert, Pierre Azoulay, Zack Cooper, Liran Einav, Paul Eliason, Arpit Gupta, Jarrad Harford, Steve Kaplan, Holger Mueller, Aviv Nevo, Adam Sacarny, Albert Sheen, Arthur Robin Williams, numerous seminar participants, and two anonymous referees for their comments and suggestions. Jun Wong, Mei-Lynn Hua, and Sarah Schutz provided excellent research assistance. A previous version of this paper was titled “Does Private Equity Investment in Healthcare Benefit Patients: Evidence from Nursing Homes." Funding from the Wharton Mack Institute and the Laura and John Arnold foundation (Gupta, Yannelis), the Kauffman Foundation (Howell), and the Fama Miller Center at the University of Chicago (Yannelis) is greatly appreciated. We gratefully acknowledge funding through National Institute of Aging pilot grant P01AG005842-31. All remaining errors are our own. The views expressed herein are those of the authors and do not necessarily reflect the views of the National Bureau of Economic Research.

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• How Patients Fare When Private Equity Funds Acquire Nursing Homes Author(s): Atul Gupta Sabrina T. Howell Constantine Yannelis Abhinav Gupta Purchases of nursing homes by private equity firms are associated with higher patient mortality rates, fewer caregivers, higher...

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Atul Gupta & Sabrina T Howell & Constantine Yannelis & Abhinav Gupta & Gregor Matvos, 2024. " Owner Incentives and Performance in Healthcare: Private Equity Investment in Nursing Homes, " The Review of Financial Studies, vol 37(4), pages 1029-1077.

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Choosing between staying at home or moving: A systematic review of factors influencing housing decisions among frail older adults

Noémie roy.

1 Interdisciplinary Research Group on Suburbs (GIRBa), Laval University, Quebec, Qc, Canada

2 School of Architecture, Laval University, Quebec, Qc, Canada

3 Laval University Primary Care Research Centre (CERSSPL-UL), Quebec, Qc, Canada

Roxanne Dubé

Carole després, adriana freitas, france légaré.

4 Department of Family Medicine and Emergency Medicine, Laval University, Quebec, Qc, Canada

Associated Data

All relevant data are within the paper and its Supporting Information files.

Most older adults wish to stay at home during their late life years, but physical disabilities and cognitive impairment may force them to face a housing decision. However, they lack relevant information to make informed value-based housing decisions. Consequently, we sought to identify the sets of factors influencing the housing decision-making of older adults.

We performed a systematic literature search for studies evaluating any factors influencing the housing decisions among older adults over 65 years old without cognitive disabilities. Primary research from any study design reported after 1990 in a peer-reviewed journal, a book chapter or an evaluated doctoral thesis and written in English, French or Spanish were eligible. We extracted the main study characteristics, the participant characteristics and any factors reported as associated with the housing decision. We conducted a qualitative thematic analysis from the perspective of the meaning and experience of home.

The search resulted in 660 titles (after duplicate removal) from which 86 studies were kept for analysis. One study out of five reported exclusively on frail older adults (n = 17) and two on adults over 75 years old. Overall, a total of 88 factors were identified, of which 71 seem to have an influence on the housing decision-making of older adults, although the influence of 19 of them remains uncertain due to discrepancies between research methodologies. No conclusion was made regarding 12 additional factors due to lack of evidence.

A wealth of factors were found to influence housing decisions among older adults. However, very few of them have been studied extensively. Our results highlight the importance of interdisciplinary teamwork to study the influence of a broader range of factors as a whole. These results will help older adults make the best possible housing decision based on their unique situation and values.

Introduction

The proportion of older adults around the world is increasing dramatically. By 2050, the number of adults aged 60 years and over will nearly double and countries in Europe and North America will see the proportion of older adults increase by 30% [ 1 ]. In Canada, estimates from 2015 show that for the first time, there were more older adults in the country than children under 15 [ 2 ] and the number of adults aged 65 and older will represent more than 25% of the population by 2036, with 32% of them being over 80 years old [ 3 ]. As their age increases, older adults inevitably experience a progressive loss of their capacities and autonomy. Indeed, 57% of Canadians aged 85 and older report functional limitations, compared to 12% of adults between the age of 65 and 74 [ 4 ]. In addition, 30% of Canadians aged 75 years and over are receiving home care services [ 5 ]. Functional limitations among older adults will increase the pressure on healthcare services, social services and on the provision of housing as aging Canadians consider whether to stay at home or relocate.

Choosing between staying at home and moving to a more supportive environment is a complex decision for older adults facing autonomy loss. Most of them would prefer to stay in their home [ 6 , 7 ]. Indeed, 90% of Canadians aged 65 years old and over still live in their homes. Two-thirds of them live in a private house [ 8 ] and over 70% have not moved in the past five years [ 9 ]. The residential mobility rate of older Canadians even decreases with age: adults of 85 years or older living in private dwellings are 30% less likely to have moved than adults aged 65–69 years old [ 10 ]. However, half of adults aged 85 years or older living at home rely on caregivers or on home care services to help them perform their daily activities [ 5 ]. When this help becomes insufficient, frail older adults are likely to consider their housing options: either stay in their home and adapt it to their needs, or move to an already adapted dwelling, with or without additional care.

