phd thesis in palliative care

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Palliative Care

• Entry year 2024
• Duration Part time 5 Years

Education in palliative care is valued across Europe and also internationally, particularly in resource poor countries. This PhD is the first doctoral programme to be offered globally, and the first to support the education of palliative care professionals - generating knowledge that’s relevant and applicable to their working contexts.

The Division of Health Research is home to the International Observatory on End of Life Care and a number of staff who are internationally recognised experts in this field of study. The PhD in Palliative Care is your chance to work with world-leading academics on the production of a thesis that makes an original contribution to knowledge development within your area of professional practice.

Combining innovative distance learning and an annual Academy held at the University, the programme will help you to gain an understanding of the development of end of life services; movements in different settings and cultures around the world; the models of care that have been adopted; and the issues involved in assessing the impact of these – individually, socially and societally.

This part-time, flexible doctorate runs over a minimum of four and a maximum of seven years. The programme begins with a compulsory five-day Induction Academy at the University. Each of the subsequent academic years start with a compulsory three-day Academy, while the rest of the course is delivered via e-learning. Attendance at the annual Academies is compulsory until you are confirmed on the PhD programme.

Throughout your studies, we will support you as you enhance your leadership skills and effectiveness, and develop advanced skills in research design, practice and dissemination. You’ll foster critical approaches to the review of evidence and improve your written and oral presentation skills.

Your department

• Division of Health Research Faculty of Health and Medicine
• Telephone +44 (0)1524 592032

Podcast: Palliative Care

Meet the researchers pioneering improvements to end of life.

Seeing patients die without the best in palliative care inspired former nurse Professor Nancy Preston to seek ways of improving end-of-life care for the terminally ill and their families. Talking to her colleague – also a former nurse - Professor Sheila Payne, the pair discuss their pioneering work which sets out to make “a good death” available to every patient by offering proper pain management and support for both the dying and their families.

Entry requirements

Academic requirements.

2:1 Hons degree (UK or equivalent) in a relevant subject and relevant work experience.

We may also consider non-standard applicants, please contact us for information.

If you have studied outside of the UK, we would advise you to check our list of international qualifications before submitting your application.

Additional Requirements

As part of your application you will also need to provide a 500 word research proposal. Guidance for writing a research proposal can be found on our writing a research proposal webpage.

English Language Requirements

We may ask you to provide a recognised English language qualification, dependent upon your nationality and where you have studied previously.

We normally require an IELTS (Academic) Test with an overall score of at least 6.5, and a minimum of 6.0 in each element of the test. We also consider other English language qualifications .

Contact: Admissions Team +44 (0) 1524 592032 or email [email protected]

Course structure

You will study a range of modules as part of your course, some examples of which are listed below.

Information contained on the website with respect to modules is correct at the time of publication, but changes may be necessary, for example as a result of student feedback, Professional Statutory and Regulatory Bodies' (PSRB) requirements, staff changes, and new research. Not all optional modules are available every year.

The aim of this module is to provide students with an advanced introduction to the methods commonly used in health research. Students will gain knowledge and understanding of:

• How to use Moodle for distance learning and engage with peers and staff online
• Using the library as a distance learning student
• How to search the literature
• Using End Note
• How to synthesise evidence
• Standards of academic writing
• The nature of plagiarism and how to reference source material correctly
• Theoretical perspectives in health research
• The practical process of conducting research
• How to formulate appropriate questions and hypotheses
• How to choose appropriate methodology
• Quantitative and qualitative research method
• Research ethics
• Disseminating and implementing research into practice
• Programme-specific research.

e-learning distance module

Autumn Term (weeks 1-10, October-December)

Credits: 30

Mode of assessment : 3000 word essay (75%) and a poster (25%).

This module gives an overview of palliative care, starting from a broad perspective looking at historical and global issues and narrowing down the focus to definitions, models of service delivery, teamwork issues, timing of palliative care, and palliative care interventions. We also focus on some specific issues of conducting research in palliative care.

Deadline: January

Spring Term (weeks 1-10, January-March)

Mode of assessment : 5000 word essay

This module explores the philosophical underpinnings of research. It begins with an introduction to epistemology, i.e. the philosophical basis of knowledge and its development. It then considers the influence of different epistemological bases on research methodology and explores the role of theory and theoretical frameworks in the research process. It also examines the nature of the knowledge that underpins evidence-based policy and practice and introduces the fundamental principles of ethics.

Deadline: April

Sunmer Term (weeks 1-10, April-June)

Mode of assessment : 5000 word assignment consisting of two 2500 word components

This module introduces a range of methods used in health research. The focus is on justifying research design choices rather than practical skills in data analysis. The starting point is the development of meaningful and feasible research questions. The module then introduces a range of quantitative research designs and quantitative approaches to data collection. Next, the module looks at qualitative research designs and their relation to different epistemological positions. How to integrate quantitative and qualitative methods into mixed methods research is being discussed next. The module also explores issues such as sampling and quality across different research designs.

Deadline: July

Spring term (weeks 1-10, January-March)

Mode of assessment : two pieces of written work (Qualitative data analysis, 2500 words; Quantitative data analysis, 2500 words)

This module is an introduction to the theory and practice of qualitative and quantitative data analysis. The module consists of two distinct parts: qualitative data analysis and quantitative data analysis. Within each part, there will be an option to take an introductory or an advanced unit.

The introductory quantitative unit covers data management and descriptive analyses and introduces students to inferential testing in general and statistical tests for comparisons between groups specifically. The advanced quantitative unit covers linear regression as well as regression methods for categorical dependent variables and longitudinal data before exploring quasi-experimental methods for policy evaluation and finally providing an opportunity to discuss more specific regression methods such count data models or duration analysis.

The introductory qualitative unit focusses on the technique of thematic analysis, a highly flexible approach and useful foundation for researchers new to qualitative data analysis. The unit takes students through the stage of a qualitative data analysis: sorting and organising qualitative data, interrogating qualitative data, interpreting the data and finally writing accounts of qualitative data. The advanced qualitative unit introduces students to alternative techniques such as narrative analysis or discourse analysis.

Summer Term (weeks 1-10, April-June)

Mode of assessment : A written assignment that includes: a) a 4000 word research proposal and b) a completed FHMREC ethics application form and supporting documents.

This module completes the taught phase of Blended Learning PhD programmes. It enables students to put everything they have learned so far together and produce a research proposal that will provide the basis for the research phase of the programme.

The first part of the module – research design – starts by discussing the components of a research proposal according to different epistemologies and research methods. It then takes students through the process of developing their own proposal, starting with the topic and epistemological framework, through to the study design and data collection methods and finally the practical details.

The second part of the module – practical research ethics – teaches students how to think about their research proposal from an ethical perspective. It covers ethical guidelines and teaches students how to identify the purpose of a guideline, to enable them to translate their proposal into an ethical review application. Finally, students will prepare a practice research ethics application using the FHMREC ethics application form.

Autumn term (weeks 1-10, October-December)

Mode of assessment : 5000 word assignment

This module provides an introduction to the principles and components of systematic reviewing. It takes students through the key steps of a systematic review. The starting point of the module is the construction of an appropriate review question. Next, the module discusses the (iterative) process of creating a search strategy that successfully identifies all relevant literature. The module then moves on to selecting appropriate methodological quality criteria, enabling students to develop their skills in critically appraising studies. After discussing how to prepare a data extraction form the module introduces a key component of a systematic review: synthesising the evidence. Finally, the module will teach students how to put everything together in a systematic review protocol.

Fees and funding

Home Fee £4,350

International Fee £11,340

General fees and funding information

There may be extra costs related to your course for items such as books, stationery, printing, photocopying, binding and general subsistence on trips and visits. Following graduation, you may need to pay a subscription to a professional body for some chosen careers.

Specific additional costs for studying at Lancaster are listed below.

College fees

Lancaster is proud to be one of only a handful of UK universities to have a collegiate system. Every student belongs to a college, and all students pay a small College Membership Fee  which supports the running of college events and activities. Students on some distance-learning courses are not liable to pay a college fee.

For students starting in 2023 and 2024, the fee is £40 for undergraduates and research students and £15 for students on one-year courses. Fees for students starting in 2025 have not yet been set.

Computer equipment and internet access

To support your studies, you will also require access to a computer, along with reliable internet access. You will be able to access a range of software and services from a Windows, Mac, Chromebook or Linux device. For certain degree programmes, you may need a specific device, or we may provide you with a laptop and appropriate software - details of which will be available on relevant programme pages. A dedicated  IT support helpdesk  is available in the event of any problems.

The University provides limited financial support to assist students who do not have the required IT equipment or broadband support in place.

For most taught postgraduate applications there is a non-refundable application fee of £40. We cannot consider applications until this fee has been paid, as advised on our online secure payment system. There is no application fee for postgraduate research applications.

For some of our courses you will need to pay a deposit to accept your offer and secure your place. We will let you know in your offer letter if a deposit is required and you will be given a deadline date when this is due to be paid.

The fee that you pay will depend on whether you are considered to be a home or international student. Read more about how we assign your  fee status .

If you are studying on a programme of more than one year’s duration, the tuition fees for subsequent years of your programme are likely to increase each year. Read more about  fees in subsequent years .

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Take an innovative approach to distance learning combining interactive lectures, webinars and online collaboration, group work and self-directed study.

Work with world-leading academics offering global perspectives in the field of palliative and end of life care.

Benefit from an international peer group of health workers, including clinicians, clinical service managers, researchers, educators, and policy developers.

Studying by blended learning

The PhD in Palliative Care is offered part-time via blended learning . Teaching and research activities are carried out through a combination of face-to-face and online interaction, allowing you to undertake the majority of study from your own location whilst fulfilling your existing responsibilities. You will benefit from being part of a UK and internationally-based peer group working across a range of sectors.

Face-to-face interactions take place at an annual residential autumn Academy while taught modules are delivered via distance learning using our virtual learning environment and include discussion forums, collaborative digital spaces and video conferencing. All students have access to a hub space that facilitates interaction with their cohort and with students on related programmes, creating a virtual information space that’s also sociable. An academic tutor will support you during the taught phase and two supervisors provide you with support in the research phase.

Years 1 and 2

Years 1 and 2 provide you with training in research and in the theory and practice underpinning healthy organizations. Your specialist module in Year 1 is Palliative Care, which is studied alongside the Philosophy of Research, and, Research Design. In Year 2 you will undertake the following modules: Systematic Reviews; Data Analysis; and Advanced Research Planning.

The Palliative Care module examines the historical and comparative perspectives in palliative care policy and practice in different settings and cultures around the world. You will explore how hospice and palliative care have evolved in different resource settings; the models of care that have been adopted; and the issues involved in assessing the impact of these – individually, socially and societally. Through the course of this module you'll gain insight into the field of palliative and end of life care through perspectives and debates within the social sciences. You'll also explore issues associated with the specific concerns of palliative care research. Your studies will relate closely to the ongoing research programmes of the International Observatory on End of Life Care (IOELC), and you'll have access to a unique set of electronic and paper based archives as well as a major library collection of journals, books and grey literature.

The remaining five taught modules (10 weeks each) are taught across programme streams with peers from a range of other backgrounds, but you are encouraged to consider this teaching from the perspective of palliative and end of life care – applying it as you build towards the final module where you fire up your independent research proposal and ethics application.

Years 3 to 4/5 see you undertake a research project in Palliative Care, which will conclude with the submission of your 35,000 word thesis. The project will be supervised from the University but undertaken in your own location or workplace. Supervisions can be via telephone, e-mail or Skype, depending on preference. Face-to-face meetings with your supervisors will take place during the annual academy.

We aim to provide an opportunity for students - many of whom are working in hospice and palliative care services of various kinds - to develop a critical orientation and a portfolio of skills relating to research and evaluation in the field. We encourage the development of general skills that will be of use throughout the programme. These include critical engagement with reading materials, the ability to effectively synthesise materials, and to use research evidence critically in supporting your arguments.

Dr Lynn Bassett, PhD Palliative Care graduate

"Blended learning offered me an opportunity for doctoral study. However, distance learning has its challenges; it demands self-motivation and determination in a process that is conducted, mostly, alone. Autumn Academies provided bases for networking and peer support and I value greatly the firm friendships made across international and interdisciplinary boundaries. In the last year, I emerged with a new thirst for excellence, greater humility, clarity of thought and confidence in my thesis. The persistence and hard work paid off; I have achieved, I have grown, I am changed."

The Division of Health Research

The Division of Health Research have been offering blended learning postgraduate programmes since 2010. We have many successful graduates and currently around 200 continuing students on a range of programmes who have benefited in progressing their careers from the high quality postgraduate education we provide.

Our research in ageing

Finding solutions to the major global challenges of disease prevention and care for an ageing population.

International Observatory on End of Life Care

High quality cutting edge research and innovative educational programmes to improve palliative and end of life care for patients and family carers.

