The Work of Well‐Being: How People Work to Support Their Well‐Being After Stroke

Abstract

Introduction Stroke can have a range of impacts on a person's life. Previous research has highlighted the need for greater attention to well-being, with people with stroke reporting that well-being is not well addressed in stroke services and therefore remains an area of unmet need. While previous research has considered how services address well-being, this study focused on those with stroke, exploring the work they did to maintain and enhance their well-being while receiving care from stroke services. It also examined how stroke services appeared to influence this work.

Materials and Methods Underpinned by Interpretive Description methodology, interviews were conducted with 37 people impacted by stroke (24 people with stroke, 13 family members) across the North Island of Aotearoa New Zealand. Data were analysed using directed content analysis guided by Normalisation Process Theory.

Results People described undertaking significant work to support their well-being whilst receiving care from stroke services. We identified six interwoven forms of work which involved ‘inward work’—sense-making, emotional work and reconnecting work—and ‘outward work’—navigating health services, advocating for needs and doing rehabilitation. All were influenced by a person's network of relationships. People impacted by stroke perceived that the depth of this work was unseen by health professionals and described how stroke services could act to either reduce or exacerbate the work that they were doing for their well-being.

Conclusions These findings show how people actively work to sustain their well-being whilst receiving care from stroke services. By examining how stroke services influence this ‘well-being work’, we highlight areas where health services may focus efforts to support well-being. Health professionals can acknowledge the work that people are doing and foster the resources they already hold, such as supporting people to engage in roles, relationships, cultural practices and social contexts that support their well-being from early in care. By doing so, health professionals and service leaders may set a foundation to better support people's well-being both in the moment and in the long-term.

Patient or Public Contribution People with stroke, family members, and people who provide support to people with stroke, and health professionals set priorities for this research. They advised on study conduct and have provided feedback on wider findings from the research.