Over the years, studies investigating housing decisions have used several conceptual models. Three main theory families on living arrangements in old age have received more extensive empirical testing than the others [ 11 ]: migration theory [ 12 – 14 ], environmental press theories [ 15 ] and health behaviors theories [ 16 ]. However, none of these theories considered the residential experiences of older adults as well as the social and emotional meanings attached to these experiences. The role these factors play in older adults’ decision-making about housing options is therefore still largely unspecified [ 11 ]. A framework proposed by Després and Lord [ 17 ] encompasses these lesser explored factors, looking at older adults’ housing decisions through a new lens, the meta-concept of home . They suggest six main dimensions that best account for the meanings and experiences of home ( Table 1 ).

To date, many factors have been taken into account in research on older adults’ housing decisions, including health and social factors. However, not all potential factors have been identified, especially those related to the built environment and what it represents for older adults. Thus, our objectives were: 1) to identify all the factors that influence decision-making about housing options among older adults with loss of autonomy; 2) to classify them according to a new adapted framework that combines health, safety and functional autonomy factors with those related to the meaning and experience of home; and 3) to observe which factors had an observed effect in the research and which need further investigation.

Study design

We conducted a systematic review to evaluate: What are the factors that influence older adults without cognitive disabilities when faced with a housing decision? Our specific questions were: 1) besides factors related to health and functional autonomy identified as influencing the housing decision of older adults, what is the role of factors related to their experience of home and the meanings they attached to it?; 2) in what other countries are studies of the factors influencing the housing decisions of older adults taking place, and in what research disciplines?

We refer to “staying at home” as the older adult staying in their current dwelling where they feel at home and to which they attached social and emotional meanings. Staying at home can be achieved alone or with a caregiver, it can involve home care services, home modifications, or neither of these.

Information sources

The search strategy was developed by the authors in consultation with an information specialist. Searches were conducted from database inception until the end of February 2015. Our literature search used the keywords “older adults”, “frail”, “housing decision”, “housing relocation” and “factors”. As we wanted to explore literature from diverse disciplines, we searched for primary studies in AgeLine, ERIC, PubMed, Taylor & Francis and Web of Science.

Only the database searches in AgeLine and Taylor & Francis were limited. In AgeLine, we included studies on older adults without dementia (“NOT dementia”). In Taylor & Francis, we included studies on older adults without dementia or mental disability (“NOT ‘mental disability’”, “NOT dementia”) and we excluded studies focusing on politics or drugs (“NOT politics”, “NOT drugs”). These restrictions were to clarify the search and to limit the vast spectrum obtained with the main strategy ( S1 Appendix . Search strategy example). In addition to our database search, we also invited team members (e.g. experts in health sciences and the built environment) to inform us of any other potentially relevant study.

Eligibility criteria

All or some participants in the included studies had to be aged over 65 years and we excluded those with cognitive disabilities. If the age range of participants was not specified, we included studies in which participants’ mean age was over 65 years or participants who were recruited in housing designed for older adults, with or without additional care. We included studies of any kind of intervention aimed at reporting or measuring factors influencing the housing decision. We included studies both with and without comparison groups. Study outcomes could be any objective or subjective measures of factors influencing housing decisions as reported by experts or as self-reported by participants. There was no restriction on study design. We included all articles in peer-reviewed journals, book chapters in books with editorial committees or doctoral theses with thesis committees. We excluded studies published before 1990 because the important developments in environmental gerontology and around the meta-concept of home occurred after that date [ 18 ].

Study selection

Two of the authors (NR and RD) combined search results and independently checked for duplicates. A pre-test screening using a Kappa k calculation was performed on 60 randomly selected titles and abstracts to check concordance between the two authors. The coefficient of Kappa k was 0.8691, corresponding to “excellent” agreement between the authors. This pre-test allowed the authors to discuss the abstracts they disagreed about and to adjust their screening accordingly. Then they individually evaluated the remaining titles and abstracts and discussed in person all studies for which inclusion and exclusion criteria were not clear from the title or abstract. Any remaining disagreements were resolved through discussion with a third author (CD). Full-text copies of all studies that might be relevant and had not been excluded through screening were retrieved. All full-texts were reviewed by the authors (NR and RD) and again discussed to check agreement that they met the pre-established inclusion and exclusion criteria.

Data collection process

Two authors (NR and RD) extracted data independently from eligible studies using a data extraction sheet. General characteristics (e.g. publication year, country of study, authors’ discipline of study retrieved from their curriculum vitae), study characteristics (e.g. study objectives, study design, data collection, nature of reported issues), participants characteristics (minimum age included, mean age, sample size, autonomy level, type of dwelling and neighborhood, tenure status) were extracted, as well as factors reported as associated with the decision to relocate or not, whether the factors were identified as statistically significant or not in quantitative study designs, or narratively reported in qualitative study designs. The extraction grid was inspired by the framework proposed by Després and Lord [ 17 ] to which was added a fifth dimension to include the socioeconomic and health-related factors of influence on the experience and meaning of home. After discussion with team members, the space-time dimension and the temporal dimension were also combined into one time and space-time related dimension due to their similarities, the psychological dimension was extended to include psychosocial factors, and the material dimension became the built and natural environment dimension . The authors subsequently classified all factors influencing housing decisions, as extracted from the studies, into the resulting six dimensions of the new framework. Each author (NR and RD) reviewed the other’s extraction and resolved doubts or disagreements. Any remaining disagreements were adjudicated by CD.