Centre for Ageing Research

Interdisciplinary research and promotes research-led teaching around ageing, older people and age-related disease.

Athena Swan: gender equality at Lancaster

We hold the Athena SWAN Silver Award, recognising our commitment to advancing the careers of women in higher education and research.

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Doctor of Philosophy (PhD) in Palliative Care and End of Life

Undertake a phd in palliative care, death and dying.

Make a difference when it matters most.

Death and dying is a part of everyone’s life. Through our palliative care research, we support health professionals and health systems in delivering care as well as empowering the community to recognise and support individuals and families who are facing the reality of dying.

There are a range of exciting PhD opportunities aligned to the Research Centre for Palliative Care, Death and Dying, that explores the universal experience of death and dying and champions the contribution of palliative care to the person the health professional and the health system.

The Research Centre for Palliative Care, Death and Dying supports diversity and warmly welcomes applications from Aboriginal and Torres Strait Islander candidates and those with lived experience of disability or marginalisation. We also welcome and encourage your own research project ideas.

Research supervisors 

How to apply 

Enquire 

Doctor of Philosophy (Nursing)

Duration: 4  years

Delivery mode: In Person

Location: Bedford Park

CRICOS code:  106270H

Annual fees: 2024: $40,700

Further information on fees listed

Master of Science (Nursing)

Duration: 2  years

CRICOS code:  106281E

Doctor of Philosophy (Nursing) / Master of Business Administration (Future Business)

Duration: 5  years

CRICOS code:  113534H

Annual fees: 2024 MBA (Future Business): $59,200 2024 PhD (Nursing): $40,700

Why undertake a PhD in Palliative Care, Death and Dying at Flinders

• Join our highly collaborative research culture in the Research Centre for Palliative Care, Death and Dying, working alongside and with highly qualified researchers and supervisors who are nationally and internationally recognised in the field of ageing, caring, dying and grieving. Our Flinders’ palliative care researchers are experience nurses and health practitioners and leaders in research in clinical and service delivery, communication, advance core planning, choice and advocacy, evidence analysis and synthesis and translation. Our research supervisors draw on their extensive knowledge to extend care in communities around Australia and the world
• Benefit from our partnerships with government, service providers, industry and community.
• Build on your research, complex problem-solving and analytic skills in a highly supportive environment.

PhD opportunities

Potential areas of research focus could be:

• Allied Health and interventions to enable function and occupation at the end of life
• Developing palliative care knowledge and skills across the hospital workforce: What works and why?
• How do minority/ethnically diverse groups experience grieving and bereavement?
• What are the needs of families to enable them to continue to engage with an older person living and dying in residential aged care?
• End of life scope and practice of different members in the aged care workforce
• Public health approaches to addressing systems integration at end of life
• Determining effectiveness of digitally disseminated resources on knowledge and practice.

We also welcome and encourage your own research project ideas. The Research Centre for Palliative Care, Death and Dying supports diversity and warmly welcomes applications from Aboriginal and Torres Strait Islander candidates and those with lived experience of disability or marginalisation.

Your career

A PhD will provide you with expert knowledge and position you for senior roles in healthcare, aged care, community organisations, policy, academia, human services or the funeral industry.

Potential occupations include:

• Palliative care leader
• Health leader and practitioner
• Industry advocate
• Policy and engagement work
• Researcher.

Potential employers include:

• Aged care industry
• Public service
• Community work
• Universities.

Caring Futures Institute

The Caring Futures Institute is Australia’s first fully dedicated research centre for the study of self-care and caring solutions leading to better lives, better communities, better care and better systems across the population’s lifespan.

Research Centre for Palliative Care, Death and Dying (RePaDD)

Our mission at the Research Centre for Palliative Care, Death, and Dying (RePaDD) is to make a difference to care at the end of life. 

Potential research supervisors

Flinders’ palliative care researchers are experience nurses and health practitioners and leaders in research in clinical and service delivery, communication, advance core planning, choice and advocacy, evidence analysis and synthesis and translation. Our research supervisors draw on their extensive knowledge to extend care in communities around Australia and the world. 

Dr Deidre Morgan

Learn what to prepare before approaching a potential research supervisor.

Ready to find the perfect supervisor for your research journey? Explore Research @ Flinders.

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Palliative care and nursing in dissertations and theses in Portugal: a bibliometric study

Affiliations.

• 1 Instituto de Ciências Biomédicas Abel Salazar, Lousada, Porto, Portugal.
• 2 Unidade de Cuidados à Comunidade de Lousada, Lousada, Porto, Portugal.
• 3 Escola Superior de Enfermagem de Coimbra, Coimbra, Portugal.
• 4 Universidade do Porto, Faculdade de Medicina, Porto, Portugal.
• 5 Escola Superior de Enfermagem do Porto, Porto, Portugal.
• PMID: 27384213
• DOI: 10.1590/S0080-623420160000200019

Objective: To identify the academic scientific production on palliative care in master dissertations and PhD theses carried out by nurses in Portugal.

Method: A descriptive retrospective study of bibliometric type with search for the abstracts available in repositories of higher education institutions in the period 2000-2014.

Results: Of the 1814 papers identified, 249 met the inclusion criteria (ten doctoral theses and 239 master dissertations). The most representative methodological approach was quantitative (31.35%) and the most studied area was family/informal caregiver (20.69%). The most studied target population were the students/health professionals (38.51%).

Conclusion: The academic scientific production in this area has been growing in spite of the need for continued investment in order to fill the identified gaps.

Objetivo: Identificar a produção científica académica sobre cuidados paliativos nos estudos de mestrados e doutoramentos efetuados por enfermeiros em Portugal.

Método: Estudo descritivo e retrospetivo, do tipo bibliométrico, recorrendo aos resumos disponíveis nos repositórios das instituições de ensino superior no período 2000-2014.

Resultados: Dos 1814 trabalhos identificados, 249 corresponderam aos critérios de inclusão (10 teses de doutoramento e 239 dissertações de mestrado). A abordagem metodológica mais representativa é a quantitativa (31,35%), a área mais estudada foi a família/cuidador informal (20,69%) e a população-alvo mais estudada foram os estudantes/profissionais de saúde (38,51%).

Conclusão: A produção científica académica nessa área tem vindo a crescer. Embora exista necessidade de investimento contínuo de forma a colmatar as lacunas identificadas.

• Academic Dissertations as Topic*
• Bibliometrics*
• Palliative Care*
• Retrospective Studies

Do a more advanced search »

Search for dissertations about: "palliative care"

Showing result 1 - 5 of 95 swedish dissertations containing the words palliative care .

1. Quality improvement in palliative care : the role of a national quality register and perceptions of information during palliative chemotherapy

Author : Lisa Martinsson ; Bertil Axelsson ; Christina Melin-Johansson ; Per Fransson ; Kerstin Sandelin ; Umeå universitet ; [] Keywords : MEDICIN OCH HÄLSOVETENSKAP ; MEDICAL AND HEALTH SCIENCES ; Cancer ; chemotherapy ; communication ; end-of-life care ; oncology ; palliative care ; palliative medicine ; quality in healthcare ; quality register ; onkologi ; Oncology ;

Abstract : IntroductionThere is a need in palliative care for development of structured methods to assess quality and support improvement. This need is present both within and outside specialised palliative care.Honest information from physicians is regarded as an important part of palliative care. READ MORE

2. Quality in palliative care from the patient perspective : Instrument development, perceptions of care received and the importance of care

Author : Tuva Sandsdalen ; Bodil Wilde-Larsson ; Selvald Høye ; Ingrid Rystedt ; Vigdis Grøndahl Abrahamsen ; Reidun Hov ; Britt-Marie Ternstedt ; Karlstads universitet ; [] Keywords : MEDICIN OCH HÄLSOVETENSKAP ; MEDICAL AND HEALTH SCIENCES ; organization-related conditions ; palliative care ; patient perspective ; person-related conditions ; psychometric evaluation ; quality of care ; QPP-PC ; systematic review ; organisasjonsrelaterte forhold ; palliative behandling og omsorg ; pasient perspektiv ; personrelaterte forhold ; psykometrisk evaluering ; kvalitet ; QPP-PC ; systematisk oversikt ; Nursing Science ; Omvårdnad ;

Abstract : The overall aim was to investigate the quality of palliative care from the patient perspective, to adapt and psychometrically evaluate the Quality from Patients’ Perspective instrument specific to palliative care (QPP-PC) and investigate the relationship between the combination of person- and organization-related conditions and patients’ perceptions of care quality.Methods: In the systematic literature review (I), 23 studies from 6 databases and reference lists in 2014 were synthesized by integrative thematic analysis. READ MORE

3. Specialized palliative home care teams : Complementary perspectives of team functions and influences on patients and families

Author : Anna Klarare ; Carina Lundh Hagelin ; Bjöörn Fossum ; Carl Johan Fürst ; Johan Hansson ; Maria Carlsson ; Sophiahemmet Högskola ; Karolinska Institutet ; Karolinska Institutet ; [] Keywords : MEDICIN OCH HÄLSOVETENSKAP ; MEDICAL AND HEALTH SCIENCES ; Palliative home care ; Teamwork ; Patient ; Family ; Health care professional ; palliative home care ;

Abstract : Persons with life-threatening illness are increasingly being cared for and dying at home. Palliative care strives to cater to multiple dimensions such as physical, psychosocial and spiritual or existential, and meeting these needs in patients and families requires multiple competencies. READ MORE

4. Constipation in palliative care : Prevalence, definitions, symptom distress and risk-factors

Author : Eva Erichsén ; Maria Friedrichsen ; Anna Milberg ; Tiny Jaarsma ; Linköpings universitet ; [] Keywords : MEDICIN OCH HÄLSOVETENSKAP ; MEDICAL AND HEALTH SCIENCES ; MEDICIN OCH HÄLSOVETENSKAP ; MEDICAL AND HEALTH SCIENCES ; MEDICIN OCH HÄLSOVETENSKAP ; MEDICAL AND HEALTH SCIENCES ; Palliative care ; constipation ; prevalence ; definition ; symptom-distress ; risk factors ;

Abstract : Background and aims: Constipation for patients in palliative care is common and described with variations in prevalence. Side -effects from opioid- treatment, is considered to be one of the main factors leading to constipation. READ MORE

5. Prerequisites for palliative care provision in intensive care

Author : Hanan Hamdan Alshehri ; Göteborgs universitet ; [] Keywords : MEDICIN OCH HÄLSOVETENSKAP ; MEDICAL AND HEALTH SCIENCES ; Palliative care ; end-of-life care ; Saudi Arabia ; organizations ; health care professionals ; perceptions ;

Abstract : Palliative care provision is aimed at improving patients’ quality of life when cure no longer possible through healthcare systems, including intensive care. It has been ob-served that ongoing challenges exist concerning integration of palliative care into inten-sive care contexts. READ MORE

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Lisa M. Thompson

Associate professor of family health care nursing, University of California, San Francisco

This study explored palliative care provider self-competence and priorities for future education in an inpatient hospice setting in Kenya. Self-competence scores for clinical skills and patient and family communication skills were hypothesized to differ according to provider type. A descriptive, cross-sectional study design was piloted at Kimbilio Hospice, a 26-bed rural, inpatient facility in Kenya. A quantitative survey instrument entitled, “Self assessment of clinical competency and concerns in end-of-life care,” was administered to participants. Survey responses were collected from 5 clinical staff, 11 caregivers, and 8 support staff. Data were analyzed using Kruskal-Wallis test to compare between mean scores. Statistically significant differences were found in 5 self-competence variables: performing a basic pain assessment, use of oral opioid analgesics, assessment and management of nausea/vomiting and constipation, and discussing an end-of-life prognosis with a patient’s family member ( P < .05). Sixteen participants (66%) selected pediatric palliative care as their top priority for future education. The findings support the hypothesis that palliative care providers have varying levels of self-competence.

Improving education to build palliative care competencies in adult and pediatric palliative care in sub-Saharan Africa is recommended.

