Article Text

Original research
Challenges implementing a carer support intervention within a national stroke organisation: findings from the process evaluation of the OSCARSS trial
  1. Sarah Darley1,
  2. Sarah Knowles1,
  3. Kate Woodward-Nutt2,
  4. Claire Mitchell3,
  5. Gunn Grande4,
  6. Gail Ewing5,
  7. Sarah Rhodes6,
  8. Audrey Bowen3,
  9. Emma Patchwood3
  1. 1Alliance Manchester Business School, The University of Manchester, Manchester, UK
  2. 2NIHR Collaboration for Leadership in Applied Health Research and Care, Greater Manchester, Manchester, UK
  3. 3Division of Neuroscience and Experimental Psychology, The University of Manchester, Manchester Academic Health Sciences Centre (MAHSC), Manchester, UK
  4. 4Division of Nursing, Midwifery and Social Work, School of Health Sciences, The University of Manchester, Manchester Academic Health Sciences Centre (MAHSC), Manchester, UK
  5. 5Centre for Family Research, University of Cambridge, Cambridge, Cambridgeshire, UK
  6. 6Centre for Biostatistics, Division of Population Health, Health Services Research and Primary Care, The University of Manchester, Manchester Academic Health Sciences Centre (MAHSC), Manchester, UK
  1. Correspondence to Dr Sarah Darley; sarah.darley{at}manchester.ac.uk

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 ISRCTN58414120.

  • stroke
  • qualitative research
  • public health
https://creativecommons.org/licenses/by/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.

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Footnotes

  • Twitter @sardarl, @gunn_grande, @gailewing_cfr, @audreybowenprof, @DrPatchwood

  • Contributors All authors (SD, SK, KW-N, CM, GG, GE, SR, AB and EP) contributed to the design of this study. SD, KW-N, CM and EP contributed to recruitment, collected the data and contributed to the analysis. All authors (SD, SK, KW-N, CM, GG, GE, SR, AB, EP) contributed to interpretation of findings and writing of the manuscript.

  • Funding This project was supported by the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care (NIHR CLAHRC) Greater Manchester, grant number (N/A) and Stroke Association, grant number (N/A). Some Stroke Association staff were research participants in this study and others contributed to discussions about findings and dissemination. The first author had full access to all the study data and had final responsibility for the decision to submit for publication.

  • Disclaimer NIHR had no role in study design, data collection, data analysis, data interpretation, or writing of the paper. Stroke Association partnered with NIHR in funding this study and was the specialist stroke service provider in OSCARSS. The views expressed in this article are those of the author(s) and not necessarily those of the NIHR, the Department of Health and Social Care, or the Stroke Association.

  • Competing interests GG reports grants from NIHR CLAHRC, during the conduct of the study; In addition, GG has a patent Copyright issued. GE reports grants from NIHR, during the conduct of the study; In addition, GE has a patent Copyright issued. SR reports grants from NIHR, during the conduct of the study. AB reports grants from NIHR, grants from Stroke Association, during the conduct of the study; grants from Stroke Association, grants from NIHR, outside the submitted work. EP reports grants from Stroke Association, outside the submitted work. SD, SK, KW-N and CM have nothing to disclose.

  • Patient consent for publication Not required.

  • Ethics approval Ethics approval was obtained from the North West Lancaster Research Ethics Committee (ref: 16/NW/0657) and University of Manchester (ref: AMBS-2016–22).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement All data relevant to the study are included in the article or uploaded as online supplemental information. No additional data available.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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