Quality appraisal

The authors (NR and RD) appraised the quality of studies using the Mixed Methods Appraisal Tool (MMAT) [ 19 ]. The MMAT is a validated checklist for appraising the quality of quantitative, qualitative, and mixed methods-studies included in systematic reviews [ 20 ]. For quantitative randomized controlled studies, we assessed randomization, allocation concealment or blinding, completeness of outcome data, and withdrawal/drop-out rates. For quantitative non-randomized studies, we assessed selection bias, appropriateness of measurements, comparability of groups, completeness of outcome data and response or follow-up rates. For quantitative descriptive studies, we assessed sampling strategies, sample representativeness, appropriateness of measurements and response rates. In qualitative studies, we assessed the relevance of the data sources, the relevance of the analysis process, context consideration and consideration of researcher influence. In mixed-methods studies, we assessed the quality of both qualitative and quantitative components.

After discussing their appraisals, the two authors (NR and RD) resolved any remaining doubts or disagreements through discussion with a third author (CD). Missing information was sought either by searching the website of the research project (if available) or contacting the authors.

Synthesis of results

Given the high level of methodological heterogeneity across studies, the authors conducted a qualitative synthesis of the studies. They also compared the results according to their study design (qualitative, quantitative and mixed method). The factors were classified by the level of agreement between studies that found an effect on the housing decision. Factors studied by fewer than three quantitative studies or fewer than five studies of any design method were treated as exploratory factors. The level of agreement between studies was therefore not calculated.

Of 761 potential studies investigating the factors influencing housing decisions that were retained for this review, 750 were identified through the database search and 11 through team members. After removing duplicates, 660 studies were reviewed for eligibility. Eighty-six independent studies, described in 91 publications, met all eligibility criteria and were kept for analysis ( Fig 1 ). As three research studies were described in more than one publication [ 21 – 28 ], all publications that reported on them are cited together when referring to these studies.

Study characteristics

Table 2 presents an overview of the extracted studies’ characteristics. All of them were published in English except for two, which were in French [ 27 , 29 ]. A total of 74 studies were published in peer-reviewed journals [ 10 , 21 – 28 , 30 – 99 ]; nine more were retrieved from doctoral theses [ 100 – 108 ] and three others from book chapters reviewed by editorial committees [ 29 , 109 , 110 ]. Over half were published after 2005 (n = 50) [ 10 , 21 – 23 , 25 – 39 , 44 , 46 – 48 , 51 , 53 , 55 – 58 , 60 – 62 , 64 – 66 , 68 , 69 , 71 , 74 , 77 , 78 , 80 , 81 , 84 – 86 , 88 , 90 – 92 , 96 , 98 , 99 , 106 ]. Over three quarters of independent studies were conducted in the USA (n = 48) [ 21 , 24 , 31 , 33 , 36 – 38 , 40 – 43 , 47 , 51 , 54 , 55 , 57 , 58 , 62 , 63 , 65 – 67 , 70 , 71 , 73 , 75 , 77 , 80 , 81 , 83 , 84 , 87 – 90 , 93 – 95 , 97 , 100 – 105 , 107 – 110 ], Australia (n = 10) [ 34 , 35 , 39 , 44 , 49 , 52 , 72 , 86 , 91 , 96 ] and Canada (n = 9) [ 10 , 26 , 27 , 46 , 59 , 68 , 78 , 85 , 98 , 106 ]. Four studies were conducted across more than one country: two in Europe [ 22 , 23 , 25 , 28 , 30 ], one in Asia [ 108 ] and one in the USA and Germany [ 82 ].

*Doctoral thesis reviewed by peer review committee.

§ Book chapter published in a book peer-reviewed by editorial committees.

† Papers describing the results of the Enable-Age Project.

†† Papers describing the results of the Pathway to Life project.

‡ Papers describing the longitudinal study in Lord’s doctoral thesis.

Two hundred and ten (210) distinct authors signed or co-signed the 86 studies, among whom 43% (n = 90) were in social sciences [mostly psychology (n = 29), sociology (n = 19) and social work (n = 15)]; 29% (n = 60) in health sciences [two thirds in occupational therapy (n = 20), nursing (n = 10) and medicine (n = 9)]; 13% (n = 27) in economy and administration [dominated by economics, n = 21]; 5% (n = 11) in planning, architecture or design [about half in architecture (n = 6)], and 10% (n = 22) in other research domains [dominated by engineering (n = 6) and geography (n = 5)]. Most common disciplinary affiliations were thus with psychology, occupational therapy and economics. Two-thirds of the studies (n = 57) were either signed by one author (n = 30) [ 29 , 40 , 46 , 49 , 59 , 62 – 65 , 68 – 70 , 72 , 74 , 76 , 80 , 93 – 95 , 97 , 100 – 108 , 110 ], by co-authors in the same discipline (n = 18) [ 10 , 41 – 45 , 52 , 54 , 55 , 67 , 73 , 75 , 83 – 85 , 90 , 96 , 99 ], or by co-authors in the same research domains (n = 9) [ 33 , 47 , 48 , 51 , 57 , 58 , 77 , 87 , 98 ]. Among the remaining 29 studies (34%), 21 were co-signed by authors from two different research domains [ 21 – 25 , 28 , 30 , 34 , 36 , 39 , 50 , 53 , 56 , 61 , 71 , 78 , 79 , 81 , 82 , 86 , 88 , 89 , 91 , 92 , 109 ] (nine from social or health sciences) and eight by authors from three or more research domains [ 26 , 27 , 31 , 32 , 35 , 37 , 38 , 60 , 66 ].