Access to palliative care in developing countries is a global health challenge. In sub-Saharan Africa, palliative care research and practice have been rapidly developing since 2007, when the Venice Declaration and the World Health Organization (WHO) proposed strategies to develop and improve the quality of palliative care education and service provision in developing nations. 1 However, access to palliative care services is complicated by resource constraints and a health care worker shortage that prevents the delivery of high-quality services to underserved patients. 2 Given that one in 200 individuals in Africa needs palliative care annually, palliative care must be expanded to alleviate the suffering of patients with life-threatening illnesses. 3 This task requires the implementation of robust, comprehensive palliative care services throughout sub-Saharan Africa based on the needs of patients, providers, and communities. While research in sub-Saharan Africa has appropriately focused on palliative care patients, 4 – 7 few studies have investigated palliative care providers’ experiences thus far. 2

In Kenya, momentum is building to expand the provision of high-quality palliative care. Through the Kenya Hospices and Palliative Care Association, which coordinates the efforts of public, private, and nongovernmental organizations, 30 000 patients received palliative care services through 70 service providers in 2012. 8 In 2008, Kenya Hospices and Palliative Care Association collaborated with the End-of-Life Nursing Education Consortium from the United States to train 49 nurses, physicians, social workers, and nursing faculty in palliative care topics, resulting in the improvement of palliative care content in bachelor of science nursing curricula. 9 While advocacy and collaboration facilitate the growth of palliative care infrastructure in Kenya, poor access to care remains a formidable challenge. Moreover, a dearth of information exists about Kenyan palliative care providers, whose perspectives are crucial for the development of evidence-based palliative care services in this country. 1 , 10 , 11

Nurses have more contact with palliative care patients than other health care workers in sub-Saharan Africa and globally; thus, it is imperative to improve nurses’ competency in providing services to patients with life-threatening illnesses. 12 , 13 However, nurses have insufficient professional training to provide end-of-life care in sub-Saharan Africa because of a lack of education. As a result of the gap between professional education and clinical practice, the WHO has recommended that palliative care become a core component of training and continuing professional education for nurses. 14 , 15 Some palliative care studies have assessed patient needs and preferences in sub-Saharan Africa, but few have assessed provider preferences and priorities for education. 1 Ugandan health care professionals identified pediatric palliative care as an important area for expanded education and emphasized that pediatric communication, pain management, and psychological issues were the top three priorities. 16 Recommendations to improve palliative care education for health care providers include interdisciplinary team building, advocacy, reliable supply chains for opioids and other pain medications, and palliative care curricula for nursing and medical education. 17 Research is needed to assess priorities for education and training among palliative care providers and hospice staff.

One framework that can be used to evaluate palliative care provider perspectives and needs is based on the shared theory of self-competence proposed by Desbiens et al. 18 This concept combines Bandura’s 19 Social Cognitive Theory with Orem’s Self-care Model and examines both nursing and patient concepts in palliative care, which impact the therapeutic relationship between nurses and patients with life-threatening illnesses. Whereas a functional definition of competence is the actual capability of an individual to utilize various subskills (eg, cognitive skills), knowledge, values, and attitudes into an action that serves a specific purpose, 18 self-competence denotes an individual’s perception of his or her competence. Desbiens’ shared theory argues that nurses with higher self-competence provide better care than do nurses with lower self-competence. 18 , 20 As a theoretical concept yet to be studied, self-competence explores the relationship between palliative care provider competence and the quality of palliative care services. In developing countries such as Kenya, assessing and improving provider self-competence have the potential to identify areas for improvement and bolster palliative care services. Based on the principles of this shared theory, a survey instrument assessing palliative care provider self-competence was selected to address the study aims.

The purposes of this study were to (1) assess palliative care self-competence in both clinical care and patient and family interactions and (2) assess provider priorities for education among palliative care providers and hospice staff in the Rift Valley Province in Kenya. We hypothesized that self-competence would differ between 3 groups of palliative care providers (clinical staff, support staff, and care-givers) in the inpatient setting of Kimbilio Hospice.

A descriptive cross-sectional pilot study was conducted to assess palliative care provider self-competence in both clinical care and patient and family interactions and priorities for education.

Kimbilio Hospice is a rural, palliative care facility located approximately 200 miles north of Nairobi, Kenya. 21 This 26-bed hospice was opened in 2010 through Living Room International (LRI), a Kenyan nongovernmental organization, to provide quality palliative care services to adults and children living with life-threatening illnesses. Kimbilio Hospice (Kiswahili for “refuge”) provides inpatient hospice services to patients who have been referred from local hospitals or clinics or who have been diagnosed with life-threatening illnesses. A total of 229 patients were admitted to Kimbilio Hospice in 2013, including 94 men and 135 women, a majority of whom are younger than 60 years (70%), and 82 of whom died at the hospice. 21 The most common illnesses that children and adults at Kimbilio present with are HIV/ AIDS (59%) and cancer (40%), along with failure to thrive, malnutrition, and tuberculosis. 21 The interdisciplinary team of palliative care providers and staff includes 3 registered nurses, 2 clinical officers (a similar role to physicians), a chaplain, 3 social workers, 3 community health workers, 2 physical therapists, 12 nursing assistants (called care-givers), and other support staff including cooks and administrators. Kimbilio Hospice provides holistic services including pain and symptom management, physical therapy, spiritual and social support, nutritional support, HIV medication management, wound care, and bereavement support. In addition, Kimbilio Hospice has access to oral morphine to provide effective pain management to their patients, along with other adjuvant analgesics.

The research team from the University of California, San Francisco (UCSF), School of Nursing, met with the LRI management team in December 2013 to discuss the study and the recruitment of eligible Kimbilio Hospice clinical and support staff. All hospice staff providing palliative care services (n = 25) were invited to participate in the study. Study inclusion criteria were as follows: adult (≥18 years old), hospice staff who provide palliative care services at Kimbilio Hospice based on scope of practice and job descriptions, able to give informed consent, and able to speak English fluently. The participants were grouped into clinical staff (including nurses and clinical officers), support staff (including social workers, chaplains, physical therapists, and community health workers), and caregivers (those who provide assistance with activities of daily living in a role similar to certified nursing assistants in the United States). Demographic data collected included gender, number of years worked in palliative care, role at Kimbilio Hospice, and whether the participant had received formal training in palliative care outside of LRI.

The Committee on Human Research at UCSF reviewed and approved the study. Although an ethics review board does not exist at LRI, the management team was involved in the design of the study and approved the final version of the survey. Informed written consent was obtained from each participant prior to the survey.

Data Collection

Surveys were conducted with each individual participant in a private room between December 2013 and January 2014. The WHO definition of palliative care was read to each participant. 14 The investigator read the questions out loud in order for participants of all literacy levels to participate and to ensure accuracy. Likert scale responses were recorded by the investigator on the survey instrument prior to being submitted for analysis.

Instruments

Researchers completed the “Self-assessment of Clinical Competency and Concerns in End-of-Life Care” survey with each participant. The survey instrument was adapted from a questionnaire, “A Survey of Competencies and Concerns in End-of-Life Care for Physician Trainees,” developed by Weissman et al. 22 The questionnaire was originally administered to medical students and residents in the United States to assess competency and ethical concerns and to design future palliative care educational programs. In the original survey, 4 palliative care topics were assessed: (1) competencies and comfort in end-of-life communication topics, (2) management of end-of-life medical issues, (3) comfort with treatment withdrawal, and (4) ethical concerns in common end-of-life scenarios. 22 The instrument has not been formally validated with an original audience, and psychometrics have not been reported (personal email communication, Dr Weissman, April 7, 2014). However, the survey is used in palliative care education across the country, and permission was granted to use the survey in this article following the survey administration. The authors adapted the above topics from this instrument because to their knowledge instruments did not exist that survey palliative care providers in developing countries or sub-Saharan Africa.

Section I of the survey measured palliative care provider self-competence. In this section, domain I assessed clinical care (questions 1–12), describing all tasks performed by clinical personnel (eg, assessment and management of nausea). Domain II assessed patient and family interactions (questions 13–21), describing tasks that could be performed by clinical and nonclinical personnel (eg, conducting a family conference). A Likert scale was used to assess self-competence (1 = need further basic instruction, 2 = competent to perform with minimal supervision and coaching, 3 = competent to perform with team consultation, 4 = competent to perform independently). A “not applicable to my role” answer choice was included based on consultation with LRI staff because not all items tested were within the job descriptions or scope of practice of all study participants.

In section II, participants were asked to rate their priorities for 10 palliative care education and training topics using a Likert scale (1 = not at all a priority, 2 = somewhat a priority, 3 = a priority, 4 = definitely a priority). Once participants had completed the questions, they were asked to highlight their top 3 priority topics for future education and training. A section eliciting providers’ priorities for future education was added to the original survey based on conversations with the LRI staff team. In this article, the results on ethical concerns in common end-of-life scenarios are not reported.

In order to adapt Weissman and colleagues’ 22 survey to a rural inpatient hospice setting in Kenya, the LRI management team reviewed and piloted survey drafts so that questions were contextually appropriate. For instance, the word “physician” was removed from the survey and replaced with “palliative care providers and staff” because no physicians work at Kimbilio Hospice. After the survey was piloted, the original survey response choice of 3, “competent to perform with minimal supervision,” was replaced with “competent to perform with team consultation,” because Kimbilio Hospice staff are instructed to perform many tasks through team consultation. Questions about pediatric palliative care were added to sections I and II because many pediatric patients are seen at the hospice, and the management team viewed pediatric skills as vital. The topic in the original survey that covered comfort with treatment withdrawal was incorporated into section I on self-competence. Prior to the survey administration, the researchers agreed upon a set of standardized definitions of complex terms or phrases (eg, urosepsis), so that participants could understand the terms and reliability of the data could be maintained. Measurement reliability over time and over raters was stable, as the surveys were read verbatim in each participant interview by each researcher.

Statistical Analysis

For the analysis, the responses of providers were aggregated based on the groups of clinical staff, support staff, and caregivers. The means and SDs were determined for each question in each domain. Composite self-competence scores were calculated for the categories of clinical care (total possible score ranged from 12–48) and patient and family interactions (total possible score ranged from 9–36) in section I. Self-competence score differences among the 3 groups of palliative care providers were assessed using the nonparametric Kruskal-Wallis 1-way analysis of variance. An α < .05 was used to determine statistical significance in all statistical tests. In section II, the percentage of participants selecting each category as one of their top 3 priorities for future education was calculated for each variable.

Demographic Data

The sample included 24 palliative care providers and staff out of the 25 eligible participants at Kimbilio Hospice ( Table 1 ). One caregiver did not speak English and was therefore excluded. Participants included 5 clinical staff (21%), 8 support staff (33%), and 11 caregivers (46%). The majority of participants were female (54%) with 7 female caregivers, 4 female clinical staff, and 2 female support staff. The majority of participants reported formal training (eg, nursing school, certificate programs, other programs, or training outside Kimbilio Hospice) in palliative care (58%), including 80% of clinical staff, 63% of caregivers, and 38% of support staff. The median amount of time that staff had worked in palliative care was 2 to 3 years: clinical staff (0–1 years), support staff (2–3 years), and caregivers (3–4 years). Only 4 participants reported working in palliative care less than 1 year, all of whom were clinical staff.

Participant Demographics

Self-competence Scores

Mean self-competence scores grouped by provider type for domains I and II in section I are shown in Table 2 . Across all provider types, the total mean self-competence score for clinical care was 2.9 (SD, 0.84), and the total mean self-competence score for patient and family interactions was also 2.9 (SD, 0.94) on a scale of 1 to 4. The mean self-competence composite score (total possible range, 12–48) in the clinical care category across all providers was 26.4 (SD, 11.1). The mean self-competence composite score in the patient and family interactions category (total possible range, 9–36) was 22.3 (SD, 6.7). Clinical care mean self-competence scores were higher for clinical staff as compared with caregivers or support staff. The mean self-competence scores for patient and family interactions were the same for clinical and support staff and only slightly lower for caregivers.

Mean Self-competence Scores by Palliative Care Provider Type, Domains I and II

Abbreviation: NA, “not applicable to my role” answered by all participants in the group.

For the 5 clinical staff, the highest mean self-competence scores were the use of oral opioid analgesics (mean, 4.0), performing a basic pain assessment, and the assessment and management of nausea and vomiting, diarrhea, and constipation (all with mean of 3.8). The 3 lowest mean self-competence scores were discussing inpatient hospice referral, the use of intravenous/injectable opioid analgesics, and the assessment of pain in the pediatric patient (all with mean of 2.8). Clinical staff answered clinical care category questions with a response of 3 or 4 (3 = competent to perform with team consultation, 4 = competent to perform independently) 92% of the time, compared with 75% of the time for support staff and 70% for caregivers. In the patient and family interactions category, clinical staff responded with a 3 or 4 response 91% of the time, compared with 89% of the time for support staff and 66% for caregivers. All clinical staff responded to the questions in both clinical care and patient and family interactions categories by choosing from the 1- to 4-point Likert scale and did not select “not applicable to my role” for any question. Of 8 support staff, “not applicable to my role” was answered 43 times of 96 possible responses (45%) in the clinical care category and 19 times of 72 possible responses (26%) in the patient and family interactions category. Of 11 caregivers, “not applicable to my role” was answered 31 times of 132 possible responses (23%) in the clinical care category and 17 times of 99 possible responses (16%) in the patient and family interactions category.

