Developing the SELF study: A focus group with patients and the public

Abstract

Research and learning methodologies Developing the SELF study: A focus group with patients and the public Background: Patient and public involvement (PPI) in the research process is a key feature of NHS Research and Development policy but reporting of the extent and value of PPI in relation to physiotherapy research is lacking. Aims: To determine whether the proposed methodology within the randomized controlled trial aspect of the SELF study was acceptable to patients and to ascertain whether enhancements could be made in relation to elements that matter most to patients. Methods: A focus group discussion was undertaken with four lay people who were currently attending physiotherapy. The data was transcribed verbatim and analysed using the framework method. Findings: The lay members found the proposals to be generally acceptable but were able to suggest enhancements to the SELF study's design relating to recruitment, retention, blinding, and acceptability of the intervention. Additionally, we were able to recruit lay members to the trial steering committee. Conclusion: The unique perspective offered by PPI has resulted in enhancements to the SELF study's design and a means of maintaining PPI throughout the conduct of the SELF study has been established.

Understanding the role of patient and public involvement in renal dietetic research

“…5 Patients have initially expressed interest but not turned up; dropped out, despite promises of remuneration 5 , or felt less inclined to participate due to multiple trips to clinical environments. 26 However, this study experienced fewer barriers recruiting patients than suggested by much that is reported in the current literature. We suggest this may be attributed to our recruitment strategy on consultation with a PAG and taking their feedback into account, for example, a patient's clinical management of specialty, since people attend hospital many times in renal medicine and thus do not want to attend on a separate occasion.…”

“…7 This approach of involving patients at every stage of the research process has previously been reported as lacking in earlier PPI initiatives. 6 Recruitment to PPI studies has been challenging for researchers, such as in physiotherapy PPI 26 and dementia PPI 27 who also reported difficulties recruiting. 7 This has similarly reflected recruitment strategies with larger clinical studies.…”

Optimising the validity and completion of adherence diaries: a multiple case study and randomised crossover trial

“… High: in the exergame group ( n = 7) 7 weeks were correct, 5 weeks varied by <3/27 exercises across all participants. Case 4: SELF pilot Pilot pragmatic open trial comparing self-managed loaded PT exercise with usual PT for rotator cuff tendinopathy (single centre, private clinic) Experimental ( n = 12): Completion of sets of exercises per day (1 tick per session for 2 sessions a day) (3 months) ▪Interview ▪Sample diary ▪Viewed sample of completed diaries ▪Pilot results publication [ 43 ] ▪In -press results of substantive study ▪Substantive study protocol [ 44 ] ▪Qualitative pilot publication [ 45 ] ▪Patient and public involvement publication [ 46 ] 1 A4 page (×1–5); 7 items per week; frequency (tick); returned at each appointment High: 92 % (11/12) Medium-high: 7 complete data (all consecutive diaries), 4 partial data. Returned diaries were well-completed on viewing, with the occasional incorrect completion.…”

Opening up the black box: an introduction to qualitative research methods in anaesthesia

“…In addition, research funding bodies and ethics committees are often mandated to consider the views of service users and the general public in their deliberations about study questions regardless of methodological orientation. In this capacity, qualitative methods offer the researcher the tools to understand patient and public concerns before study design, in development of research strategy and later, in dissemination of findings .…”