Emotional, Relational, and Identity Shifts in Aphasia Caregiving: An Interpretative Phenomenological Analysis of Care...

Care partners of people with aphasia, an acquired language disorder affecting multiple linguistic modalities, face significant life changes when assuming caregiving responsibilities. These changes affect both physical and psychological well-being, yet the nuanced experiences of care partners remain underexplored.

Our aim was to explore the subjective experiences of informal care partners of people with aphasia and understand how caregiving influences their identities, relationships and emotional well-being.

Thirteen informal care partners participated in three focus groups (4-5 care partners per group) using a semi-structured interview format. Data were analysed using interpretative phenomenological analysis (IPA). IPA is a qualitative approach grounded in a double hermeneutic process in which participants make sense of their experiences and researchers engage with and interpret that sense-making to support a richer analysis than surface-level description could provide.

Analysis revealed four superordinate themes: (1) Shapeshifting to manage many roles; (2) loss of intimacy; (3) relentless positivity and (4) resentment, anger and sadness.

Caregiving in aphasia involves identity transformations, emotional labour and relational strain. Findings highlight the need for interventions that address care partners' psychosocial adjustment, normalize negative emotions, and support authentic emotional exchange within aphasia-caregiving relationships.

What is already known on the subject Care partner experiences in aphasia caregiving have been well-documented, however, current research in the field predominantly relies on descriptive qualitative methods or quantitative burden measures. In comparison, the lived and interpretive dimensions of caregiving in aphasia remain underexplored. What this study adds to existing knowledge This study examines the subjective experiences of caregiving in aphasia using interpretative phenomenological analysis, as this method allows for a deeper look at how care partners make sense of the identity, relational, and emotional-level dimensions of caregiving. What are the clinical implications of this study? To better support care partners. overall well-being, clinicians could incorporate these findings into family education that includes facilitated discussions or therapeutic exercises to address topics such as identity shifts and the emotional and relational complexities of caregiving.