Nine studies involved researchers in planning, architecture or design [ 26 , 27 , 35 , 66 , 77 , 100 – 102 , 104 , 109 ], of which four were in collaboration with at least one other research domains [ 26 , 27 , 35 , 66 , 109 ].

A total of 60% of the studies were quantitative [ 10 , 21 , 24 , 29 , 30 , 32 , 36 – 38 , 40 – 45 , 50 , 52 , 53 , 55 , 56 , 59 , 60 , 63 , 64 , 66 – 69 , 73 , 75 – 78 , 80 , 82 – 90 , 93 – 95 , 97 – 99 , 104 , 106 , 108 , 110 ], mostly descriptive. On the other hand, 30% of the studies were qualitative [ 31 , 33 , 34 , 39 , 46 , 48 , 49 , 51 , 57 , 58 , 62 , 65 , 70 – 72 , 74 , 79 , 81 , 91 , 92 , 96 , 102 , 103 , 105 , 107 , 109 ]. Eight studies used mixed methods [ 22 , 23 , 25 – 28 , 35 , 47 , 54 , 61 , 100 , 101 ].

More than half of the studies (n = 47) looked at the housing decisions of older adults only after they had made a choice [ 10 , 26 , 27 , 31 – 35 , 37 , 39 , 41 – 49 , 56 , 58 , 59 , 62 , 63 , 65 – 67 , 70 , 71 , 73 – 75 , 78 , 80 , 82 , 85 – 87 , 91 , 92 , 96 , 99 , 102 – 104 , 107 – 109 ]. Four more examined only during the decision process [ 51 , 60 , 64 , 69 ]. Three out of ten studies considered different steps in the housing decision process, whether before, during or after the decision was made [ 21 – 25 , 28 – 30 , 36 , 40 , 50 , 53 – 55 , 57 , 61 , 77 , 79 , 81 , 83 , 84 , 89 , 93 – 95 , 97 , 100 , 105 , 106 , 110 ]. Twelve studies addressed the housing decision as a purely hypothetical choice, and did not record whether or when the older adults had made an actual decision [ 38 , 52 , 60 , 68 , 72 , 76 , 88 , 90 , 93 , 98 , 101 , 105 ]. Among the studies of non-hypothetical housing decisions, 38 looked at them from a post-relocation perspective [ 31 – 33 , 41 – 44 , 46 – 51 , 56 , 58 , 59 , 62 , 63 , 65 , 70 , 71 , 73 , 74 , 79 , 81 – 83 , 85 , 89 , 92 , 96 , 97 , 102 – 104 , 106 – 108 ], with 6 of them not specifying the type of destination (e.g. private dwelling, cooperative, assisted living, nursing home) [ 41 – 43 , 56 , 73 , 89 ]. In an additional 31 studies, the samples of older adults had either chosen to relocate or stay at home [ 10 , 21 – 30 , 34 – 37 , 39 , 40 , 45 , 53 – 55 , 57 , 61 , 64 , 67 , 69 , 75 , 77 , 78 , 84 , 86 , 87 , 94 , 95 , 99 , 110 ]. Five studies looked at the housing decision only among those who had decided to stay at home [ 66 , 80 , 91 , 100 , 109 ].

In about two-thirds of the studies (n = 57), most factors influencing the housing decision were reported by study participants or by researchers through interviews, census questionnaires or observational grids [ 10 , 30 , 31 , 34 – 36 , 38 , 39 , 42 – 44 , 46 , 48 – 58 , 60 , 62 , 63 , 65 , 66 , 69 – 72 , 74 , 78 – 81 , 86 – 96 , 98 – 100 , 102 , 103 , 105 , 107 , 109 , 110 ]. Sixteen other studies referred to factors being objectively measured [ 29 , 37 , 40 , 41 , 45 , 59 , 64 , 67 , 68 , 73 , 75 – 77 , 82 , 85 , 97 ] and 13 combined both self-reported and objectively measured data [ 21 – 28 , 32 , 33 , 47 , 61 , 83 , 84 , 101 , 104 , 106 , 108 ]. Overall, nine studies specified the use of at least one validated measurement instrument or scale for data collection [ 21 – 28 , 30 , 44 , 50 , 61 , 86 , 101 ]. These scales assessed either the physical or mental health of older adults and their caregivers, as well as aspects of their dwellings.

Sample sizes ranged from 91 to 502 075 participants in quantitative studies, from eight to 120 in qualitative studies, and from 10 to 8022 in mixed-methods studies. In two studies using data from national surveys, sample sizes were not recorded [ 43 , 86 ]. Eight studies specified additional samples of family members, friends, health professionals, needs assessors or service coordinators [ 31 , 38 , 39 , 57 , 60 , 61 , 65 , 107 ].

