Background: Well-being is critical to living well and flourishing after stroke. While physical aspects of recovery are commonly well-addressed within services, broader aspects of well-being can remain unrecognised and unsupported in care.
Aims: To identify how people’s experiences in stroke services impact on well-being.
Methods: Our research uses Interpretive Description methodology. Using He Awa Whiria as a framework for upholding Māori and non-Māori knowledges, we conducted 37 semi-structured interviews with 24 people with stroke and 13 family or whānau members. Data were analysed using reflexive thematic analysis.
Results: People impacted by stroke report many unspoken, unseen and seemingly invisible experiences during care which impact on their well-being. In this presentation, we report on one theme identified: “the hidden emotional work”. People undertook significant emotional work in response to the social, emotional, and relational impacts of stroke. The depth of this work was reportedly unseen by others, sometimes hidden from staff, and at times, made visible but then actively or passively silenced through clinicians’ care practices. Examples include giving primacy to people’s physical needs, excluding family and whānau, and diminishing the person’s worldview and cultural identity. This could compound the emotional burden carried by people with stroke and whānau, and overall, contributed to many people reporting a dominant sense of feeling alone and unheard. Care processes did not appear to prompt or support staff to attend to people’s emotions; instead, this was reliant on individual staff recognising and providing support.
Conclusion: The emotional impacts of stroke are significant, yet not consistently recognised. It appears vital that clinicians and services create space to attend to and support people’s emotions and broader well-being. This work should prompt reconsideration of what is valued and given primacy in stroke care, if we are to provide high-quality, person-centred care that supports people to live well after stroke.