There were statistically significant differences between palliative care provider types in 5 of the 21 self-competence variables: performing a basic pain assessment (Kruskal-Wallis H (2) = 7.220, P = .027), use of oral opioid analgesics ( H (2) = 8.366, P = .015), assessment and management of nausea and vomiting ( H (2) = 7.730, P = .021), assessment and management of constipation ( H (2) = 7.034, P = .030), and discussing an end-of-life prognosis with a patient’s family member ( H (2) = 7.794, P = .020). For all of these variables, clinical staff was more likely to report higher self-competence than support staff and caregivers. The 16 remaining self-competence variables were not found to be significantly different based on palliative care provider type. Post hoc analysis was not performed because of small sample size.

Priorities for Education

The majority of participants rated all future education categories as either “a priority” (3 on the Likert scale) or “definitely a priority” (4 on the Likert scale), with a total mean score of 3.4 of a total possible range of 1 to 4 (SD, 0.83). Sixteen providers (67%) selected pediatric palliative care as their top priority for education, 14 (58%) chose pain assessment and management, 11 (46%) chose spirituality in end-of-life care, 10 (42%) chose hospice care (the who, why, when, and where), and 6 (25%) chose end-of-life communication skills ( Table 3 ). None of the providers chose assessment and management of nausea and vomiting as a top priority.

Top 3 Priorities for Future Education

This pilot study is the first to elicit palliative care provider self-competence for nonphysician palliative care staff in Kenya. The results support the hypothesis that self-competence scores differ according to palliative care provider type. Some of these differences were expected given the scope of practice of nurses and clinical officers compared with that of nonclinical staff. For instance, for clinical skills such as performing a basic pain assessment and the assessment and management of constipation, one would expect that clinical staff have higher self-competence compared with nonlicensed caregivers. However, clinical staff surprisingly did not show higher self-competence in the use of parenteral opioid analgesics; use of adjuvant analgesics; assessment of pain in the nonresponsive or confused patient; or the assessment and management of pediatric pain, terminal delirium, terminal dyspnea, or fatigue when compared with other staff. All the previously mentioned clinical skills are crucial for symptom management and end-of-life care, although adjuvant analgesics (eg, tricyclics, steroids, anticonvulsants) and parenteral analgesics are rarely used at Kimbilio Hospice, and hospice skills are different from those required in inpatient settings. However, this finding identifies topics for future education, as these skills are within providers’ scope of practice. On the other hand, nonclinical staff felt competent performing some clinical skills that are outside their profession’s scope of practice, which warrants further investigation and clarification. Finally, support staff disclosed significantly higher self-competence in performing a basic pain assessment and discussing an end-of-life prognosis with a patient’s family member than caregivers. This finding may be expected, because support staff reported more years of formal training than did care-givers. However, caregivers and support staff both spend extended time with patients and their caregivers, and therefore caregivers can be empowered through additional training to improve these skills.

As reported in the Results, clinical staff responded with a 3 (“competent to perform with team consultation”) or 4 (“competent to perform independently) for more than 90% of survey questions in both clinical care and patient and family interactions. The survey response choice of 3, “competent to perform with team consultation,” was created for this pilot study to replace “competent to perform with minimal supervision,” because at Kimbilio Hospice, palliative care staff often make decisions collaboratively rather than independently with supervision. 23 Support staff and caregivers also had high rates of answering a 3 to 4 in domains I and II, with many caregivers selecting response 3 in both categories. However, a caregiver’s interpretation of the assessment and management of diarrhea with team consultation is most likely different from how a support staff or clinical staff would interpret that same team interaction, for example. This raises the question of whether palliative care self-competence should be evaluated based on independent skills versus on the successful collaboration and shared decision making of an interdisciplinary team. Even so, the clinical implications of high self-competence are encouraging, because health care providers who trust their professional competencies will act more competently, leading to higher performance, goals, and perseverance in challenging clinical scenarios. 18 In the rural setting of Kimbilio Hospice, staff perceptions of their competence are critical for decision making, quality of care, and patient outcomes. During night shifts for instance, when only 1 clinical staff works at the hospice at a time, self-competence is critically important for patient care.

Clinical and support staff had similar mean composite self-competence scores over all the variables in the patient and family interactions category. The support staff included both licensed and unlicensed staff, as well as clinical and nonclinical personnel. Interestingly, support staff had a higher rate of 45% in answering “not applicable to my role” in the clinical care category compared with 22% among caregivers, suggesting that support staff might have higher role clarity than caregivers. Another interpretation could be that because caregivers have the most frequent contact with patients compared with clinical and support staff, they may try to advocate for their patients by providing care outside their formal job descriptions. Regardless, because the clinical staff response rate was 100% in both domains, the trends in their responses are the most reliable and useful for the understanding of palliative care provider self-competence based on this pilot study.

Across all provider types, the similar mean composite self-competence survey response scores in patient and family interactions and clinical care (mean, 2.9 in both categories) suggest that the Kimbilio staff team as a whole has similar self-competence in both clinical and psychosocial aspects of patient care. It is within everyone’s scope of practice to communicate with patients and families, whether independently or as a team, which is a strength of the Kimbilio Hospice palliative care providers. Clinical staff felt highly competent in many areas, with mean scores greater than 3 for all variables except for inpatient hospice referral, the use of intravenous/injectable opioid analgesics, and the assessment of pain in the pediatric patient.

The entire sample of palliative care providers at Kimbilio Hospice was invited to participate in this study. The providers who had less than 1 year of palliative care experience had higher self-competence than did those with more experience across all provider types. One possible explanation for this is that 4 clinical staff members who have had formal training in palliative care reported less than 1 year in the field yet had higher self-competence in general than did care-givers, who had a median of 3 to 4 years working in palliative care ( Table 1 ). Self-competence in palliative care therefore could potentially be attributed to education and training rather than years of work experience. However, this phenomenon could also be influenced by hubris, making the case that validated indicators for true palliative care competence, along with self-competence, should be studied and described to ensure patient safety and outcomes. Providing high-quality, evidence-based palliative care to patients in an inpatient hospice setting requires a distinct set of skills and experiences compared with providing care at the bedside in a hospital setting. Effective methods of improving the competency of palliative care providers must be further investigated.

Pediatric pain assessment was a self-competence area in which all staff reported low competence, and pediatric palliative care was most frequently selected as a topic for future education and training. This finding was consistent with a previous study in which Ugandan health care providers identified communication with children as a top priority for palliative care education. 16 Based on competency training interventions in the United States, 24 educational programs designed to improve knowledge and skills have the potential to build self-competence among palliative care providers in rural hospice or palliative care settings in East Africa. Policymakers and directors of palliative care institutions must consider competency training to strengthen the quality of patient care and minimize moral distress among providers. Future education and training programs at Kimbilio Hospice and at hospices throughout Kenya must focus on pain management, pediatric palliative care, and spiritual care, based on the results of this study and others. 16

Limitations of this study include subject bias, particularly in section II, which assessed providers’ priorities for future education and training. Although the intentions of the study were made clear to the entire staff team and future education and training opportunities were not discussed or promised as a part of this project, participants may have responded to the questions based on expectations that the researchers would be able to fund future training at the hospice. Furthermore, many study participants answered “not applicable to my role” for 19% of the questions in section I, influencing the power of the statistical analysis and the generalizability of the results to the inpatient hospice staff. Given the nature of this small pilot study, however, it provides preliminary data to inform future studies. Although the results of the study are not generalizable beyond the setting of Kimbilio Hospice in Western Kenya, this study could be replicated by administering the survey at other hospices and palliative care services throughout Kenya and other sub-Saharan African countries. It could also be piloted in developed countries such as the United States as a comparison study to assess larger trends in palliative care provider competencies and training needs.

These results provide initial evidence that Kenyan palliative care providers and staff have varying levels of self-competence. Educational programs can be bolstered to build palliative care competencies and skills in clinical care and patient and family communication in Kenya. Continuing this research would be in line with the Declaration of Venice, which highlights the agenda for global palliative care research and education in developing countries by responding to the specific needs of patients within their geographical and socioeconomic and cultural contexts. 1

Acknowledgments

This work was part of R.S.’s master’s thesis at the University of California, San Francisco, and was supported by the Resource Allocation Program for Trainees (RAPTr) and the Kwan Fund.

The authors thank Chris Stewart, MD, Madhavi Dandu, MD, and Maggie Coffin along with Global Health Sciences and the UCSF Global Health Clinical Scholars for providing the structure, training, and support to conduct this global health research project; Mike Rabow, MD, BJ Miller, MD, and Pamela Malloy, PhD, RN, for contributing to the survey instrument adaptation and for editing this manuscript; and the LRI and Kimbilio Hospice providers and staff who supported and hosted this project in Chebaiywa, Kenya, including David Tarus, Rachel Ototo, Joel Sawe, and all the nurses, clinical officers, caregivers, social workers, physical therapists, the chaplain, and community health workers.

The authors have no conflicts of interest to disclose.

Contributor Information

Rebecca Sedillo, Family nurse practitioner, University of California, San Francisco.

Maria Mia Openshaw, Certified nurse midwife, Boston University, Massachusetts.

Janine Cataldo, Assistant professor of physiological nursing, University of California, San Francisco.

DorAnne Donesky, Associate adjunct professor of physiological nursing, University of California, San Francisco.

Juli McGowan Boit, International director, Living Room International, Redding, California.

Alison Tarus, Program development liason, Living Room International, Redding, California.

Lisa M. Thompson, Associate professor of family health care nursing, University of California, San Francisco.

• Open access
• Published: 17 November 2021

Future palliative competence needs – a qualitative study of physicians’ and registered nurses’ views

• Arja Suikkala   ORCID: orcid.org/0000-0001-5957-0479 1 ,
• Anniina Tohmola   ORCID: orcid.org/0000-0001-6463-0536 2 ,
• Eeva K. Rahko 3 &
• Minna Hökkä   ORCID: orcid.org/0000-0002-3343-4839 4  

BMC Medical Education volume  21 , Article number:  585 ( 2021 ) Cite this article

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Globally, the need for palliative care will increase as a result of the ageing of populations and the rising burden of cancer, non-communicable diseases as well as some communicable diseases. Physicians and registered nurses working in palliative care should have a sufficient level of education and competence in managing the changing needs and requirements of palliative care. There is, however, need for evidence-based palliative care training and education of physicians and registered nurses. The purpose of this study was to describe the views of physicians and registered nurses regarding future competence needs within palliative care.

The study was conducted through use of a cross-sectional qualitative design. A total of 54 physicians and 110 registered nurses completed an open-ended questionnaire about the future competence needs of palliative care. The data were analyzed using inductive content analysis.

The results revealed four main competence needs within palliative care for the coming decade: palliative care competence at all levels within healthcare and social welfare services; individualized palliative care competence; person-centered encounters competence; and systematic competence development within palliative care.

Conclusions

The results offer cues for education and professional development, which can be used to support physicians and registered nurses when future palliative care competences are included in educational programs. Seamless cooperation between palliative care services and educational institutions is recommended to ensure that undergraduate and postgraduate education is based on a continuous assessment of competence requirements within the field of palliative care. Therefore, online multi-professional simulations, for example, could be used to enhance future competencies within palliative care; undergraduate medical, nursing and allied healthcare students as well as postgraduate palliative care professionals and experts of experience could work together during simulations.

Peer Review reports

A central aim of palliative care is to provide high quality, seamless and affordable care to all patients and their significant others facing life-threatening diseases. Globally, approximately more than 56.8 million people require palliative care every year, but only 14% receive the proper care and support. Palliative care is increasingly provided in a wide range of social and healthcare settings for a growing number of palliative patients, ranging from mostly adults (67.1%) over 50 years old to children (7%) [ 1 ]. The COVID-19 pandemic has compounded the burden of suffering surrounding chronic diseases and thus highlighted the importance of palliative care competence among all healthcare professionals, especially when working among older people and people with preexisting risk factors to health [ 1 , 2 ].

Palliative care plays a pivotal role in integrated and people-centered health services. This means that physicians and registered nurses (RNs) should understand themselves and act as members of a multi-disciplinary team when confronted with palliative care situations across healthcare and social welfare services. Worldwide, there is, however, neither any harmony of the training needed for palliative care nor the establishment of specialty or subspecialty palliative care medicine [ 1 ]. Furthermore, disparities in palliative education have been found across and between regions of Europe in undergraduate and postgraduate nursing programs [ 3 ].

Competence is defined as the holistic cluster of knowledge, skills, attitudes and values needed when delivering care effectively in a specific contextual situation [ 4 , 5 , 6 ] and is thus related to the provision of quality care [ 7 ] and consequently to job-satisfaction. Competence can be developed and improved via education and systematic professional development via formal and informal lifelong learning across the whole professional career [ 8 , 9 , 10 ]. Core competences for healthcare professionals, including physicians and RNs, have been determined in earlier literature with an aim to enhance the palliative care of patients and ensure multi-professional and inter-organizational collaborative work in all palliative settings. These competences range from all healthcare and social welfare professionals being able to work with a palliative care approach to those with discipline specific competences required in complex and demanding palliative care situations. The focus of competences includes early identification and assessment of the needs of the patient with life-threatening illness, delivering appropriate care based on the individual needs of the patient and ensuring the quality of life, i.e. by responding to the physical, psychological, social and spiritual needs of patients, communicating and collaborating with the patient, significant others and the range of professionals involved. Core competences are also seen as the ability to deal with loss, grief and bereavement by supporting and providing information, to enhance ethically high quality and appropriate palliative care to patients and their significant others [ 10 , 11 , 12 ].