The characteristics of participants and their housing

In almost half of the studies (n = 41), the minimum age of participants was under 65 years old [ 21 , 24 , 26 , 27 , 30 , 32 , 34 , 35 , 41 , 42 , 44 , 45 , 53 , 54 , 56 , 59 , 67 – 70 , 72 – 74 , 77 , 78 , 80 – 82 , 84 – 86 , 89 , 90 , 92 – 95 , 101 , 104 – 106 , 109 , 110 ]; almost the same proportion (n = 38) excluded people under 65 years old [ 10 , 29 , 31 , 33 , 36 , 37 , 39 , 40 , 43 , 46 , 48 , 50 – 52 , 55 , 57 , 58 , 61 , 63 – 66 , 71 , 75 , 76 , 83 , 87 , 88 , 91 , 96 – 100 , 102 , 103 , 107 , 108 ] and two excluded people under 75 years old (n = 2) [ 22 , 23 , 25 , 28 , 62 ]. Four studies only specified their sample mean or median age which was over 65 years old [ 38 , 47 , 49 , 60 ]. In one case, the sample was composed exclusively of residents living in housing designed for older adults with or without additional care [ 79 ]. Among all studies, 10 targeted populations with a large age range with analyses per age group [ 26 , 27 , 29 , 35 , 41 , 44 , 53 , 56 , 69 , 80 , 86 ].

Less than 40% assessed the autonomy levels of participants (n = 34). They were either frail (n = 17) [ 22 , 23 , 25 , 28 , 29 , 31 , 32 , 39 , 48 , 49 , 54 , 55 , 61 , 62 , 66 , 70 , 88 , 91 , 107 , 109 ], in relatively good health (n = 6) [ 33 , 36 , 64 , 71 , 98 , 103 ], in very good health (n = 2) [ 21 , 24 , 96 ] or showed varying levels of health (n = 9) [ 26 , 27 , 35 , 38 , 60 , 80 , 83 , 90 , 100 , 108 ].

Almost three-quarters of the studies (n = 63) did not specify the residential sector type (urban, suburban or rural) in which participants lived [ 10 , 29 , 30 , 32 , 33 , 36 , 37 , 39 – 41 , 44 – 55 , 57 – 60 , 62 – 64 , 67 – 71 , 73 – 77 , 79 – 81 , 83 , 84 , 87 – 91 , 93 – 98 , 100 , 103 – 108 , 110 ]. Five studies reported on participants living in suburban areas [ 26 , 27 , 38 , 86 , 101 , 109 ], two in urban areas [ 22 , 23 , 25 , 28 , 61 ] and 16 included two or more residential environments [ 21 , 24 , 31 , 34 , 35 , 42 , 43 , 56 , 65 , 66 , 72 , 78 , 82 , 85 , 92 , 99 , 102 ]. Over half of the studies investigated people living in traditional housing (i.e. not specifically designed for older adults) at the beginning of the study (n = 49) [ 10 , 21 – 28 , 30 , 35 , 36 , 38 , 41 – 45 , 51 , 53 , 55 , 60 , 61 , 64 , 66 , 68 , 69 , 71 – 77 , 80 – 82 , 84 , 87 – 90 , 93 – 95 , 97 – 101 , 104 , 105 , 109 , 110 ]; 24 exclusively targeted housing designed for older adults, with or without additional care [ 31 – 33 , 37 , 39 , 46 – 50 , 58 , 62 , 63 , 65 , 70 , 83 , 85 , 91 , 92 , 96 , 102 , 103 , 106 , 107 ], 11 others targeted both [ 29 , 34 , 40 , 52 , 54 , 56 , 57 , 59 , 78 , 79 , 108 ] and two studies did not specify [ 67 , 86 ]. Almost one-third of studies (n = 27) did not record the specific type of housing participants were living in (detached house, condominium or apartment, assisted living, congregate housing, etc.) [ 35 , 41 – 44 , 53 , 55 , 60 , 67 – 69 , 72 , 76 , 80 – 82 , 84 , 86 , 88 – 90 , 93 – 95 , 97 , 98 , 110 ].

Over three-quarters of the studies specified the tenure status of their participants. In 10 studies, participants were all homeowners [ 26 , 27 , 35 , 38 , 45 , 64 , 73 , 77 , 80 , 101 , 109 ] and in 18 others, private renters [ 31 – 33 , 43 , 46 – 49 , 51 , 62 , 65 , 70 , 79 , 83 , 102 – 105 ]. Seven studies considered other residential arrangements such as subsidized housing or long-term care facilities [ 37 , 40 , 58 , 85 , 91 , 99 , 106 ]. The remaining studies included participants of any tenure status (n = 33) [ 10 , 21 – 25 , 28 – 30 , 34 , 36 , 39 , 42 , 50 , 53 , 54 , 56 , 57 , 59 , 69 , 71 , 74 , 78 , 87 – 90 , 92 – 96 , 98 , 100 , 107 , 108 , 110 ], of which 21 studies included renters and owners specifically [ 10 , 21 – 25 , 28 , 29 , 30 , 34 , 42 , 50 , 53 , 59 , 69 , 71 , 74 , 78 , 87 – 90 , 92 , 96 , 98 ]. However, only four of them compared the factors influencing housing decisions between those two tenure types [ 23 , 30 , 94 , 95 ]. Tenure status was not reported in 18 studies [ 41 , 44 , 52 , 55 , 60 , 61 , 63 , 66 – 68 , 72 , 75 , 76 , 81 , 82 , 84 , 86 , 97 ].

Seven studies reported on the average time older adults had lived in their current dwelling [ 26 , 27 , 52 , 65 , 67 , 71 , 83 , 107 ]. Three specified the main transportation mode used by participants in their daily life [ 21 , 24 , 26 , 27 , 72 ].

