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

Abstract

Objectives To examine the implementation of an intervention to support informal caregivers and to help understand findings from the Organising Support for Carers of Stroke Survivors (OSCARSS) cluster randomised controlled trial (cRCT). Design Longitudinal process evaluation using mixed methods. Normalisation process theory informed data collection and provided a sensitising framework for analysis. Setting Specialist stroke support services delivered primarily in the homes of informal carers of stroke survivors. Participants OSCARSS cRCT participants including carers, staff, managers and senior leaders. Intervention The Carer Support Needs Assessment Tool for Stroke (CSNAT-Stroke) intervention is a staff-facilitated, carer-led approach to help identify, prioritise and address support needs. Results We conducted qualitative interviews with: OSCARSS cRCT carer participants (11 intervention, 10 control), staff (12 intervention, 8 control) and managers and senior leaders (11); and obtained 140 responses to an online staff survey over three separate time points. Both individual (carer/staff) and organisational factors impacted implementation of the CSNAT-Stroke intervention and how it was received by carers. We identified four themes: staff understanding, carer participation, implementation, and learning and support. Staff valued the idea of a structured approach to supporting carers, but key elements of the intervention were not routinely delivered. Carers did not necessarily identify as ‘carers’, which made it difficult for staff to engage them in the intervention. Despite organisational enthusiasm for OSCARSS, staff in the intervention arm perceived support and training for implementation of CSNAT-Stroke as delivered primarily by the research team, with few opportunities for shared learning across the organisation. Conclusions We identified challenges across carer, staff and organisation levels that help explain the OSCARSS cRCT outcome. Ensuring training is translated into practice and ongoing organisational support would be required for full implementation of this type of intervention, with emphasis on the carer-led aspects, including supporting carer self-identification. Trial registration number NCT58414120.

Participatory research with carers: A systematic review and narrative synthesis

“… Development and evaluation of intervention to improve communication between professionals and carers/RCT 113 Development and evaluation of intervention to improve communication between professionals and carers/Mixed method process evaluation 114 …”

“…Development and evaluation of intervention to improve communication between professionals and carers/RCT 113 …”

“… 89 , p.225 Carers also identified key messages and additional implications for practice. 80 , 113 , 126 An important caveat was that ‘there is not a single view held by carers but multiple perspectives’, 24 , p.89 which cannot be represented by one carer, something emphasised in consultation with the NIHR carers' steering group. Therefore, multiple carers should be involved.…”

Collaborative evaluation of a pilot involvement opportunity: Cochrane Common Mental Disorders Voice of Experience College

“…The framework was chosen to help structure our evaluation with transferable learning as an outcome, to identify issues that are known to typically impact whether an activity—in this case, the College—is successful or not. Although NPT was initially presented as an option for framing the evaluation and proceeded based on consumer agreement, the choice of this particular framework was from an academic author (S. K.) who had previously used the theory successfully in PPI discussions with public contributors 27 . In this previous instance, the theory was presented to the PPI group as it was already the chosen framework for the overall implementation evaluation of the trial.…”

“…Although NPT was initially presented as an option for framing the evaluation and proceeded based on consumer agreement, the choice of this particular framework was from an academic author (S. K.) who had previously used the theory successfully in PPI discussions with public contributors. 27 In this previous instance, the theory was presented to the PPI group as it was already the chosen framework for the overall implementation evaluation of the trial. There is therefore a gap regarding genuine collaborative identification of theoretical frameworks.…”