One size does not fit all – Stroke survivor’s views on group self-management interventions

Abstract

Introduction: Stroke is the main cause of complex disability in the UK. Many stroke survivors feel abandoned when rehabilitation ends and more than half are left with long-term unmet needs. There is now emerging interest in whether group self-management programs (SMP) specifically for stroke survivors could help. However, more work is required to understand the acceptability of group SMPs to stroke survivors and the factors of concern that could impact efficacy.

Purpose: The purpose of this study is to explore stroke survivor’s views on (1) possible benefits of a group SMP, (2) possible challenges of a group SMP, and (3) when/where to implement a SMP in an individual’s stroke journey.

Method: Fourteen stroke survivors took part in semi-structured interviews, which were analyzed using an inductive thematic approach.

Results: Three main themes were identified in the data: (1) a space to share support, (2) it is not a one size fits all problem, and (3) how is it all going to happen?

Conclusion: A varied group of stroke survivors can provide valuable insight and ideas about how group SMP’s should be constructed. To the best of our knowledge, this is the first patient engagement study that explores group SMPs for stroke. In future work, researchers may find it helpful to consider the findings from this study to inform the design of group SMPs.

Implications for Rehabilitation

• There is interest in whether unmet needs after stroke could be addressed through a group self-management program (SMP).

• Stroke survivors can provide valuable insight and ideas about how group SMPs should be constructed.

• Group SMPs should carefully consider: how to create a safe space in which stroke survivors feel comfortable, the impact of the facilitators, tailoring the group to the individual, the presence of carers, and the emotional impact of a group SMP.

Keywords:

• Self-management
• stroke
• rehabilitation
• group
• chronic disease
• peer support

Disclosure statement

The authors report no declarations of interest.

Additional information

Funding

The “Group self-management after stroke” study is funded by the National Institute for Health Research (NIHR)’s Research for Patient Benefit Program. EC is the Trial Manager of this study. The National Institute for Health Research funds the Research for Patient Benefit Program “Group self-management after stroke” project grant at University College Hospitals London. This is a summary of independent research funded by the National Institute for Health Research’s Research for Patient Benefit Program (Grant no. PB-PG-1013–32101). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.