Physicians and RNs should have a sufficient competence level of basic, advanced or specialized care, depending on whether they have adopted a palliative care approach, or work in generalist or specialist palliative care settings [ 8 , 10 , 13 , 14 , 15 ]. In general, physicians and RNs should have competence in patient-centered care including the ethical and legal aspects related to patient advocacy [ 16 , 17 ], decision-making, and respect for the dignity and autonomy of palliative patients as persons with unique and wide-ranging needs, preferences, values and choices. Further, they need to have the competence to care and support an increasing number of patients with advancing chronic diseases in palliative care and their significant others [ 8 , 9 , 16 , 17 ] in a wide array of disease groups, ethnic groups and patients who are marginalized or disadvantaged [ 15 , 16 , 18 ]. Collaboration with the patients, their significant others and multi-professional team as well as clinical and technical competence involve both generalist and specialist palliative care depending on which level the physicians and RNs work [ 16 , 17 ]. In addition to the physicians’ abilities at the general level, those working at the specialized level of palliative care are supposed to have a strong competence in advanced symptom management, research and development competence, competence to offer consultative and educational support to other professionals and competence in providing a specialist level of psychosocial support [ 17 ]. Symptom management [ 10 , 16 , 19 ] providing holistic palliative care, and encountering and supporting the patient and their significant others [ 19 ] have been found to be the most important competences of RNs in both the basic and advanced levels of palliative care. In the advanced level, RNs’ competence in maintaining expertise and taking care of their own well-being at work has been underlined [ 10 , 19 ].

Communication and relationships between everyone involved in palliative care, i.e. between healthcare professionals, students and patients and their significant others have been seen as being at the core of quality in palliative care [ 8 , 9 , 16 , 19 , 15 , 20 ]. Competence regarding appropriate social interactions and multi-professional teamwork is emphasized as being important for both physicians and RNs [ 8 , 9 , 10 , 16 , 17 , 19 ]. Effective communication, dialogue, active listening [ 16 ], sensitivity and empathy [ 19 ], in particular, have been highlighted among RNs [ 16 ], whereas competence in networking, consultation and the coordination of care pathways are seen as important for physicians [ 7 ].

Evidence-based palliative care and competence-based continuous personal and professional development are of great importance. Performing research and developing palliative care are seen as important competences of physicians [ 17 ] and specialized RNs [ 19 ]. Among RNs, attention needs to be paid to competences related to economic issues, quality control in palliative care [ 16 ] and participation in policy making [ 19 ]. For both physicians and RNs, it is important to continuously take care of and extend evidence-based professional competence and to also provide educational support to colleagues and other professionals [ 16 , 17 , 19 , 21 ].

In the future, there will be an increasing need for palliative care professionals working in home- and community-based palliative care, which inflates the need for training in palliative care as well as multi-disciplinary collaboration competence with other professionals within and between palliative care levels [ 15 , 16 , 18 ]. There is, however, a dearth of evidence on future palliative competence needs regarding palliative care. The purpose of this study was to describe the views of physicians and RNs regarding future competence needs within palliative care.

The following research question was addressed:

What are the competence needs that will be required from physicians and RNs in palliative care during the next decade?

Ultimately, this study aims to contribute toward the continuous competence development of palliative care professionals and reinforce palliative care education in relation to future multi-disciplinary work.

Design, sample and data collection

This study was conducted in Finland using a cross-sectional qualitative design approach. The data were collected from a convenience sample of physicians and RNs by means of an electronic questionnaire sent via email between September and November 2018. The questionnaire had been developed by a multi-disciplinary team of palliative care experts including physicians ( n  = 2) with expertise in palliative medicine and a nurse researcher ( n  = 1) with expertise in developing undergraduate and special education in palliative care for nursing and medical students. The questionnaire was based on the EAPC recommendations of the palliative care content and future palliative care needs [ 14 , 22 ]. The questions in the questionnaire were reviewed by an expert panel of representatives from palliative care nursing ( n  = 4) and palliative medicine ( n  = 3). This study focuses on one open-ended question in the questionnaire: What changes do you think will occur in physicians’ and RNs’ competence needs in palliative care and end-of-life care during the next decade?

The delivery of the invitation letter and the questionnaire was sent via email to 149 physicians with special competence in palliative medicine. Two reminders to complete the questionnaire were also sent. The mailings were arranged by a contact person of palliative medicine. The email addresses of the physicians were received from the register of The Finnish Medical Association. The response rates of physicians for the whole survey were 43.6% ( n  = 65) and 36% ( n  = 54) for the open-ended question concerning future palliative care competence needs.

As there exists no register of palliative care RNs in Finland, the data collection started by informing the stakeholders of healthcare organizations about the questionnaire via email and asking them to forward the message. In addition, the questionnaire was put on the EduPal (Developing Palliative Nursing and Medical Education through Multidisciplinary Cooperation and Working-life Collaboration) -project’s website and a link to the website was shared on the project’s Facebook page as well. A total of 132 RNs responded to the questionnaire and 83.3% ( n  = 110) responded to the open-ended question concerning future palliative care competence needs.

Data analysis

Inductive content analysis was used to identify, code and categorize the data. The unit of analysis was a single word or meaning or a sentence that gave an answer to the research question. In the analysis, the researchers first read through the data to identify open codes which were further combined with other open codes referring to the similar content in order to form subcategories. Related subcategories were then combined to categories and main categories [ 23 ]. Two independent researchers conducted the analysis of each dataset (physicians’ and RNs’), reviewed each other’s analysis and, based on a joint assessment, placed the datasets together. The example presented in Table  1 illustrates the quotations, codes, subcategories, categories and main category.

Ethical considerations

This study was held to the principles of ethical research [ 24 , 25 ]. The permit to use email addresses from the special competency in palliative care register of physicians was obtained from The Finnish Medical Association. A covering letter attached to the front page of the questionnaire included information about the aim of the project and related questionnaire, voluntariness of the participation, what participation entails, anonymity and confidentiality. Both the physicians’ and RNs’ informed consent to participation was assumed by giving a response indicating that they had read the covering letter and agreed to participate by completing the online questionnaire.

Participant demographics

Altogether, 54 physicians and 110 RNs completed an open-ended question about the future competence needs of palliative care. The participants represented diverse fields of general and specialized levels of palliative care [ 8 , 10 ] covering public and private healthcare systems across Finland.

The mean age of the physicians was 51.3 years (range 34–69), most were women (92.6%) and all had qualified as a physician before the year 2010. Out of 54 physicians, 53 had special competence in palliative medicine and most also had specialist licenses in other fields of medicine. Out of 53 physicians, 51 worked within the field of palliative care, either in palliative care approach (18.4%), generalist palliative care (42.6%) or specialist palliative care (35.2%) (Table  2 ).

The mean age of the RNs was 44.9 years, most were women (95%) and over two-thirds (69.3%) had qualified as RNs before the year 2010. The RNs were working within the field of palliative care either in palliative care approach (44.5%), generalist palliative care (33.6%) or specialist palliative care (15.5%). More than half (57.1%) of the RNs had a specialized education (Table 2 ).

Future competence needs within palliative care

Four main competence needs were formed regarding palliative care for the coming decade. Considerations will at first be given to palliative care competence at all levels within healthcare and social welfare services, then to individualized palliative care competence, person-centered encounters competence, and systematic competence development within palliative care (Table  3 ).

Palliative care competence at all levels within healthcare and social welfare services

Physicians and RNs shared similar views on palliative care competence at all levels within healthcare and social welfare services with only a few exceptions. Palliative care competence at all levels within healthcare and social welfare services describes increased competence needs for palliative care across health settings from the basic level to the intensive tertiary level of services. The need for competence to provide quality in home-based palliative care and end-of-life care will increase in the future. Palliative care will be more common in patients’ homes and settings close to home, such as home nursing, long-term care, housing services, mobile and ambulatory care services and outpatient clinics.

“Basic skills are needed in nursing homes”. (MD 50.)

“Palliative care at home will increase. This increases the need for special competence.” (RN 3.)

Competence to work as a member of a multi-disciplinary team will be an important future need. Multi-professional collaboration, successful networking and consultations with other professionals to provide quality palliative care are increasingly seen as crucial in order to meet the physical, psychosocial and existential needs of palliative patients. Furthermore, physicians highlighted competence in dedicated palliative care services from the palliative care approach to the specialized level. The integration of palliative care consultation services with paramedics and acute care units was emphasized in order to ensure that the patients receive comprehensive care in their urgent healthcare needs. RNs, in turn, underlined the need for competence to provide care for the needs appearing in outpatient palliative care settings in the future.

“Treatment of existential crisis.” (MD 39.)

“Nurses will need more psychosocial support training.” (RN 50)

“The involvement of emergency care providers in outpatient care will reduce unnecessary transfers of patients from their homes to the hospital.” (RN 23.)

Individualized palliative care competence

Individualized palliative care competence was characterized as providing equal palliative care for all patient groups regardless of the time of day, home setting or geographical location. Competence in dedicated palliative care in both malign and non-malign conditions and different patient groups such as children, cancer patients, chronically ill patients or patients with a severe impairment of well-being, multimorbid patients or intoxicant abuse patients were seen to be increasingly needed in the future. In addition, more attention needs to be paid to a growing elderly population and the required competencies that are needed when caring for their palliative care needs.

“Patients with heart failure, chronic lung disease, and the elderly with multimorbidity are important groups of patients who also need quality palliative and hospice care.” (DR. 50).

“Equitable by providing the quality of care regardless of geographical location where patients live.” (RN 72.)

“The skills of doctors and nurses on a basic level need to be improved so that citizens receive equal services regardless of where they live.” (MD 11.)

Competence in patient- and family-centered palliative care is needed even more in the future, especially in responding to the individual needs of palliative care patients and their significant others. Increasing awareness of palliative care, patients’ rights as well as increased health literacy among patients and their significant others, demand special competences to coherently respond to the individual needs of patients in their palliative care pathways. Therefore, listening to the patients and engaging with them and their significant others were seen as being of great importance. Besides encountering death and dying, competence related to aspects and possible statutes related to euthanasia were also seen as future competences.

“The patient’s right to equal care is emphasized.” (MD 52.)

“Citizens’ awareness of treatment options is increasing and their demands are growing.” (RN 16.)

Individualized palliative care competence was described as competence in symptom-based care, not only the management of pain but also the side effects of therapies at all levels of palliative care. Novel pharmacologic and non-pharmacologic symptom management interventions and palliative sedation require continuous competence development. Furthermore, competence in advanced care planning and hospice care will include competence in the coordination of palliative care, e.g. right-time advance care planning and implementation. Problem-solving and decision-making were also highlighted as future competencies for RNs.

“Emerging symptomatic treatment techniques, e.g. pain management.” (MD 37.)

“Emphasis on end-of-life planning, individuality, consideration of wishes.” (RN44.)

More emphasis will be placed on using health information technology, mobile health, and smart healthcare technology designed for the home of palliative care patients. As such, the utilization of telemedicine and smartphone-based applications will be increasingly needed both in professional consultations and collaboration with patients.

“The use of electronic communication; e-consultations, better ways of networking.” (MD 57.)

“Artificial intelligence will provide solutions to a patient’s situation.” (RN 38.)

Physicians considered the increasing importance of competence when handling complex cases in the future. These concerned patients’ and significant other’s wishes for futile treatments as well as discussions about difficult topics, e.g. wishes to end life or other ethical issues. RNs, for their part, highlighted competence in respecting human dignity and self-determination in palliative care.

Competence in person-centered encounters

Competence in person-centered encounters was described in terms of respecting encounters with patients and their significant others anywhere in social welfare and healthcare services. Delivering psychosocial support to patients and their significant others was defined as ensuring the quality of life of patients and paying increasing attention to their psychosocial well-being due to the increase of loneliness and lack of social patient networks in the future. In addition, there is a need for competence in cultural and religious sensitivity in terms of international and multicultural contexts and therefore an increased need for religious literacy competence in any palliative care setting.

“The need to be able to deal with palliative and end-of-life care patients and patients’ relatives is emphasized.” (MD 21.)

“Multiculturalism and respect for different beliefs.” (RN 15.)

“The different cultures as well as needs and preferences of patients and their significant others to be taken even more into account.” (MD 35.)

