There is increasing attention on implementing new interventions and programs to improve palliative care in residential aged care facilities (RACFs). There is, however, no standard approach to evaluating the implementation of these programs. This scoping review aims to identify and map the outcomes that have been reported as measures of the effectiveness and acceptability of palliative care programs and interventions in RACFs.
Palliative care provides support for people facing life-threatening illness at all stages of disease, and is not limited to comfort care or end-of-life care.1 As the end of life approaches, the role of palliative care intensifies to manage aggressive symptoms, such as pain, and provide other physical, psychosocial, and spiritual support.1 Contemporary palliative care originated from interventions designed to improve quality of life during the terminal stages of cancer.2 As the population ages, it has become an international challenge to establish new palliative care models to meet people's needs.3 Providing palliative care in RACFs can be carried out through delivery of single actions (ie, interventions) or through the formal integration of a series of activities/interventions (ie, programs).4 Studies of different interventions and programs have identified some successful outcomes in providing palliative care for older people with complex chronic illnesses in their final stages of life living in RACFs.5 However, there is no standard evaluation for implementation and limited knowledge regarding how the interventions and programs might be successfully transposed internationally.5 Standardized evaluations would enable more rigorous comparison of interventions and programs as well as better translation and transposition to different contexts and populations.
There is an increasing demand for RACFs that provide places caring for older populations and the associated burden of disability and chronic illness.6 More than 335,889 Australians7 and more than 250,000 people in England and Wales reside in RACFs.8 In England, 16% of all deaths of older people each year take place in RACFs,9 in Canada, approximately 44% of older people die in RACFs,10 while in Japan, the rate of deaths in RACFs is below 10%. To respond to the challenges of an aging population,11 improving end-of-life care globally is an essential goal for the health sector.9 While most people generally want to age and die in their own homes,12 due to the acute health care needs of many older people and the lack of capacity and resources to safely meet these needs in the community, in many contexts, end-of-life care in RACFs is becoming increasingly common.9
End-of-life palliative care is a holistic approach that aims to achieve the best quality of life and comfort for the person and their family during the final stages of life.13 Palliative care has shown benefits in supporting people and their family members when facing a life-threatening illness or approaching death.14 Despite the increasing prevalence of studies in palliative care in RACFs, as the end of life approaches, symptoms such as pain, pressure ulcers, nausea, breathlessness, and restlessness are poorly managed in RACFs.8 Many RACF residents receiving end-of-life care have the potential for their conditions to be managed in their RACFs, however, many are unnecessarily admitted to hospitals as emergencies.3 Unfortunately, inappropriate hospital admissions for a person approaching the end of life may be distressing, exacerbate older people's functional decline, and aggravate the burden on the health care system.15 There are between 8% and 44% inappropriate emergency department visits per year from RACF residents to manage symptoms and pain.16 In an Australian study, 4% of a general sample of RACF residents admitted to a hospital over six months died during the admission, compared to approximately 40% in a Canadian study.17 The rate of RACF residents who died in places other than their RACFs (mainly in hospitals) from 2010 to 2011 ranged from 9% in New Zealand to 18% in Australia, 19% in Canada, 27% in England, and 29% in Germany.12
Even though the necessity of quality palliative care for RACF residents at the end of life is apparent, there are still several obstacles.6 Currently, RACFs usually employ large numbers of personal care assistants to support residents’ activities of daily living, but small numbers of registered nurses in charge of medical management, clinical assessment, and facility supervision.6 Research studies have shown that obstacles can include lack of support from medical colleagues and managers due to the staffing structure of RACFs, inadequate staff education and training, lack of skilled nursing staff, and significant work pressure.6 To address the obstacles, there has been more attention and effort on implementing new services or programs to improve palliative care in RACFs.16 The interventions and programs have shown some success in supporting staff to develop their knowledge and skills as well as improving residents’ and families’ satisfaction.18
Some existing literature focuses on interventions implemented in RACFs to improve palliative care for older people at the end of life and reduce hospital admissions. A systematic review demonstrated positive results in reducing hospital admissions from RACFs by examining 11 interventions covering palliative care, advance care planning, care pathways, and geriatric specialist services. However, due to the low quality of the evidence of the included studies and lack of evaluations for each intervention, the review's clinical indications were limited.19 Standardizing the evaluation process is essential to determine the effectiveness and acceptability of an intervention or program.20 Even though there is strong agreement about the importance of consistency in outcome measures, unfortunately, a wide range of assessment instruments aiming to measure diverse outcomes has been used in published studies.21 Identifying and mapping the outcome measures implemented in evaluating diverse palliative care interventions in RACFs has not been explored recently, highlighting the need for this review. This scoping review seeks to identify and map the outcomes that have been used for evaluating the effectiveness and acceptability of different palliative care interventions and programs in RACFs in order to allow for national and international comparisons. This review will also be valuable for establishing and informing consensus to standardize outcome measures for palliative care interventions in RACFs.