The quality of the studies

Following the quality appraisal of all studies, 59 scored as of high quality [ 10 , 29 – 32 , 34 , 36 , 37 , 39 – 41 , 43 , 46 – 48 , 51 , 53 – 60 , 62 – 66 , 68 , 70 , 73 – 78 , 80 , 81 , 83 – 86 , 88 , 89 , 91 , 93 – 97 , 99 , 100 , 102 , 103 , 105 , 107 , 108 , 110 ] and 24 of medium quality [ 33 , 35 , 38 , 42 , 44 , 45 , 49 , 50 , 52 , 61 , 67 , 69 , 71 , 72 , 79 , 82 , 87 , 90 , 92 , 98 , 101 , 104 , 106 , 109 ]. Two mixed-method studies had different quality rating for their quantitative versus qualitative parts [ 22 , 23 , 25 – 28 ], and two quantitative sub-studies within a single research project had different quality evaluations [ 21 , 24 ]. No low-quality studies were identified. All 86 retrieved studies were thus considered for analysis.

Factors influencing the housing decision

A total of 88 potential factors of influence on older adults’ housing decisions were extracted from the 86 studies. Of these 88 potential factors, 78% were individually addressed in less than one quarter of the studies and 42% in less than one out of ten. Our previous study [ 111 ] reported on a total of 55 influential factors linked to the meaning and experience of home. By adding a dimension to the initial model associated with the socioeconomic and health-related factors, as well as refining the extraction, this paper brings the total number of factors up to 88. The effect of each of these factors of influence on the housing decision was also assessed. Table 3 reports the number of studies reporting on each of the 88 factors found to influence the housing decision of older adults, push and pull factors combined. The reported effect of each factor is recorded globally but also according to the study design (quantitative, qualitative, mixed).

Number of independent studies addressing each factor are not mutually exclusive.

*n = number of independent studies.

! Factors for which a discrepancy was identified between studies with different methods.

Among all 88 potential factors of influence investigated, having a mortgage or reverse mortgage was found to have an effect on older adults’ housing decisions in 33% of the assessed studies, gender in 37% of them, education , employment and traffic and car facilities in about half of them. For 12 additional factors, evidence was insufficient to discuss any trend since they were addressed in fewer than three quantitative studies or fewer than five studies of any design method. The remaining 71 factors were found to have an overall effect on older adults’ housing decisions in at least 60% of the studies in which they were considered, although 19 of them show discrepancies between quantitative, qualitative and mixed methods study designs.

Of the 71 factors found to have an overall effect on the housing decision, 21 of them had an overall level of agreement among studies ranging from 90% to 100%. Thirty-two additional factors were found to influence older adults’ housing decisions, with levels of agreement of 75% to 89% between studies, and the remaining 18 factors identified as having an effect on the housing choice had degrees of agreement ranging from 60% to 74%.

The dimensions of the experience and meaning of home influencing the housing decision

The 88 factors were then classified within the six dimensions of the experience and meaning of home ( Fig 2 ). Several potential factors of influence associated with the socioeconomic- and health-related dimensions of home were considered simultaneously in most studies, while just a few of the factors associated with the other five dimensions were explored per study. Indeed, a total of 79 studies considered factors related to the socioeconomic- and health-related dimension [ 10 , 21 , 23 – 25 , 27 – 33 , 35 – 43 , 45 – 51 , 53 – 62 , 64 – 69 , 71 , 73 – 78 , 80 – 110 ], 71 to the built and natural environment dimension [ 10 , 21 – 24 , 26 – 39 , 41 – 44 , 46 , 48 – 54 , 56 – 61 , 64 – 67 , 69 – 72 , 74 – 82 , 84 – 86 , 89 – 93 , 95 – 102 , 104 – 107 , 109 ], 66 to the social dimension [ 21 , 22 , 24 – 26 , 28 – 35 , 38 – 41 , 44 , 46 – 49 , 51 , 53 – 55 , 57 – 63 , 65 – 71 , 73 – 78 , 80 – 85 , 87 – 89 , 91 – 93 , 96 , 99 – 108 ], 65 to the time and space-time related dimension [ 21 – 35 , 39 , 44 – 49 , 51 – 65 , 67 – 77 , 79 – 81 , 83 – 88 , 91 – 93 , 96 – 98 , 100 – 105 , 107 ], 63 to the psychological and psychosocial dimension [ 21 – 26 , 28 – 35 , 38 – 40 , 44 – 49 , 51 , 52 , 54 , 57 – 64 , 67 , 68 , 70 – 74 , 76 , 80 – 92 , 96 – 107 ], and 51 to the economic dimension [ 10 , 23 – 26 , 29 – 33 , 35 , 37 , 38 , 41 – 45 , 49 , 50 , 53 , 56 , 59 , 64 , 65 , 69 , 71 , 74 , 75 , 77 , 80 – 82 , 84 , 86 , 87 , 89 , 90 , 92 – 98 , 100 , 102 , 104 , 105 , 107 , 108 , 110 ]. Factors belonging to four of the six dimensions of the experience and meaning of home (if the economic and the socioeconomic/health dimensions are excluded) were seldom considered in quantitative studies, except for a few individual factors. Conversely, factors belonging to the economic and socioeconomic/health dimensions were mostly explored using quantitative designs. Qualitative and mixed-methods studies typically considered a more diverse range of potential factors of influence on housing decisions.

(A) Factors are classified by their overall reported effect (E) on the housing decision of older adults. The ones closer to the center have a greater effect. (B) Italics: Factors for which a discrepancy was identified between studies with different methods.

