Exploring patient and public involvement in stroke research: a qualitative study

Abstract

Purpose: To explore the experiences of patients and carers involved in patient and public involvement (PPI) activities for stroke research.Method: Semi-structured interviews conducted with stroke survivors and carers (n=11) were analysed using thematic analysis.Results: Four key themes emerged: impact of PPI on the individual and the research process, credibility and expertise, level of involvement, and barriers and facilitators to PPI for stroke survivors and carers. The perceived benefits to the research process included: asking questions, keeping researchers grounded and directing the research agenda. All participants drew upon their experiential expertise in their PPI role, but some also drew upon their professional expertise to provide additional credibility. Stroke survivors and carers can be involved in PPI at different levels of involvement simultaneously and the majority of participants wanted to be more involved. Barriers to involvement included: location, transport and stroke survivors capacity to concentrate and comprehend complex information.Facilitators included: reimbursement for travel and time and professionals effort to facilitate involvement.Conclusions: PPI in stroke research benefits stroke survivors and carers and is perceived to benefit the research process. The barriers and facilitators should be considered by professionals intending to engage stroke survivors and carers collaboratively in research. Implications for rehabilitation This study has implications for PPI in stroke rehabilitation research, which could also be extrapolated to stroke rehabilitation service development and evaluation. Professionals facilitating PPI need to invest in developing supportive relationships in order to maintain ongoing involvement. Professionals need to be aware of how the varied consequences of stroke might impede participation and strategies to facilitate involvement for all who wish to be involved. For each rehabilitation issue being considered professionals need to decide: (1) how representative of the specific rehabilitation population the PPI members need to be, (2) whether experience alone is sufficient or whether additional professional skills are required and (3) whether training is likely to assist involvement or potentially reduce the lay representation.3

Rehabilitation environments: Service users’ perspective

“…This project was collaboration between consumer investigators from the three metropolitan local health networks of Adelaide, South Australia, and researchers from Flinders University and South Australia Department of Health. This collaborative approach has been promoted as a way of ensuring credibility and relevance of health research …”

PERSPECTIVES: Stroke survivors' views on the design of an early‐phase cell therapy trial for patients with chronic ischaemic stroke

“…Our study is a part of a wider exercise that will also explore views from different stakeholders, particularly caregivers, in separate studies. The rationale behind this strategy is based on the growing body of evidence for disconnect in the perception/acceptance of risk and benefit, between patients and caregivers …”

“…The rationale behind this strategy is based on the growing body of evidence for disconnect in the perception/acceptance of risk and benefit, between patients and caregivers. 15,17,25,30,31 The requirement to travel and engage in an in-depth interview meant that the study did not include patients with very severe disability, cognitive deficits and severe aphasia. The participants were therefore not fully representative of the overall stroke survivor community.…”

Patient and public involvement (PPI) in research is perceived to benefit stroke survivors and the research process. Barriers and facilitators exist which can be addressed to enable PPI in stroke research

“…Public and patient involvement (PPI) or, to use the more familiar Australian term, consumer involvement in setting the research agenda and even conducting research is a natural extension of research participants’ autonomy. Yet, as Harrison and Palmer () point out, “…the current evidence base surrounding PPI [at least] in stroke research is ambiguous”. This, coupled with the fact that in the Australian context this type of consumer involvement is at best fledgling, makes this paper of interest not only to those involved in setting the research agenda in stroke but to stakeholders in research of all types.…”

“…Harrison and Palmer () acknowledge the limitations of their study, that the small purposive sample was British Caucasian, predominantly tertiary‐educated stroke survivors and their carers or spouses. Despite not being representative there is some indication of what involvement in planning and conducting stroke research can mean for stroke survivors, both in terms of self‐respect and the belief they are helping others.…”