Patient and carer involvement in palliative care research: An integrative qualitative evidence synthesis review

Abstract

Background: Patient/carer involvement in palliative care research has been reported as complex, difficult and less advanced compared to other areas of health and social care research. There is seemingly limited evidence on impact and effectiveness. Aim: To examine the evidence regarding patient/carer involvement in palliative care research and identify the facilitators, barriers, impacts and gaps in the evidence base. Design: Qualitative evidence synthesis using an integrative review approach and thematic analysis. Data sources: Electronic databases were searched up to March 2018. Additional methods included searching websites and ongoing/unpublished studies, author searching and contacting experts. Eligibility criteria were based on the SPICE (Setting, Perspective, Intervention, Comparison, Evaluation) framework. Two quality assessments on methodology and involvement were undertaken. Results: A total of 93 records were included. Eight main themes were identified, mainly concerning facilitators and barriers to effective patient and carer involvement in palliative care research: definitions/roles, values/principles, organisations/culture, training/support, networking/groups, perspectives/diversity, relationships/communication and emotions/impact. Evidence on the impact of involvement was limited, but when carried out effectively, involvement brought positive benefits for all concerned, improving the relevance and quality of research. Evidence gaps were found in non-cancer populations and collaborative/user-led involvement. Conclusion: Evidence identified suggests that involvement in palliative care research is challenging, but not dissimilar to that elsewhere. The facilitators and barriers identified relate mainly to the conduct of researchers at an individual level; in particular, there exists a reluctance among professionals to undertake involvement, and myths still perpetuate that patients/carers do not want to be involved. A developed infrastructure, more involvement-friendly organisational cultures and a strengthening of the evidence base would also be beneficial.

Partnering with frail or seriously ill patients in research: a systematic review

“…The barriers and facilitators to partnering with frail and/ or seriously ill patients (e.g., funding, infrastructure, role clarity, capacity building for both patients and researchers, structural inclusivity, trust and willingness to collaborate) are similar to those reported in other systematic and scoping reviews of patient engagement [2,12,22,28,[75][76][77]. When engaging frail and/or seriously ill patients as partners across the research cycle, the degree of illness and/or frailty, and potential instability in patients' health warrants more concern for [7, 45, 47, 51, 53-55, 62, 63, 69, 70] 11 (37%) Emotional/peer support [7, 51, 53, 55, 57, 62-64, 66, 69, 70] 5 (17%) Emotional vulnerability or emotional distress [7,47,55,71,72] 10 (33%) Incorporation of patients' priorities for research and outcomes [7,24,50,51,54,56,57,61,65,67] 8 (27%) Develop new knowledge and skills [45,51,55,59,60,62,63,71] 5 (17%) Physical/cognitive fatigue [7,47,53,55,72] 3 (10%) Acquire insights into disease and treatment [51,55,69] Researcher -Perceived Impacts…”

Patient and public involvement in palliative care research: What works, and why? A qualitative evaluation

“…Similar to other studies, our findings showed the importance of the broad principle of flexibility to facilitate involvement. 11,[24][25][26] In palliative care, providing flexible methods of involvement (e.g. in-person, online) was seen to be essential to successfully collaborate with individuals living in complex and unpredictable circumstances.…”

“…10 A recent review identified eight broad themes which facilitated and hindered successful involvement within this field. 11 These included definitions and roles, values and principles, organisations and culture, training and support, networking and groups, perspectives and diversity, relationships and communication, and emotions and impact. 11 However, most involvement in palliative care research to date has been consultative, rather than co-productive, and many of the approaches which have been evaluated have focused only on cancer-specific populations.…”

“…11 These included definitions and roles, values and principles, organisations and culture, training and support, networking and groups, perspectives and diversity, relationships and communication, and emotions and impact. 11 However, most involvement in palliative care research to date has been consultative, rather than co-productive, and many of the approaches which have been evaluated have focused only on cancer-specific populations. 7,[10][11][12] Daveson et al conducted a transparent expert consultation with palliative care patients, informal carers and researchers to better understand priorities for public involvement in palliative care.…”

Digital Health Interventions in Palliative Care: A Systematic Meta-Review and Evidence Synthesis

“…Palliative care research participation: Research involving people who are terminally ill is difficult due to the perceived vulnerability of the population and professional caution. 40 Professional gatekeeping is a challenge, 64 and biased samples consisting of patients who are mostly well or particularly motivated is often problematic. However there is ample evidence that many terminally ill patients are interested in taking part in research and may benefit from doing so.…”