Introduction For many living with Huntington’s disease, care is provided by family members, primarily partners: a role revealed to adversely affect carers’ psychological well-being in other neurodegenerative conditions. The partner relationship has been argued as the most sensitive to this impact. To date there has been little systematic exploration of the impact of caring for a partner with HD, and what published literature is available is constrained by its chosen methodology.
Aim This research aims to complement and add to the current literature base exploring the experiences of partner carers of individuals diagnosed with HD and explore any psychological impacts of the caring process.
Method Qualitative interviews with six partner carers were undertaken, analysed and interpreted using Interpretative Phenomenological Analysis (IPA).
Results Five super-ordinate emergent themes were elicited and comprised: Collective vs. Individual Care; The Invisible Partner; The Emotional Roundabout; Struggling in the Present; and Ways of Being. Sub-themes provided exploration of idiosyncrasies between respondents within these broader super-ordinate themes.
Conclusions All themes privileged challenges, which affirmed and disempowered those in caring roles. Dilemmas posed by responses and choices made by respondents are discussed alongside maintenance cycles of the emotional phenomena identified. Themes resonated with those described by other carers with isolation, absence of reciprocity and impact on wider family members prominent. Potential clinical and research implications are discussed considering need to further explore these phenomena.
- Huntington’s disease
- Psychological impact
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