Systematic competence development within palliative care

Both the physicians and RNs felt that systematic competence development within palliative care was a crucial factor. As such, the competence needs and requirements at all levels of palliative care will increase all the time. This requires competence in service design, decision-making and economics. Managing the changing needs and requirements of palliative care constantly determines the competence requirements and requires continuing competence assurance. This is due to evolving palliative medicine and care as well as recommendations and regulations guiding the needed expertise, which in turn raises the need for human resources and expertise within palliative care, especially at the basic level of palliative care but also within the private sector. At the same time, patients and their significant others will become ever more aware of care, can demand care, and want to hear about their care.

“Competence needs increase as the population is ageing.” (MD 5.)

“Self-directed learning and professional development will become an obvious matter.” (RN 39.)

“… recommendations and legislation may dictate issues related to education and professional development.” (RN 26.)

It is essential to adopt a comprehensive approach to competence development within palliative care through further and continuing education. Systematic further and continuing education that is satisfactory in quality and quantity will be needed at all levels of palliative care. There will be an increased need for specialized education in palliative care, but also training about the basic level of palliative care for all health professionals. RNs will need education on evidence-based palliative care. In medical training, there is a need to include clinical training at the specialized level of palliative care services. Furthermore, more attention needs to be paid to professionals’ well-being at work.

“Every professional must master the basic principles of caring for a dying patient (Level A care).” (MD 61.)

“In particular, training should be targeted at those working at level A care.” (RN 7.)

“Hopefully, the training will be systematic for both new nurses and doctors, plus those already in working life.” (RN 66.)

“Palliative care professionals need to take care of their well-being at work.” (MD 43.)

In this study, the following four competence needs of physicians and RNs regarding palliative care for the next decade were found: palliative care competence at all levels within healthcare and social welfare services; individualized palliative care competence; person-centered encounters competence; and systematic competence development in palliative care. Palliative competences for curriculum development and continued professional development described in earlier literature are still seen as relevant in the coming decade [ 8 , 9 , 10 , 16 , 17 , 19 , 26 ], albeit also some new competence demands emerged.

Besides physicians and RNs, all social welfare and healthcare professionals need to have sufficient palliative education and competence to provide a high quality of palliative care. Therefore, palliative care educational programs are needed for the basic, advanced or specialized palliative care training of the workforce in order to align with palliative care needs, enhance the quality of palliative care and to ensure appropriate access to palliative care for all [ 1 , 8 , 9 , 16 ]. In addition, the provision of high-quality palliative care necessitates competence development among those who work in the field of education, development and research [ 1 , 19 ].

Palliative care competence is increasingly needed in home-based and out-patient palliative care settings, thus the need for the clinical education and practice of healthcare professionals is expanded from hospital-based care to more include home- and community-based palliative care [ 27 ]. There is also a growing need for the education and support of carers with regard to providing palliative care for those patients who wish to remain at home [ 18 ]. Thus, competence in collaboration and shared decision-making with patients, their significant others, carers and the range of professionals involved in planning and providing tailored palliative care is of great importance [ 10 , 16 , 17 , 28 ].

Establishing palliative care competence in social and healthcare systems at all levels emphasizes leadership skills that enable seamless multi-disciplinary teamwork and inter-organizational collaboration within and between different levels of palliative care to ensure high quality care. More attention needs to be paid to competency-based, multi-professional palliative care education in order to ensure the amount and quality of professionals in general, but also with specialist palliative care competence, since clear roles, and effective and seamless multi-professional collaboration help in managing the challenges within palliative care [ 28 , 29 ]. Simulations in palliative care education have been found to be an effective way to enhance interprofessional collaboration and are recommended for learning symptom management skills [ 30 ]. Integration of 24/7 palliative care consultation services with acute care units will increase in the future. This raises the need for new multi-professional approaches for both education and practice that will secure smooth pathways for responding to the acute care needs of patients. Furthermore, the expertise of physicians, RNs and other healthcare professionals who work in acute care or specialized level care will be needed more in consultative and educational support for those working at the general level of palliative care [ 3 , 10 , 16 , 17 , 19 ].

Individualized palliative care competence with an emphasis on patient- and family-centered palliative care was found as a second future competence among physicians and RNs. Dedicated palliative care in both malign and non-malign conditions and different patient groups will set competence requirements for complex symptom management at the specialized level. At the same time, there is an increasing competence need for providing equal and tailored palliative care for different patient groups, especially, indigenous, marginalized or disadvantaged and non-cancer patients [ 18 ]. Advanced care planning and decision-making take place in order to emphasize patients’ preferences to be cared for either in a hospice, hospital or increasingly in their own homes [ 1 , 10 , 17 ]. At the same time, an individual care plan helps relatives to cope, paving the way to a better end of life [ 31 ]. Previous literature has indicated technical aspects as part of palliative nursing clinical competency [ 16 ]. According to physicians and RNs in this study, telemedicine, smartphone-based applications and related technologies will enable home-based care in the monitoring and care of patients in the future. In some European countries, digital technologies have already been used to provide guidelines on symptom management and facilitate virtual contacts between palliative patients and their families [ 2 ]. This necessitates that healthcare professionals should be able to apply, and also critically assess the significance and impact of the digital technologies in consultations and interactions between healthcare professionals and patients [ 32 ]. Despite the increasing use of telehealth in healthcare, including palliative patients and their significant others, there is, however, a dearth of evidence in telehealth education and training [ 33 ]. This raises the need for appropriate telehealth education and pedagogical approaches, such as multi-professional simulations, team-based games [ 34 ], multi-professional healthcare escape rooms [ 35 ] for current and future social welfare and healthcare professionals working within palliative care settings.

Competence in person-centered encounters emphasizes uniqueness of patients and mutuality in patient-provider relationships, thus placing the focus of attention on the person with sensitive needs instead of the tasks [ 36 , 37 ]. Emotionally intelligent person-centered encounter competence is needed to handle difficult thoughts and feelings with palliative patients and their significant others [ 16 , 17 ]. In healthcare education, attention needs to be paid to the knowledge, skills, attitudes and values needed in person-centered encounters and dialogical relationships concerning a wide range of physical, emotional, social, spiritual and existential needs [ 16 , 17 , 28 , 38 ]. The relievement of any existential and spiritual distress of patients as well as the grief and bereavement of significant others when facing loss, challenges professionals to improve their linguistic, cultural and religious literacy competence in a way that is sensitive and respectful to the individual patients and their significant others [ 39 ]. This raises the need for including a wide range of cultural as well as spiritual and religious issues in existing degree programs at all stages, as well as in continuing education courses. Competence in adequately dealing with complex situations, collaborating with other professionals and using the expertise of professionals with multi-cultural backgrounds in these situations are all of great importance [ 16 , 40 ]. Inter-Professional Training Wards have been shown to enhance competences related to interprofessional skills and person-centered approaches [ 41 ]. In the future, special attention needs to be paid to recognizing the voice of palliative patients and their significant others [ 18 ] in the development and assessment of person-centered palliative care competence.

The changing palliative care needs and requirements necessitates the systematic development of competence and assurance in the field of palliative care. Healthcare professionals are obliged by Finnish law to maintain and develop their competence required for professional activities [ 42 ]. Continuous learning can occur formally, non-formally or informally [ 43 ] and education should be provided on different levels. This challenges educational institutions to provide further and continuing education aimed toward updating and renewing the competence and expertise of professionals working within palliative care. As palliative care competence is crucial for physicians and RNs worldwide, comprehensive, competency-based education will be needed to prepare them for practice with palliative patients and their significant others [ 3 , 28 ]. In Finland, for example, new national curriculum recommendations for the education of physicians [ 44 ] and RNs [ 45 ] will harmonize the content of palliative education, highlighting what education should include.

Strengths and limitations

This study had limitations related to the sample of physicians and RNs. All the physicians involved, except for one, had special competence in palliative medicine granted by The Finnish Medical Association. By comparison, only some of the RNs had a formal education in palliative care since there was no systematic education available. Therefore, both professionals have responded to the questionnaire based on their self-assessed expertise within palliative care. There may be a limitation of access to informants, and data collection via email might not have reached all 149 invited to the study. The sample of RNs consisted only of those respondents who had visited the website and answered the questionnaire, so this cannot be considered to be a completely comprehensive sample of palliative care physicians and RNs. There were twice as many RNs as physicians as informants, so one might think that the relationship is disproportionate. However, in practice, the number of palliative care physicians can be in a ratio of 1: 4 to the number of RNs [ 46 ]. The feedback from the physicians and RNs involved could have been used to ensure the creditability of the study, but this was not achievable.

There is already a current need to pay attention to future competencies within palliative care, so that the palliative care competence of medical and nursing staff is accurate within all levels of healthcare and social welfare services in the next decade. Systematic and continuous competence development in all stages of palliative care is of great importance to ensure the quality of palliative care. This was the first study of the future palliative competence needs of physicians and RNs. Some of the competence needs have already been identified and some were new. More research is needed about future palliative care competencies, particularly the competencies required to provide palliative care for children and patients belonging to ethnic, linguistic, cultural and religious minorities. Providing increasing numbers of palliative patients with equitable access to quality palliative care will determine the competence and specific training needs of all social and healthcare professionals. In order to achieve the required competencies at all levels of palliative care, it would be advisable to incorporate the already established future palliative care competencies to education today.

Availability of data and materials

The data that support the findings of this study are available from the EduPal Project Manager but restrictions apply to the availability of these data, which were used under license for the current study, and so are not publicly available. Data are however available from the EduPal Project Manager upon reasonable request.

Abbreviations

Developing Palliative Nursing and Medical Education through Multidisciplinary Cooperation and Working-life Collaboration

Doctor of Medicine

Registered Nurse

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Acknowledgments

The authors wish to thank all the physicians and registered nurses who participated in this study. The authors also thank Paul Wilkinson for editing the English language.

This research was part of the project titled Developing Palliative Nursing and Medical Education through Multi-disciplinary Cooperation and Working Life Collaboration, funded by the Finnish Ministry of Education and Culture (Decision 29.3.2018 OKM/258/523/2017). The content of this article reflects the views of the project group members. The project funder had no role in designing the study or writing the article and is not liable for any use that may be made of the information contained herein.

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Suikkala, A., Tohmola, A., Rahko, E.K. et al. Future palliative competence needs – a qualitative study of physicians’ and registered nurses’ views. BMC Med Educ 21 , 585 (2021). https://doi.org/10.1186/s12909-021-02949-5

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Published on 8.4.2024 in Vol 12 (2024)

Effects of Telemedicine on Informal Caregivers of Patients in Palliative Care: Systematic Review and Meta-Analysis

Authors of this article:

• Xiaoyu Yang 1 , BSN ; 
• Xueting Li 2 , BSN ; 
• Shanshan Jiang 2 , BSN ; 
• Xinying Yu 3 , MSN

1 Department of Oncology, Shengjing Hospital of China Medical University, , Shenyang, , China

2 College of Nursing, China Medical University, , Shenyang, , China

3 Department of Pediatrics, Shengjing Hospital of China Medical University, , Shenyang, , China

Corresponding Author:

Xinying Yu, MSN

Background: Telemedicine technology is a rapidly developing field that shows immense potential for improving medical services. In palliative care, informal caregivers assume the primary responsibility in patient care and often face challenges such as increased physical and mental stress and declining health. In such cases, telemedicine interventions can provide support and improve their health outcomes. However, research findings regarding the use of telemedicine among informal caregivers are controversial, and the efficacy of telemedicine remains unclear.

Objective: This study aimed to evaluate the impacts of telemedicine on the burden, anxiety, depression, and quality of life of informal caregivers of patients in palliative care.

Methods: A systematic literature search was conducted using the PubMed, Embase, Web of Science, CENTRAL, PsycINFO, CINAHL Plus with Full Text, CBM, CNKI, WanFang, and VIP databases to identify relevant randomized controlled trials published from inception to March 2023. Two authors independently screened the studies and extracted the relevant information. The methodological quality of the included studies was assessed using the Cochrane risk-of-bias tool. Intervention effects were estimated and sensitivity analysis was conducted using Review Manager 5.4, whereas 95% prediction intervals (PIs) were calculated using R (version 4.3.2) and RStudio.

Results: A total of 9 randomized controlled trials were included in this study. The meta-analysis indicated that telemedicine has reduced the caregiving burden (standardized mean differences [SMD] −0.49, 95% CI −0.72 to −0.27; P <.001; 95% PI −0.86 to −0.13) and anxiety (SMD −0.23, 95% CI −0.40 to −0.06; P =.009; 95% PI −0.98 to 0.39) of informal caregivers; however, it did not affect depression (SMD −0.21, 95% CI −0.47 to 0.05; P =.11; 95% PI −0.94 to 0.51) or quality of life (SMD 0.35, 95% CI −0.20 to 0.89; P =.21; 95% PI −2.15 to 2.85).

