Background
Methods
Study design
Search strategy
“Palliative care” OR “end of life” OR “terminal care” OR “Critical care” OR hospice OR “terminally ill” OR “Palliative Care”[Majr] OR “Terminal Care”[Majr:NoExp] OR “Hospice Care”[Majr] OR “Terminally Ill”[Mesh] AND | |
“Research priorit*” OR “Health services research” OR “Research Agenda” OR “Research quest*” OR “Research Gap*” OR “Knowledge gap*” OR “Research initiative*” OR “Research recommendation*” OR “priority areas of research” OR “Evidence Base” OR “Research Subject*” OR “Policy-relevant research” OR “Research program*” OR “Research direction*” OR “Recommendations for research” OR “High-quality research” OR “Research”[Majr:NoExp] OR “Health Services Research”[Mesh:NoExp] |
Screening
Inclusion Criteria | Exclusion Criteria |
---|---|
Studies that directly elicited and identified research priorities for palliative care (including patients/carers, healthcare providers, policymakers, and researchers) and parentheses | Studies that have considered research priorities relating to specific aspect of palliative care (e.g., spiritual, medical) |
Methods of identifying priorities could include (but not limited to) surveys, qualitative studies, consensus methods (Delphi survey, nominal group technique), and workshops | Studies assessing priorities for practice and policy (quality indicators); non-research articles (policy documents, clinical guidelines, editorials, commentaries); reports of a conference, workshop or meeting that did not include information about the participants and methods; and basic science research, epidemiological studies, guidelines, and economic evaluations were excluded. |
Studies published in English | Excluded studies with an exclusive focus on populations with specific palliative care needs such as intellectual disability, paediatric, adolescent, or geriatric populations |
Quality appraisal and risk of Bias
Q1 | Q2 | Q3 | Q4 | Q5 | Q6 | Q7 | Q8 | Q9 | Q10 | Q11 | Grade | |
---|---|---|---|---|---|---|---|---|---|---|---|---|
JBI Qualitative | ||||||||||||
Diffin et al | Y | Y | Y | Y | Y | Y | N/A | Y | U | Y | – | 8/10 |
Pillemer et al | N/A | Y | Y | Y | Y | U | N/A | Y | N/A/ | Y | – | 6/10 |
Powel et al. | Y | Y | Y | Y | Y | Y | N/A/ | Y | N/A/ | Y | – | 8/10 |
JLA PSP | Y | Y | N/A | N/A | N/A | N/A | Y | Y | – | – | – | 4/8 |
JBI Systematic review | ||||||||||||
Riffin et al. | Y | Y | Y | Y | U | U | Y | Y | U | Y | Y | 8/11 |
JBI Cross sectional | ||||||||||||
Perkins et al | Y | Y | N/A | Y | U | U | U | Y | – | – | – | 4/8 |
Key | ||||||||||||
JBI Qualitative Checklist | JBI Systematic review | JBI Cross sectional | ||||||||||
Q1 | Is there congruity between the stated philosophical perspective and the research methodology? | Is the review question clearly and explicitly stated? | Were the criteria for inclusion in the sample clearly defined? | |||||||||
Q2 | Is there congruity between the research methodology and the research question or objectives? | Were the inclusion criteria appropriate for the review question? | Were the study subjects and the setting described in detail? | |||||||||
Q3 | Is there congruity between the research methodology and the methods used to collect data? | Was the search strategy appropriate? | Was the exposure measured in a valid and reliable way? | |||||||||
Q4 | Is there congruity between the research methodology and the representation and analysis of data? | Were the sources and resources used to search for studies adequate? | Were objective, standard criteria used for measurement of the condition? | |||||||||
Q5 | Is there congruity between the research methodology and the interpretation of results? | Were the criteria for appraising studies appropriate? | Were confounding factors identified? | |||||||||
Q6 | Is there a statement locating the researcher culturally or theoretically? | Was critical appraisal conducted by two or more reviewers independently? | Were strategies to deal with confounding factors stated? | |||||||||
Q7 | Is the influence of the researcher on the research, and vice- versa, addressed? | Were there methods to minimize errors in data extraction? | Were the outcomes measured in a valid and reliable way? | |||||||||
Q8 | Are participants, and their voices, adequately represented? | Were the methods used to combine studies appropriate? | Was appropriate statistical analysis used? | |||||||||
Q9 | Is the research ethical according to current criteria or, for recent studies, and is there evidence of ethical approval by an appropriate body? | Was the likelihood of publication bias assessed? | ||||||||||
Q10 | Do the conclusions drawn in the research report flow from the analysis, or interpretation, of the data? | Were recommendations for policy and/or practice supported by the reported data? | ||||||||||
Q11 | Were the specific directives for new research appropriate? |
Data extraction
Data synthesis
Results
Overview
Descriptive themes and priority areas
Service Models
Continuity of Care
Training and Education
Inequality of Access
Communication
Patient Preference and Experience
Recognising the needs and importance of Family Carers
Analytical themes
Contribution of the included studies to the final themes
Donabedian framework | De Vries et al. 2016 | Diffin et al. 2017 | Pan- Canadian Framework 2017 | PeoLPSP et al. 2015 | Perkins et al. 2008 | Pillemer et al. 2015 | Powell et al. 2014 | Riffin et al. 2015 | Shipman et al. 2008 | Sullivan et al. 2018 | |
---|---|---|---|---|---|---|---|---|---|---|---|
Structure | Service Models | X | X | X | X | X | X | X | X | ||
Continuity of Care | X | X | X | X | X | ||||||
Training and Education | X | X | X | X | X | X | X | ||||
Process | Inequality of Access | X | X | X | X | X | X | X | |||
Communication | X | X | X | X | X | X | X | ||||
Outcomes | Patient Preference and Experience | X | X | X | X | X | X | X | X | ||
Recognising the needs and importance of Family Carers | X | X | X | X | X | X | X |