The scoping review aims to provide an overview or map of the evidence available on the topic. Instead of answering a specific, clinically meaningful question or addressing the feasibility, appropriateness, meaningfulness, or effectiveness of a particular intervention or practice, scoping reviews answer broader questions regarding the diversity of the knowledge available.22 By mapping or charting the existing data, a scoping review can provide valuable information about a wide range of outcome measures of diverse palliative care interventions and programs applied in RACFs. It may also allow researchers to examine the extent and nature of research activities in evaluating the implementation of a program or initiative in the chosen topic.23
A preliminary search for existing scoping and systematic reviews focused on the implementation of palliative care interventions in residential aged care or long-term care settings was conducted using JBI Evidence Synthesis, MEDLINE, and PROSPERO. A systematic review was located that synthesized the outcome measures available to evaluate palliative care for people living in long-term care settings. It undertook systematic searches of databases from January 1, 2000 to September 12, 2008 and included 10 articles with psychometric data and matched the inclusion criteria.24 Since attention has increased on improving palliative care in RACFs, numerous programs and initiatives have been implemented in the last decade. This proposed scoping review aims to investigate the literature from 2008 onwards, and map the outcome measures specifically used to evaluate the implementation of palliative care interventions in RACFs to the present. A scoping review carried out in 2020 aimed to describe the nature of implementation strategies and to identify facilitators and barriers in this area. It described four implementation strategies (facilitation, education/training, internal engagement, and external engagement) and analyzed the facilitators and barriers to the implementation processes: “establishing conditions to introduce the intervention; embedding the intervention within the day-to-day practice; sustaining ongoing change.”25(p.563) Although there will be an overlap in studies screened for extraction (eg, evaluated palliative care programs or initiatives in RACFs since 2008), the proposed scoping review is different from the objectives of the previous scoping review in that it aims to extract data about outcome measures of the implementation. This means that there will be no overlap in the research questions or proposed outcomes. Furthermore, the existing scoping review recognized the lack of knowledge on how the implementation outcomes have been measured.25 This knowledge gap highlights the need for up-to-date research on the proposed review question.
What are the outcome measures of the effectiveness and acceptability of palliative care programs and interventions in RACFs?
According to the Australian Institute of Health and Welfare, access to aged-care services is determined by need rather than age. A broader age group (aged 50 years and over) is used for Aboriginal and Torres Strait Islander people as they have a greater need for care at younger ages compared with non-Indigenous people.26 Therefore, this scoping review will consider studies involving older adults (aged 50 years and above) in any country living and receiving care in RACFs. Literature in which only the average age of the group was reported and this met the age criteria, will be included; we will not consider studies with participants of other ages. This review will focus on people living and dying with any health condition, including cancer, in RACFs. However, this review will exclude literature that specifically focuses on people who have cancer at any age receiving palliative care in all settings.
