Family caregivers’ experiences of involvement in co-design research: A qualitative systematic review to develop involvement recommendations

Background Co-design and participatory approaches that actively involve stakeholders in the research process have become increasingly prominent in healthcare and nursing research in recent decades. The growing number of publications has been accompanied by an increasing interest in mapping, collating, and synthesizing the existing evidence in the field. However, there has yet to be a systematic review that specifically explores the involvement of family caregivers in co-design research. Objective This systematic review aims to synthesize evidence on family caregivers’ experiences of involvement in co-design research and to develop recommendations for involvement in future co-design projects. Information sources PubMed, Cumulative Index to Nursing and Allied Health Literature, and PsycINFO. Methods This qualitative systematic review employed a meta-aggregative approach, following the Joanna Briggs Institute’s guidelines, and is reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses. Systematic searches were conducted in November 2025 to identify primary studies that (1) describe the experiences of adult family caregivers of adult patients involved in co-design or participatory research; (2) employ a qualitative or mixed-methods design; and (3) are published in English, Spanish, Swedish, Norwegian, or Danish. Study selection was managed in Covidence, and titles, abstracts, and full-text records were screened independently by pairs of reviewers, with a third reviewer resolving discrepancies. The quality of the included studies was appraised using the Joanna Briggs Institute’s Critical Appraisal Checklist for Qualitative Research, and data were extracted using a customized template. Synthesized findings were generated from the extracted data, and their confidence was established using the ConQual approach. Lastly, recommendations for involvement were generated in collaboration with family caregivers and co-design researchers. Results A total of 10,189 records were screened for relevance, of which 18 studies were included, describing experiences from 210 family caregivers involved in co-design research. The meta-aggregation generated five synthesized findings: motives for involvement, an open atmosphere, an authentic partnership, enablers and benefits of involvement. From these, six recommendations for involvement were developed. Overall, the quality of the studies was high, yet their ConQual assessment scores were low, largely owing to mixed stakeholder populations and insufficient reporting of researcher positionality and reflexivity. Conclusions While many family caregiver experiences align with established principles of stakeholder engagement, unique motives and constraints shape their involvement. These findings and recommendations can support more meaningful and inclusive involvement of family caregivers. Future research should validate these findings and strengthen the representation of caregivers with high caregiving demands. Registration PROSPERO (Blinded for peer-review).