Conclusions: Although telemedicine can alleviate the caregiving burden and anxiety of informal caregivers, it does not significantly reduce depression or improve their quality of life. Further high-quality, large-sample studies are needed to validate the effects of telemedicine. Furthermore, personalized intervention programs based on theoretical foundations are required to support caregivers.

Trial Registration: PROSPERO CRD42023415688; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=415688

Introduction

With the continued increase in the number of individuals with multiple and severe diseases, the global demand for palliative care services is also growing [ 1 ]. Given that most patients who require palliative care prefer to spend time at home and receive the necessary care [ 2 - 4 ], informal caregivers play a crucial role in caring for patients. However, the cumbersome and complex care tasks may have negative impacts on their physical, psychological, and social well-being [ 5 - 7 ]. In recent years, telemedicine, as an emerging technology, has been increasingly used in home care [ 2 ], benefiting informal caregivers [ 8 , 9 ]. It may serve as a pathway to support informal caregivers of patients in palliative care, improve their health outcomes, and thus enhance the quality of palliative care [ 10 ].

The World Health Organization estimates that 56.8 million people require palliative care yearly [ 11 ]. However, there is a prevailing shortage of professional palliative care personnel, and the majority of patients prefer to receive such care at home [ 2 - 4 ]. Hence, informal caregivers, usually family members or friends, assume the primary responsibility for patient care. In doing so, they adapt to changes in their role, family, and social life to provide long-term, unpaid care for patients [ 12 , 13 ]. Informal caregivers frequently lack professional training [ 4 ]. Thus, they face unmet supportive care needs, such as symptom management, psychological counseling, and social support [ 4 , 13 ], and experience anxiety, depression, physical overload, and a decline in the quality of life (QOL) [ 5 - 7 ]. Studies reveal that the state of informal caregivers and the condition of the patients mutually affect each other. The quality of care provided by caregivers in poor condition can be diminished, exacerbating the patient’s condition. In turn, the patient’s worsening condition can negatively affect informal caregivers [ 7 , 14 , 15 ]. Therefore, the demand to assist informal caregivers and address their physiological, psychological, and social health needs is urgent.

With the development of the information age, telemedicine has demonstrated tremendous potential in providing health care. Telemedicine refers to the use of information and communication technologies to facilitate communication between patients and health care workers for the assessment, diagnosis, treatment, and prevention of diseases, thereby improving patient health [ 16 ]. As a personalized medical approach, telemedicine overcomes the conventional care constraints of time and space; facilitates remote treatment, supervision, education, and care services; and promotes the rational distribution and refinement of medical resources [ 17 ]. Telemedicine has been widely applied in medical fields such as diabetes, chronic wounds, and cardiovascular diseases [ 18 , 19 ], benefiting patients and improving the health outcomes of informal caregivers [ 8 , 9 ].

In recent years, telemedicine has also provided novel ideas to guide palliative care [ 20 ]. In the field of palliative care, an increasing number of informal caregivers are opting to provide home care for patients who require palliative care [ 21 ]. Telemedicine facilitates real-time communication between professionals and family caregivers. This promotes information sharing; assists in the patient’s symptom management; and helps in providing health education, psychological counseling, and social support [ 22 ]. However, the outcomes of using telemedicine with informal caregivers are controversial. For example, a randomized controlled trial (RCT) by Chen et al [ 23 ] indicated that telemedicine could alleviate caregiving burden and enhance the QOL of informal caregivers. However, Dionne-Odom et al [ 24 ] found no significant difference between the telemedicine and control groups in terms of improvements in informal caregivers’ QOL, burden, or emotional state. Of the few available systematic reviews, most provide a descriptive summary of results without performing a meta-analysis to quantify the outcomes of the studies [ 25 - 27 ]. Thus, the intervention effects of telemedicine remain unclear.

Given the limitations of previous reviews, we conducted a systematic review and meta-analysis. We summarized articles on the intervention effects of telemedicine among the informal caregivers of patients in palliative care, focusing on 4 health outcomes: caregiver burden, anxiety, depression, and QOL. This provides a reference for the clinical practice of telemedicine. This is the first systematic review and meta-analysis to verify the effects of telemedicine on the outcomes for informal caregivers of patients in palliative care.

This systematic review adhered to the guidelines in the 2020 PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) checklist [ 28 ] ( Checklist 1 ). In addition, it was registered on PROSPERO (CRD42023415688).

Ethical Considerations

As all data used were obtained from previously published articles, this research did not require ethical approval from an institutional review board or informed consent from participants.

Search Strategy

A literature search was conducted in 10 electronic databases (PubMed, Embase, Web of Science, CENTRAL, PsycINFO, CINAHL Plus with Full Text, CBM, CNKI, WanFang, and VIP) for publications dating from the establishment of each database until March 31, 2023. Following the Population, Intervention, Comparison, Outcome, and Study design principles, the searches in this systematic review were performed using Medical Subject Headings, the title or abstract, and keywords, as well as Boolean logical operations. Multimedia Appendix 1 describes the search strategy for all databases. In addition, relevant systematic reviews and references were manually screened to identify additional eligible studies.

Study Eligibility Criteria

The inclusion criteria were as follows. (1) The study population was informal adult caregivers (aged ≥18 y) caring for patients receiving palliative care for severe diseases (eg, advanced stage, incurable “stage 4” diseases). (2) Intervention measures were being provided through the internet, applications, telephone, video, or other telemedicine technologies. (3) The control group received usual care or enhanced usual care or was on a waiting list. (4) The study reported outcomes for informal caregivers focusing on 1 or more of the following aspects: caregiver burden, anxiety, depression, or QOL. (5) The study was designed as an RCT. (6) The article was published in English or Chinese.

The exclusion criteria were as follows. (1) The publications were qualitative research, conference abstracts, letters, comments, reviews, or protocols. (2) Patients were underage (aged <18 y), or palliative care indications were unrelated to life-limiting diseases (eg, chronic diseases or nonmalignant pain). (3) Interventions were not being targeted at informal caregivers. (4) The full-text article or relevant data were not accessible.

Study Selection and Data Extraction

The titles and abstracts of the retrieved literature were first downloaded and imported into Endnote X9 (Clarivate; a reference management program) to remove duplicates. Two evaluators then independently screened the studies based on the inclusion and exclusion criteria. Any disagreements were resolved through consultation or discussion with a third researcher. Data were extracted through a predesigned table, including the name of the first author, year of publication, country, age of the caregiver, sample size, type of disease diagnosed in the patient, type and content of intervention measures, study duration, and time of the outcome assessment.

Quality Assessment

Two evaluators independently assessed the methodological quality of the included studies using the Cochrane Collaboration’s tool for assessing the risk of bias [ 29 ]. Seven aspects were evaluated: (1) random sequence generation, (2) allocation concealment, (3) blinding of participants and personnel, (4) blinding of outcome assessment, (5) incomplete outcome data, (6) selective reporting, and (7) other biases. Each study was categorized as “low risk,” “uncertain risk,” or “high risk,” with disagreements resolved through consultation or discussion with a third researcher.

Data Analysis

For studies with multiple measurements, only data from the last measurement were extracted for analysis. SDs were calculated according to the Cochrane Handbook for Systematic Reviews of Interventions if not reported [ 29 ]. If required data were not reported, we contacted the first authors of the relevant publication. Heterogeneity testing and the meta-analysis were conducted using Review Manager 5.4 (The Cochrane Collaboration). Intervention effects were estimated through standardized mean differences (SMDs) and 95% CIs, and forest plots were generated. A 2-sided P value <.05 was considered statistically significant. Heterogeneity was evaluated using the χ 2 test (with P <.10 indicating heterogeneity) and I 2 test (with I 2 >50% indicating moderate heterogeneity and I 2 >75% indicating high heterogeneity). If I 2 ≤50% and P >.10, a fixed-effect model was adopted for data merging and analysis; otherwise, a random-effects model was used. A sensitivity analysis was conducted using a one-study-out method to evaluate the robustness of the combined results. In addition, 95% prediction intervals (PIs) were calculated using R (version 4.3.2; R Foundation for Statistical Computing) and RStudio (Posit) to explain the heterogeneity across studies and estimate the true effects in similar future studies [ 30 ].

Search Results and Selection

A preliminary search of the electronic databases yielded 5456 articles: 254 in Chinese and 5202 in English. After removing 1733 duplicated articles, an additional 3669 unrelated articles were excluded after evaluating their titles and abstracts, leaving 54 articles for the full-text review. From these, 8 articles were included, and with the addition of 1 more article, 9 studies were ultimately included in the meta-analysis. The screening process is detailed in Figure 1 [ 28 ].

Characteristics of the Included Studies

Study characteristics.

Multimedia Appendix 2 [ 23 , 24 , 31 - 37 ] summarizes the main characteristics of the included studies. These studies were all RCTs published in 3 countries between 2015 and 2023: a total of 6 from the United States, 1 from the Netherlands, and 2 from China. Four studies mentioned the theoretical or conceptual framework of the intervention, including Erikson’s psychosocial development theory and Bowen’s family system theory [ 23 ], self-determination theory [ 31 ], shared decision-making [ 33 ], and cognitive behavioral stress management [ 35 ].

Characteristics of Informal Caregivers

The studies involved 1215 informal caregivers, with the number of participants in each study ranging from 35 to 334. The average age of the informal caregivers ranged from 45.71 (SD 11.85) to 60.1 (SD 12.5) years, and they were predominantly patients’ parents, spouses or partners, and children. The types of diseases of the patient included advanced cancer, advanced heart failure, and advanced dementia.

Characteristics of Telemedicine Interventions

Telemedicine was practiced via websites, web conferences, applications, or the telephone, but primarily through websites and the telephone. A total of 4 studies provided interventions through a website. Oliver et al [ 33 ] performed a 3-arm clinical trial, where 1 group received an intervention via Facebook, which offered education and social support to informal caregivers, whereas a separate group received the ACCESS intervention. Here, in addition to the Facebook-based intervention, web conferences were incorporated to facilitate the engagement of informal caregivers in joint decision-making in palliative care. The project aimed to alleviate informal family caregivers’ anxiety and depression. Pensak et al [ 35 ] implemented a 12-week intervention named Pep-Pal, which provided stress management support to informal caregivers of patients with advanced cancer via a website. The intervention program of Parker Oliver et al [ 34 ], ACTIVE, used web conferences or telephone calls to link informal caregivers to end-of-life care teams to improve caregivers’ perceptions of pain management. Similarly, Fu et al [ 37 ] established real-time communication between medical staff and family caregivers of patients with advanced cancer via an internet platform to provide relevant health guidance. Furthermore, 2 studies provided intervention through an application. Schuit et al [ 36 ] developed a program called Oncokompas to provide personalized information, suggestions, and supportive care solutions tailored to the caregiver’s situation. Chen et al [ 23 ] created a dyadic life review program for patients with advanced cancer and their caregivers using WeChat software to promote their QOL. In addition, 3 studies offered interventions via the telephone. Dionne-Odom et al [ 24 ] implemented a telephone intervention program named ENABLE CHF-PC, which offered psychological and problem-solving support for patients with heart failure in palliative care and their caregivers to improve their emotions, burden, and QOL. Two years later, Dionne-Odom et al [ 32 ] performed a similar intervention for patients with advanced cancer and their caregivers. Finally, Badr et al [ 31 ] provided a telephonic psychosocial intervention to enhance the QOL of patients with advanced cancer and their caregivers.

Characteristics of Controls

The control group in 1 study received enhanced usual care [ 33 ], whereas those in the remaining studies received usual care. Furthermore, in the study by Schuit et al [ 36 ], informal caregivers in the control group were allowed to use telemedicine equipment after the research ended.

Risk of Bias

A quality assessment of the included studies was conducted using the Cochrane risk-of-bias tool. Although most studies (6/9, 67%) reported using randomization, some did not detail allocation concealment, potentially leading to selection bias. Only 2 studies were determined as having a low risk of implementation bias owing to the challenge of blinding researchers and participants in telemedicine intervention trials [ 24 , 32 ]. Approximately half (4/9, 45%) the studies blinded the outcome assessors, and thus, their risk of measurement bias was classified as low. Three studies were determined to have a high risk of attrition bias due to elevated loss to follow-up rates or a lack of appropriate data processing methods [ 32 , 35 , 37 ]. However, no selective reporting bias was detected in the included studies. Four studies were categorized as having a high risk of other biases due to baseline differences [ 24 , 34 ] and small sample sizes [ 31 , 32 ]. The results are shown in Figure 2 .

Meta-Analysis

Caregiver burden.

A total of 5 studies that evaluated caregiver burden were included in the meta-analysis [ 23 , 31 , 35 - 37 ]. Since no significant heterogeneity was observed among the included studies ( I 2 =0%; P =.64), a fixed-effect model was used for merging the data. The results revealed that telemedicine intervention could mitigate the burden on informal caregivers (SMD −0.49, 95% CI −0.72 to −0.27; P <.001; 95% PI −0.86 to −0.13), as shown in Figure 3A . The sensitivity analysis showed that the results were stable, as shown in Figure 4A . The results remained unchanged when studies were merged using a random-effects model.