The review will map evidence of the implementation of end-of-life palliative care interventions and programs for older people living and dying in RACFs. “Intervention” is defined as any action taken by an individual or group that intervenes to improve health, such as the provision of medical treatment.4 “Program” is defined as a specific strategy, initiative, or a series of steps or activities carried out to accomplish a common strategic goal.4
The review will consider literature about the effectiveness and acceptability of programs and interventions that have been evaluated against the objectives of providing palliative care or end-of-life care in any domain. “Effectiveness” is defined as a service outcome in a published conceptual framework27; it is the extent to which the planned outcomes are achieved.4 “Acceptability” is the perspective of various implementation stakeholders that a particular treatment, service, program, or innovation is agreeable and satisfactory. Acceptability is conceptually similar to “appropriateness,” but some literature reflects overlapping and inconsistent use when discussing these concepts.27 Nine outcome domains for the evaluation of palliative care have been identified in an existing systematic review. The domains are: “(1) symptom management; (2) whole person and maintaining the quality of life; (3) functional aspects; (4) satisfaction; (5) relationships; (6) decision making and care planning; (7) continuity and communication; (8) family burden and well-being; (9) quality of death and end-of-life experience.”24(p.5) In this review, studies that report outcomes that fall under one or more of these outcome domains will be included. Outcomes that measure effectiveness and acceptability, but are not categorized as any of the existing outcome domains, will also be identified and extracted as a new domain in the proposed scoping review.
As the evaluation of palliative care implemented in RACFs has been regarded of low reporting quality,21 all evaluations of programs and interventions of any methodological quality will be included as long as the outcome assessment was described. Studies that described interventions but did not discuss evaluation outcomes will be excluded.
This review will focus on programs and interventions implemented to provide end-of-life palliative care for older people living and dying in RACFs across all geographical areas. Implementation evaluation can be conducted in either internal contexts (eg, RACFs) or external contexts (eg, research centers) at any level of reporting quality.
The term “residential aged care facility” indicates the settings where around-the-clock personal and health care services are provided to support older people with mixed low- and high-level care needs. Residential aged care facilities may have different names in different countries, such as long-term care facilities, nursing homes, or care homes.28 Care settings, such as hospitals, palliative care inpatient units, sheltered housing, cancer centers, own homes, and hospices, where health care is provided but it does not meet the definition of RACFs, will be excluded.
Types of studies
This review will consider literature published in peer-reviewed journals using all types of methodologies (eg, qualitative, quantitative, or mixed methodology). Gray literature relevant to the topic will also be included to minimize any publication biases. Papers cited in reference lists of selected studies will be screened and identified if they meet the proposed inclusion criteria. Only literature published in English will be searched due to the limited scope for translation services. Studies published from September 2008 until the present will be included to avoid duplicating the existing systematic review identified in the preliminary searches.
This scoping review aims to identify both published and unpublished (eg, gray literature) primary studies and reviews. The review will utilize the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR)29 checklist, and will be guided by the JBI methodology for scoping reviews.22 The search strategy will follow the three-step search strategy recommended by JBI.22 The first step of an initial limited search has been undertaken in Ovid (MEDLINE and Emcare). This initial search was followed by analyzing the text words in the titles and abstracts, and the index terms. Appendix I presents a sample search strategy for MEDLINE. A second search across all included databases using all identified keywords and index terms will be undertaken. Thirdly, the reference lists of included articles will be searched for additional sources and gray literature. A librarian will assist with the development of the search strategies.
The databases to be searched include Ovid (MEDLINE, Emcare, PsycINFO), Embase, ProQuest, Web of Science, Scopus, and the Cochrane Library, including the Cochrane Central Register of Controlled Trials (CENTRAL) and the Cochrane Database of Systematic Reviews (CDSR). The search for gray literature will include World Health Organization, Department of Health (Australian Government), My Aged Care (Australian Government), and Google Scholar. Potentially useful information sources and terms may be discovered and utilized later in the searching process. If necessary, the authors of the primary studies will be contacted for further clarification of information.
