Value and learning from carer involvement in a cluster randomised controlled trial and process evaluation - Organising Support for Carers of Stroke Survivors (OSCARSS)

Abstract

Background Patient, Carer and Public Involvement (PCPI) should be embedded in health care research. Delivering PCPI can be challenging, but even when PCPI is carried out it is rarely reported resulting in lost opportunities for learning. This paper aims to describe PCPI in the OSCARSS study, a pragmatic-cluster randomised controlled trial with an embedded economic and process evaluation. Methods A carer research user group (RUG) co-developed OSCARSS to evaluate how to best deliver support to caregivers of stroke survivors. The PCPI activity involved regular meetings and preparatory work, from the initial conceptualisation of the study through to dissemination. Written reports, structured group discussions and individual interviews were carried out with the RUG and researchers to capture the added value and learning. This paper was co-authored by two of the RUG members with contributions from the wider RUG and researchers. Results The core six members of the caregiver RUG attended the majority of the meetings alongside three researchers, one of whom was the co-chief investigator. PCPI was instrumental in changing many aspects of the research protocol, design and delivery and contributed to dissemination and sharing of good practice. There were challenges due to the emotional toll when PCPI members shared their stories and the extensive time commitment. Positive experiences of learning and fulfilment were reported by the individual researchers and PCPI members. Wider organisational administrative and financial support facilitated the PCPI. The researchers’ existing positive regard for PCPI and the clear focus of the group were key to the successful co-design of this research. Conclusions The value and learning from the PCPI collaborative work with the researchers was of benefit to the study and the individuals involved. Specific PCPI influences were a challenge to pinpoint as successful co-design meant the researchers’ and carers’ contributions were intertwined and decision-making shared.

Organising Support for Carers of Stroke Survivors (OSCARSS): a cluster randomised controlled trial with economic evaluation

“…OSCARSS was a longitudinal, pragmatic, national cluster randomised controlled trial (cRCT), underpinned by patient and public involvement from our study-specific carer advisory research group. 16 Cluster randomisation was essential to avoid contamination. Clusters were drawn from services commissioned by the National Health Service (NHS) or local authorities, delivered by a UK voluntary sector stroke specialist organisation providing long-term support to stroke survivors and carers, including hospital and home visits.…”

“…A video summarising their role in OSCARSS is available on the study website: https://www.arc-gm.nihr.ac.uk/projects/oscarss , and following GRIPP2 framework 19 we have published a separate paper on the working practices and experiences of RUG members and the researchers who facilitated the group meetings. 16 …”

“…uk/ projects/ oscarss, and following GRIPP2 framework 19 we have published a separate paper on the working practices and experiences of RUG members and the researchers who facilitated the group meetings. 16 Participants English-speaking informal carers of stroke survivors were eligible if they were over 18 years old and received at least one face-to-face support contact from participating cluster staff. Carers could be included at any time poststroke event with any level of need or support requirements.…”

Challenges implementing a carer support intervention within a national stroke organisation: findings from the process evaluation of the OSCARSS trial

“…A video summarising their role in OSCARSS is available on the study website ( https://www.arc-gm.nihr.ac.uk/projects/oscarss ) and a paper reflecting on their input. 16 In the early stages of data analysis, three meetings were held to focus on the process evaluation where SD, SK and EP shared and discussed themes from the data with the RUG. In these meetings, NPT and the value of this framework for understanding the findings were collaboratively discussed.…”

“…The involvement of carers in particular was integral in making the wording stroke specific and informing implementation of the intervention in practice. 16 The adaptation resulted in the CSNAT-Stroke intervention, including a staff training and implementation package tailored to the stroke organisation. Training was mainly delivered to front-line staff who are non-clinical support staff that provide personalised information, advice and support to stroke survivors and their carers.…”