Researchers’ and Research Users’ Experiences With and Reasons for Working Together in Spinal Cord Injury Research Partnerships: A Qualitative Study

Research partnership approaches are becoming popular within spinal cord injury (SCI) health research system, providing opportunities to explore experiences of and learn from SCI research partnership champions. This study aimed to explore and describe SCI researchers’ and research users’ (RU’) experiences with and reasons for conducting and/or disseminating (health) research in partnership in order to gain more insight into potentially ways to build capacity for and foster change to support research partnerships within a health research system.

Underpinned by a pragmatic perspective, ten semi-structured timeline interviews were conducted with researchers and RU who have experiences with SCI research partnerships. Interviews focused on experiences in participants’ lives that have led them to become a person who conducts and/or disseminates research in partnership. Data were analysed using narrative thematic analysis.

We identified three threads from participants’ stories: (1) seeing and valuing different perspectives, (2) inspirational role models, and (3) relational and personal aspect of research partnerships. We identified sub-threads related to experiences that participants draw on how they came to be a person who engage in (health) research partnerships, and sub-threads related to participants’ reasons for engaging in research partnerships. While most subthreads were identified from both researchers’ and RU’ perspectives (eg, partnership successes and failures), some were unique for researchers (morally the right thing to do) or RU (advocating).

Using a narrative and pragmatic approach, this study provided a new understanding of SCI researchers’ and RU’ partnership experiences over time. We found that participants’ research partnership experiences and motivations align with components of leadership theories. The findings from this study may be used to inform strategies and policy programs to build capacity for conducting and disseminating (health) research in partnership, within and beyond SCI research.