The process of selecting articles will be implemented by one student researcher and three senior researchers (supervisory panel). All four reviewers have discussed and agreed on the inclusion criteria and search strategies to map all possible relevant literature. The student researcher (LM) will screen titles and abstracts with support from a second reviewer (MP). All identified citations will be uploaded into EndNote v.X9 (Clarivate Analytics, PA, USA). Literature that meets the inclusion criteria will be identified and retrieved in full. The full text of retrieved studies that do not meet the inclusion criteria will be excluded, with reasons reported in the final scoping review report. The final report will be presented in a PRISMA flow diagram30 as recommended by JBI.22 During all selection processes, any disagreements between the two primary reviewers will be resolved through consultation with the two other senior researchers (ME and GS).
As scoping reviews do not synthesize results or outcomes,22 reviewers will record and sort critical information of evidence sources. A draft data extraction table (see Appendix II) has been developed and piloted at the protocol stage to assist the research team. Data to be extracted will include the outcome measure, outcome domain(s) (eg, symptom management, family satisfaction), evaluation methods (quantitative, qualitative, or mixed), name and a brief description of program(s), the population, the geographical location of program implementation, authors, and year of publication. An additional data extraction table may be required to identify outcomes that measure effectiveness and acceptability, but are not categorized as any of the existing outcome domains. The student researcher (LM) will conduct the extraction process, supported by the second reviewer (MP). Any disagreements between the two primary reviewers will be resolved through consultation with the two other senior researchers (ME and GS). The data extraction form may be further refined and updated accordingly at the review stage.
Data analysis and presentation
Tables will be used to present the extracted data with the same indicator of “outcome measure” sorted and combined to identify, characterize, and summarize evidence on the research topic. For instance, if different studies include advance care planning (ACP) as an “outcome measure,” such as staff knowledge of ACP, ACP practices, or staff attitudes towards ACP, then these studies will be sorted and combined under the same indicator of “ACP outcome measure.” Furthermore, the number of sources of evidence reporting against different outcome measures will be presented as a bar chart to indicate the prevalence of each outcome measure. A narrative summary will be provided to describe how the results relate to the review objectives and questions. The forms for presenting results may be further refined during the review process.
Lorien Delaney at the University of South Australia Library for assistance with the development of the search strategy. Kevin Hardy and Mark Millard, palliative care nurse practitioners at the Calvary North Adelaide Hospital, for their general knowledge consultation.
Appendix I: Search strategy
Date searched: January 10, 2021
- 1. Nursing Homes/
- 2. Homes for the Aged/
- 3. Long-Term Care/
- 4. (nursing home∗ or long term care facilit∗ or LTC facilit∗ or care home∗ or aged care facilit∗ or aged care home∗ or care home∗ or RACF∗).tw,kf.
- 5. 1 or 2 or 3 or 4
- 6. Palliative Care/
- 7. Palliative Medicine/
- 8. Terminal Care/
- 9. Hospice Care/
- 10. Advance Care Planning/
- 11. Advance Directives/
- 12. (palliative or end of life or terminal care or advance care plan∗ or advance directive∗ or hospice).tw,kf.
- 13. 6 or 7 or 8 or 9 or 10 or 11 or 12
- 14. Outcome Assessment, Health Care/
- 15. Process Assessment, Health Care/
- 16. “Quality of Health Care”/
- 17. Program Evaluation/
- 18. (outcome assessment or outcome measure∗ or process assessment or quality of health care or quality of care or quality of death or program evaluat∗ or effectiveness or acceptability).tw,kf.
- 19. 14 or 15 or 16 or 17 or 18
- 20. 5 and 13 and 19
- 21. limit 20 to yr = “2008-current”
Results retrieved: 597
Appendix II: Data extraction table
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