Unspoken, Unseen and at Time Silenced: The Emotional Work of People in Stroke Services in Aotearoa

Abstract

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, including emotional aspects, can remain unrecognised and unsupported in care.

Study aim: To identify how people’s experiences in stroke services impact on well-being.

Methodology: Interpretive Description, exploring the experiences of people, family and whānau in stroke services

Data gathering: Semi-structured interviews. 24 people with stroke and 13 family and whānau members

Data analysis: Reflexive thematic analysis

Findings: People undertake significant emotional work to navigate the impacts of stroke. People are involved in sense-making about the past and why the stroke occurred, (re)negotiating what is meaningful, navigating deep uncertainty and feelings of disconnection from self, from important others, and from elements of meaning in life. However, 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 care practices. This could compound the emotional burden carried by people with stroke and whānau, and overall, contributed to people feeling alone and unheard. This burden could be mediated through the inherent resources that people held, through family, whānau and social networks, through cultural and spiritual identity, and through the practices of stroke clinicians.