Discarding the 19 factors with discrepancies between study methods, 52 factors of influence identified remain as having an effect on the older adults’ housing decision in at least 60% of the studies assessing them. Those factors cover all six dimensions of the meaning and experience of home. Eleven were related to the built or natural environment of the dwelling, nine were of a psychological or psychosocial nature, nine to do with the economic dimension, nine were of a social nature, and nine to do with time- and space-time related dimensions of the experience of home. Five factors were related to socioeconomic and health-related dimension.

Interestingly, most of the factors showing an effect belonged to the dimensions of the meanings and experience of home that were not related to older adults’ socioeconomic profile or health status, while these were the dimensions most commonly considered by the studies under review. The effect of thirty-one factors remains unclear, either because the types of research design in which it was identified did not concluded of the same results (effect identified or no effect identified) or because it has not been sufficiently studied using any design. Surprisingly, mortgage and reverse mortgage , as well as gender seemed to be the only factors with little effect, according to our review, but this needs to be confirmed by further studies, given the large number of female older adults and the known difference between women and men such as their respective roles in caregiving [ 112 ].

This systematic literature review provides an overview of the factors influencing housing decisions among older adults experiencing loss of autonomy. It shows the multiplicity of considerations involved in older adults’ housing decisions and demonstrates the strength of our theoretical framework for organizing a diversity of interdisciplinary scientific evidence. Our results lead us to make several observations. First, our results are interesting in light of the Canadian experience where the housing decisions of adults experiencing loss of autonomy are described in the research as decisions about “location of care” [ 113 ]. Professional teams helping older adults make housing choices are mostly composed of health and social service professionals (occupational therapists, nurses, physicians, social workers), and their perspective is therefore one that focuses on where the person will receive care. Our results suggest that older adults address their housing desires and the care they need to remain independent as long as possible as one and the same question. The location-of-care perspective may have led to consideration of a reduced group of factors, focusing more on the socioeconomic and health profile of older adults and on their social supports than on what else they care about in a home. The broad reach of this literature review has brought to light a diversity of other factors, suggesting that the complexity of this decision and its multidimensional nature is still underestimated [ 114 ]. Interestingly, the same perspective question came up in our decision to use the term “staying at home” as opposed to “aging in place”. The literature is not clear on the distinction between the two, as they are usually used synonymously. However, we chose to use “staying at home” because in general it reflects the perspective and preferences of the older adult himself/herself to remain in its current dwelling, while “aging in place” is a term that reflects the professional, bureaucratic or policy perspectives on the efforts to keep older people out of institutions, which could involve a move to another independent housing or not (similar to the perspective difference between the terms “housing options” vs. “location of care”). This subject of terminology choices and how they impact research would benefit from further study.

Second, to extract and analyze factors influencing the housing decision, we used the Després and Lord (2005) theoretical framework based on the meta-concept of home, designed to analyze the experiences of dwelling and neighborhood as well as the social and emotional needs of older adults [ 17 ]. This gave our analysis a new perspective and complemented the frameworks more commonly used for this purpose [ 11 ]. The diversity of factors identified showed that none of these frameworks by itself was adequate for understanding the factors that influence housing decisions. We thus created a new framework, adding a “socioeconomic profile and health” category to the Després and Lord framework for factors such as health status and age. This modified framework will allow for a fuller appreciation of the multiple dimensions of the housing decision and provide a tool for building bridges between various research domains [ 114 ]. It will also guide the updating of existing decision guides intended for older adults [ 115 ] to include consideration of the meaning and experience of home.

Third, this literature review shows a lack of diversity in studies addressing factors influencing housing decisions in old age in terms of the academic disciplines involved. More than half of the reviewed studies were written by only one author or by authors in the same research domain, while only a third benefited from experts in at least two research domains, with health sciences and social sciences being the most common combination. Even though almost 25% of the significant factors of influence were associated with the built and natural environment, less than 8% of the researchers involved in all studies were trained as geographers, planners, architects or designers. Built environment experts need to be more involved in research addressing older adults’ housing needs to contribute their knowledge about these important factors in housing decisions and provide a more complete and accurate picture of what is involved. This also highlights the importance of training researchers in architecture and urban planning [ 116 ]. A more transdisciplinary perspective is clearly needed [ 117 – 119 ] to inform policy and have a real impact on the quality of life of the frail elderly. However, this type of research is still rather rare and hard to finance [ 120 ].

Fourth, studies using quantitative methods focused mostly on economic, socioeconomic and health-related factors. However, quantitative methods may have a limited capacity to grasp people’s feelings, emotions and values, as well as their daily routines and social networks. Qualitative methods are more likely to be used to assess the social, psychological/psychosocial and time/space-time dimensions, as these factors are more subjective and more complex to assess using quantitative methods. Indeed, most such factors are closely linked to the meaning of home, which is the subjective heart of the housing decision. However, the effects on housing decisions of both emotional attachment to one’s dwelling and the number of years lived in the present dwelling/neighborhood remains unclear according to the results of this review, as strong quantitative studies found no effect of these factors, while strong qualitative and mixed-method studies agreed they had an important effect. While most economic and socioeconomic/health-related factors are more easily assessed with quantitative methods, studies investigating factors in the other four dimensions (psychological/psychosocial, social, time and space-time -related, built and natural environment) could also greatly benefit from more quantitative and mixed-method approaches to complement their qualitative results.

