The impacts of partnering with cancer patients in palliative care research: a systematic review and meta-synthesis

Alessandra Paolucci; Ingrid Nielssen; Karen L Tang; Aynharan Sinnarajah; Jessica E Simon; Maria J Santana

doi:10.1177/26323524221131581

The impacts of partnering with cancer patients in palliative care research: a systematic review and meta-synthesis

Palliat Care Soc Pract. 2022 Oct 18:16:26323524221131581. doi: 10.1177/26323524221131581. eCollection 2022.

Authors

Alessandra Paolucci¹, Ingrid Nielssen², Karen L Tang^{2

3}, Aynharan Sinnarajah^{2

4

5

6}, Jessica E Simon^{2

3

6}, Maria J Santana^{2

7}

Affiliations

¹ Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, 3330 Hospital Dr NW, Calgary, AB T2N 4N1, Canada.
² Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada.
³ Department of Medicine, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada.
⁴ Department of Family Medicine, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada.
⁵ Department of Medicine, School of Medicine, Queen's University, Kingston, ON, Canada.
⁶ Department of Oncology, Faculty of Medicine, University of Calgary, Calgary, AB, Canada.
⁷ Department of Pediatrics, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada.

Abstract

Background: Palliative care (PC) is an added layer of support provided concurrently with cancer care and serves to improve wellbeing and sustain quality of life. Understanding what is meaningful and a priority to patients, their families, and caregivers with lived experience of cancer and PC is critical in supporting their needs and improving their care provision. However, the impacts of engaging cancer patients within the context of PC research remain unknown.

Objective: To examine the impacts of engaging individuals with lived experience of cancer and PC as partners in PC research.

Methods: An a priori systematic review protocol was registered with PROSPERO (CRD42021286744). Four databases (APA PsycINFO, CINAHL, EMBASE, and MEDLINE) were searched and only published, peer-reviewed primary English studies aligned with the following criteria were included: (1) patients, their families, and/or caregivers with lived experience of cancer and PC; (2) engaged as partners in PC research; and (3) reported the impacts of engaging cancer PC patient partners in PC research. We appraised the quality of eligible studies using the Critical Appraisal Skills Program (CASP) and GRIPP2 reporting checklists.

Results: Three studies that included patient partners with lived experience of cancer and PC engaged at all or several of the research stages were identified. Our thematic meta-synthesis revealed impacts (benefits and opportunities) on patient partners (emotional, psychological, cognitive, and social), the research system (practical and ethical) and health care system (service improvements, bureaucratic attitudes, and inaction). Our findings highlight the paucity of evidence investigating the impacts of engaging patients, their families and caregivers with lived experience of cancer and PC, as partners in PC research.

Conclusions: The results of this review and meta-synthesis can inform the more effective design of cancer patient partnerships in PC research and the development of feasible and effective strategies given the cancer and PC context patient partners are coming from.

Keywords: cancer; engagement; impact; palliative care; partnering; patient partner; patient-oriented research; systematic review; thematic meta-synthesis.

Publication types

Review