Tracking involvement over time: a longitudinal study of experiences among refugee parents involved as public contributors in health research

Abstract

Purpose Patient and public involvement (PPI) is becoming more common in research, but has been problematized for lack of diversity. While PPI literature increasingly focuses on assessment of PPI on research, a focus on the contributors is less common. This study tracked the experiences of involvement among four refugee parents involved as public contributors in a child mental health trial, over three years. Methods The study used a longitudinal qualitative design with focus group discussions. Data were analysed using thematic analysis combined with a longitudinal analysis approach. Results The refugee parents’ motivations for being involved changed from focusing on individual benefits to societal change. They initially viewed themselves as guests, which transformed into utilizing the group for social support. Time impacted trust-building positively, with continued collaboration strengthening trust. Practical aspects were dominant in the beginning, which shifted over time to allow more focus on research. They identified several learnings they gained from involvement. A discrepancy in how parents and researchers viewed involvement was identified, where parents saw researchers as owners of the research. Conclusions To sustain successful PPI collaboration over time, researchers need to prioritize investment in time and resources, in communication, including working with interpreters, and in continued adjustments.

Ameliorating epistemic injustice in practice: Communication strategies in a research project with refugee youth coresearchers

“…Similar insights were previously discussed by Burroughs and Tollefsen, 17 who stated that relationships is central to the epistemic position of children. This was also seen in youth involvement in mental health research 13,26 and in involvement with refugees 11,27 . It is well‐established that conducting PPI in an ethical and meaningful way, takes time and commitment with relationships that might last beyond the project itself 28 .…”

“…This was also seen in youth involvement in mental health research 13 , 26 and in involvement with refugees. 11 , 27 It is well‐established that conducting PPI in an ethical and meaningful way, takes time and commitment with relationships that might last beyond the project itself. 28 This requires researchers to step away from their established ways of working with research, learn new skills, such as communicative skills.…”

A rocky road but worth the drive: A longitudinal qualitative study of patient innovators and researchers cocreating research

“…It should be considered that patient innovators are generally quite experienced with the healthcare system and actively engaged in improving self‐care and healthcare services for themselves and others, which are qualities shared by so‐called lead patients or second‐generation e‐patients. 55 , 56 Whereas the patient innovators in our programme desired strong influence on decision‐making in the programme, PPI research in other settings shows that this may not always be the case, 57 highlighting the importance of adjusting partnership practices to the expectations of partnership members. More studies are needed that elucidate when (i.e., in what type of research study and when in a research process) partnership between researchers, patients, and caregivers is purposeful; how partnership is understood (i.e., what classifies or does not classify as partnership) by different actors; and the impact of partnership research beyond research productivity.…”

“…It should be considered that patient innovators are generally quite experienced with the healthcare system and actively engaged in improving selfcare and healthcare services for themselves and others, which are qualities shared by so-called lead patients or second-generation e-patients. 55,56 Whereas the patient innovators in our programme desired strong influence on decision-making in the programme, PPI research in other settings shows that this may not always be the case, 57…”