Last but not least, the effects of specific population characteristics on the housing decision, as well as several other factors identified as influential, are understudied. Very old and frail older adults were surprisingly little studied, even though we know that these are the people who suffer most autonomy loss and are most at risk of moving into long-term care [ 4 ]. Indeed, only five studies focused on very old adults and 20 specifically on frail older adults. This could be due to the difficulty of investigating this population where dementia, cognitive disorders and severe autonomy losses could limit their participation compared to younger or less frail older adults. Moreover, it may be more difficult to distinguish the very frail from the overall population of older adults, as few studies have attempted to assess frailty using validated instrument or scales and no clear definition has yet emerged in the literature [ 121 ]. Another important understudied characteristic in association with their housing decisions is the tenure status of very old adults. Only four of the 30 reviewed studies that recorded the tenure status of older adults compared the influence of being a renter or an owner on the housing decision. Yet owners and renters have been shown to have different residential mobility patterns [ 122 , 123 ]. Older adults with a renter profile might move more often, and this may decrease their attachment to home, which in turn appears to be an influential factor in housing decisions. Some factors identified through this review also lack supporting scientific evidence, such as having a pet, and the experience of falls. For instance, pet ownership has been shown to have an important influence on the health of older adults in other contexts but has been mostly ignored in the context of housing decisions. The experience of falls has also been investigated in other contexts as it is a leading cause of injury-related hospitalization among older adults [ 124 ] and is the cause of most hip fractures [ 125 ], but its impact remains almost unexplored in the housing decision context. This may be because older adults seriously injured by a fall are often directly discharged into a long-term care facility [ 124 ] without having had the opportunity to participate in a proper decision-making process.

Limitations

Our search strategy had some limitations. First, it mostly targeted databases of English-language publications. Search strategies in other languages such as French and Spanish may have found more local publications which could also have been relevant. The strategy also oriented the search results towards literature on relocation and less on staying at home. In the future, the search term “aging at home” and its synonyms could provide a broader understanding of the decision to stay at home.

Second, we did not perform all screening steps in duplicate which could have introduced a selection bias during the screening stage. However, the kappa k calculated during the pre-test suggested an excellent agreement between the two authors.

Third, the results of this review also suffer from an ethnocentric bias, as most of the studies reviewed come from Anglo-Saxon majority and higher-income countries. The proportion of these populations aged 60 years or older was greater than 20% in 2015 and is projected to be higher than 25% by 2050 [ 1 ]. This may not be surprising, as in Asian, African or Central and South American countries, for cultural reasons, families tend to keep their older relatives at home with them. Adding the perspective of other cultural approaches to housing in old age could be enlightening and suggest new housing solutions for older adults.

This systematic literature review reveals the diversity of factors influencing the housing decisions of older adults. It confirms that these decisions are complex and multidimensional, and that health, safety and functional autonomy are only a few of the factors that should be considered to understand what is at stake in this type of decision and to better support older people. Important influences relate to the built environment, as well as to the social, psychological, psychosocial, spatiotemporal and decisional contexts of older adults. Several gaps in the literature were identified, mainly regarding the housing decisions of very old adults, frail older adults and the different factors that affect renters and owners.

This review also highlights the fact that this field of research is still in its infancy in terms of embracing the transdisciplinary complexity of meeting an increased demand for care and services while taking into account the importance of feeling-at-home for older adults. That said, it is surprising, albeit worrisome, that with all policies and research funding on aging put forward in the last 20 years or so, a review of scientific evidence published since 1990 on this topic has identified so few that explore decision-making about housing options, and even fewer that have identified a comprehensive collection of relevant factors. Our analysis underlines the different directions taken by each discipline and the consequences of their different methodological approaches. It brings to light the importance not only of engaging all the concerned disciplines in this field of research but of putting together multisectoral teams with complementary methodological perspectives and developing collaborative methodological approaches. Knowledge exchange is also needed so that each discipline is aware of knowledge emerging in the others. The proposed framework presented herein is a first step to bridge-building between different disciplines interested in housing decisions among older adults. Our results will guide the future development of decision guides to support healthcare professionals, older adults and their caregivers in making housing decisions.

This review emphasizes the importance of adapting dwellings and communities to older adults wishing to stay at home in the residential environment that they know and value. It also pushes us to reconsider how we design alternative housing for frail older adults. In addition to safety considerations, alternative housing should also integrate meaning-of-home considerations that could help older adults adapt to their new dwelling and rebuild their feeling of being-at-home. We hope that our results will also provide housing and healthcare professionals, policy makers, housing authorities, relocation counsellors, real estate agents and developers with the evidence they need to adopt a holistic approach in addressing the needs of older adults, not only in making housing decisions but also in providing them with alternative housing that is suitable for them.

Supporting information

S1 appendix, s1 checklist, acknowledgments.

The authors wish to thank Louisa Blair for editing this article and members of the Canada Research Chair in Shared Decision Making and Knowledge Translation for constructive feedback on the methodology construction and preliminary analysis.

Funding Statement

This research was funded by Canadian Frailty Network (known previously as Technology Evaluation in the Elderly Network, TVN), supported by Government of Canada through Networks of Centres of Excellence (NCE) Program (CORE 2013-56). NR was supported by a Canadian Frailty Network scholarship. FL holds a Tier 1 Canada Research Chair. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Data Availability