A total of 5 studies assessed the anxiety level of informal caregivers [ 24 , 31 , 32 , 34 , 35 ]. Due to mild heterogeneity among the included studies ( I 2 =43%; P =.14), a fixed-effect model was adopted to pool the data for analysis. The results demonstrated that telemedicine intervention could reduce informal caregivers’ level of anxiety (SMD −0.23, 95% CI −0.40 to −0.06; P =.009; 95% PI −0.98 to 0.39), as shown in Figure 3B . The sensitivity analysis showed that after excluding Badr et al [ 31 ], the pooled results were the opposite, with I 2 decreasing to 0%, as shown in Figure 4B . This could be attributed to a higher risk of bias in this study. However, when merging studies using a random-effects model, the results still retained statistical significance (SMD −0.30, 95% CI −0.57 to −0.03; P =.03).

A total of 5 studies assessed the depression level of informal caregivers [ 24 , 31 - 33 , 35 ]. In the study by Oliver et al [ 33 ], “a” represents the ACCESS intervention and “b” represents the Facebook intervention. Due to moderate heterogeneity among the included studies ( I 2 =51%; P =.07), a random-effects model was used for merging the data. The analysis indicated that the telemedicine intervention did not result in a statistically significant difference in reducing depression among informal caregivers (SMD −0.21, 95% CI −0.47 to 0.05; P =.11; 95% PI −0.94 to 0.51), as shown in Figure 3C . Furthermore, the sensitivity analysis showed that no individual trial could change the results. However, after excluding Badr et al [ 31 ], the I 2 decreased to 0%, as shown in Figure 4C .

QOL of Caregivers

A total of 4 studies that assessed QOL were included in the meta-analysis [ 23 , 24 , 32 , 36 ]. Due to moderate heterogeneity among the studies ( I 2 =73%; P =.01), a random-effects model was used. The results indicated that the telemedicine intervention did not result in a statistically significant difference in improving the overall QOL of informal caregivers (SMD 0.35, 95% CI −0.20 to 0.89; P =.21; 95% PI −2.15 to 2.85), as shown in Figure 3D . Furthermore, the sensitivity analysis indicated that no individual trial could change the results. However, after excluding Chen et al [ 23 ], the I 2 decreased to 0%, as shown in Figure 4D .

Principal Findings

The results of this review indicate that compared to conventional care, telemedicine interventions can alleviate the caregiving burden and anxiety of informal caregivers; however, they do not significantly alleviate depression or improve their QOL. The 95% PIs indicate considerable heterogeneity among the studies, and the effects of future telemedicine interventions on these outcomes remain uncertain, except for reducing caregiver burden.

The results of the study demonstrated that telemedicine interventions could relieve the caregiving burden of informal caregivers, which is consistent with previous research [ 9 , 12 , 31 ]. The systematic review by Hu et al [ 9 ] demonstrates that internet-based interventions can effectively alleviate the stress of informal caregivers of patients with chronic diseases and improve their well-being. Chih et al [ 38 ] developed the Comprehensive Health Enhancement Support System for informal caregivers of patients with advanced cancer. The tool reduced the negative emotions of family caregivers and subsequently decreased their caregiving burden. Caregiver burden consists of both subjective and objective levels. Subjective burden includes the perceived physical, emotional, social, and economic difficulties caused by caring for individuals with serious diseases, whereas objective burden refers to the time and number of tasks devoted to patient care [ 39 ]. Telemedicine facilitates health education, assists in decision-making, helps develop problem-solving skills, and provides social support. It also improves and conserves the resources and time of informal caregivers. Thus, it is conducive to alleviating the caregiving burden at both the subjective and objective levels.

The results revealed that telemedicine interventions can alleviate anxiety in informal caregivers, which is consistent with the findings of previous research [ 8 , 27 ]. Research indicates that the likelihood of anxiety occurring in caregivers of patients with advanced cancer is 3 times that of the general population [ 40 ]. Here, factors such as overwhelming nursing pressure, inadequate self-care, and the lack of supportive care can lead to anxiety [ 41 , 42 ]. Currently, the proposed interventions to reduce the anxiety of informal caregivers focus on psychological education, skill training, and treatment counseling [ 43 ]. In this case, telemedicine enables monitoring, assessing, and managing patient symptoms, which can enhance informal caregivers’ symptom management skills [ 1 , 37 ]. Moreover, it allows them to join discussions on the disease and participate in clinical decisions [ 20 , 33 , 44 ]. This can help satisfy informal caregivers’ information needs and enhance their caregiving confidence and ability. In addition, telemedicine can provide psychological interventions, improve interpersonal relationships, and offer training in stress management skills [ 31 , 32 ], thereby alleviating symptoms of anxiety. However, the sensitivity analysis indicated that the result was unstable. To ensure greater stability, it will be necessary to gather additional data for further investigation.

The results of our research indicate that telemedicine does not have a statistically significant effect on alleviating depression among caregivers, which is consistent with the findings of previous research [ 45 ]. In addition to influencing factors such as the high nursing stress and insufficient social support observed for anxiety, an increased economic burden may also contribute to the onset of depression [ 42 , 46 ]. Despite its potential advantages, telemedicine requires a stable internet connection and available electronic devices. The initial investment cost of such equipment may negatively affect informal caregivers [ 47 ]. Furthermore, researchers only offered counseling on disease knowledge and mental and emotional well-being, but not economic and welfare support. Subsequently, factors including a lower baseline depression level in the study population [ 24 ], small sample size, and significant differences in intervention measures in various studies may negatively impact the combined results. These findings differ from those of Northouse et al [ 48 ], possibly due to variations in the target population. The study by Northouse et al [ 48 ] focused on informal caregivers of patients with cancer. In contrast, our research noted higher loss to follow-up rates in the population with advanced diseases, potentially impeding the discovery of beneficial outcomes. Moreover, Northouse et al [ 48 ] conducted a self-controlled study, whereas we included RCTs in which conventional palliative care can alleviate depression in informal caregivers [ 46 ]. Consequently, the extent to which telemedicine can improve depression is limited.

Quality of Life

This study found that telemedicine does not significantly improve the QOL of informal caregivers of patients in palliative care, which is consistent with the findings of earlier research [ 25 , 49 ]. Most informal caregivers consistently place the needs of patients above their own [ 50 ], leading to various unmet supportive care needs, such as physical, psychological, and social needs [ 6 , 51 ], and a subsequent decline in QOL. As QOL is a multidimensional construct, a multidisciplinary intervention is often more effective than single-faceted approaches. However, the majority of studies (3/4, 75%) in this review targeted interventions at the social-psychological level, and the results might not be ideal. Furthermore, the small sample sizes in the included studies and variations in intervention measures may have limited the possibility of revealing meaningful results. Finally, the effectiveness of intervention measures may further be moderated by other factors such as the characteristics of informal caregivers, preexisting mental health issues, and the caregiver-patient relationship. Therefore, future efforts should aim to devise personalized interventions for specific informal caregiver populations to ensure the best possible support.

Strengths and Limitations

This study meticulously adhered to the systematic review writing process, developed a comprehensive search strategy, and selected appropriate methods for meta-analysis. To enhance the reliability of the results, only RCT studies were included. However, this review also had limitations. First, we only included available data for the analysis. Missing data may impact the combined results of the meta-analysis. Second, some included studies, especially pilot studies, have small sample sizes, which requires a cautious approach to generalizing the results. Third, the inclusion of only English- and Chinese-language articles may lead to publication bias. Last, the included studies all measured the results immediately after intervention, without evaluating the persistence of the intervention effect. Therefore, in the future, large samples and high-quality research are required to further validate the intervention effects of telemedicine and explore the most suitable intervention duration for informal caregivers.

Implications for Practice and Future Research

The findings indicated that telemedicine interventions have beneficial effects on the informal caregivers of patients in palliative care. We recommend that professional palliative care personnel consider the needs of informal caregivers, incorporating telemedicine into care plans to optimize and complement existing health care measures. When implementing such interventions, several considerations arise. First, the needs of informal caregivers are diverse and require multidisciplinary team collaboration. Second, personalized interventions should be tailored based on the demographic characteristics of informal caregivers. Finally, cost-effectiveness should be considered. In this regard, we suggest that relevant organizations establish regulations to minimize health care costs as much as possible.

Moreover, a theoretical or conceptual framework can provide the foundation of interventions, drive their development, and facilitate the prediction and explanation of their mechanism to achieve the desired effect [ 22 ]. For example, in the included studies, Badr et al [ 31 ] conducted a study based on self-determination theory. The authors hypothesized that telephone-based psychosocial interventions could improve the mental state and burden of patients and informal caregivers. Those results were statistically significant. The study by Pensak et al [ 35 ] was based on cognitive behavioral stress management theory and provided stress management training to alleviate informal caregivers’ burden. In contrast, studies lacking theoretical support failed to improve patient and informal caregiver outcomes. Therefore, it is recommended that researchers have a relevant theoretical foundation when devising intervention measures to enhance the intervention effect, which will be more likely to benefit informal caregivers.

In summary, telemedicine can alleviate caregiving burden and anxiety in informal caregivers but does not significantly impact their depression and QOL. Despite certain outcomes lacking statistical significance, they retain clinical relevance for those engaged in family palliative care. We believe that support provided through telemedicine represents a viable means to ensure the continuity of care, address the needs of informal caregivers, and foster favorable outcomes. Future studies that involve large samples and high-quality research are still required to further validate the effects of telemedicine. Furthermore, intervention measures should be designed with a solid theoretical basis to the fullest extent.

Acknowledgments

This study was supported by the scientific research project of the Chinese Nursing Association (ZHKY202101). The funder had no role in the study design, data extraction process, data analysis, results interpretation, or manuscript preparation.

Authors' Contributions

X Yang and X Yu were responsible for the topic and design of this review. X Yu obtained funding, and X Yang drafted the manuscript. X Yang, XL, and SJ performed the study selection and data extraction. X Yu supervised the project. All authors were responsible for the analysis and interpretation. All authors reviewed and approved the final manuscript.

Conflicts of Interest

None declared.

Search strategy.

Characteristics of the included studies.

PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) checklist.

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Abbreviations

Edited by Lorraine Buis; submitted 03.11.23; peer-reviewed by Carlos Laranjeira, Shumenghui Zhai; final revised version received 28.02.24; accepted 28.02.24; published 08.04.24.

© Xiaoyu Yang, Xueting Li, Shanshan Jiang, Xinying Yu. Originally published in JMIR mHealth and uHealth (https://mhealth.jmir.org), 8.4.2024.

This is an open-access article distributed under the terms of the Creative Commons Attribution License ( https://creativecommons.org/licenses/by/4.0/ ), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR mHealth and uHealth, is properly cited. The complete bibliographic information, a link to the original publication on https://mhealth.jmir.org/ , as well as this copyright and license information must be included.

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Institute for Palliative and End of Life Care

Improved understanding and utilization of palliative care will foster optimum quality of life – physical, psychosocial and spiritual - in the presence of serious illness and the final stages of life.

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Marquette College of Nursing’s Institute for Palliative and End of Life Care (IPEOLC) aims to change the status of palliative, serious illness, and end-of-life care and education.

The IPEOLC contributes to improvements in palliative and serious illness care through its education, research, clinical, interprofessional, and community activities. In accordance with the Jesuit educational principle, "Care for the Whole Person," the IPEOLC educates students, clinicians from multiple disciplines and the public about palliative care. It promotes research and quality initiatives and serves as a resource for information with the aim of further improving this vital area of care.

Palliative Care and Hospice

Palliative care is specialized care for individuals with serious illness that aims to relieve pain, stress, and other symptoms of the illness to improve quality of life for an individual and their family. Palliative care an extra layer of support provided best by a health care team of doctors, nurses, and other specialists who focus on the individual’s health care needs as well as their wishes and goals. Palliative care can be provided in many health care settings. It is appropriate for a person at any age or any stage in a serious illness, and can be provided along with curative-focused treatment.

Hospice care is care provided by an interdisciplinary team of doctors, nurses and other team members (including chaplain, volunteer, and bereavement services) for individuals with advanced, serious, terminal illness whose goals are for supportive care.  Its focus is on quality of life of the individual and their family. It addresses the individual’s physical, psychosocial, and spiritual needs. Hospice care can be provided in a variety of settings.

History of Marquette IPEOLC/Aurora Visiting Nurses Association

In 2003, Marquette College of Nursing Institute for End-of-Life Care Education and the Aurora Visiting Nurses Association (part of Aurora Health Care in Milwaukee) formed a unique partnership to advance the quality of end-of-life care, working together to forge new initiatives in care, education and services. In 2012, it was renamed the Institute for Palliative and End of Life Care (IPEOLC).

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