Exploring the impact of a diagnosis of Huntington’s Disease on couple relationships

Abstract

This study explores the impact of a diagnosis of Huntingtons Disease (HD) on couple relationships. A qualitative research method was used, based on the Free Association, Narrative and Interview Method, in order to interview three couples and four individuals. The couple relationships examined were at different stages of the HD illness trajectory, ranging from one couple where a diagnosis was made eighteen months before interview to two couples whose partners had died following several years of illness. From a thematic analysis of interview content, three over-arching themes and ten sub-themes were identified. The first over-arching theme refers to the ways that couples first became fully aware of the family history of HD and the implications this knowledge had for their lives and others within their families. The second overarching theme tracks the different ways that this knowledge was handled by the couple themselves and with other family members. The third overarching theme identifies key dilemmas faced by couples in managing the transition from a pre-illness to an illness dominated relationship. These dilemmas were-a) balancing anxious concern with a respect for independence, b) managing the loss of a sexual relationship and c) managing the move into residential care. All three of these challenges can be understood as being linked to how couples regulate emotional and physical distance during the course of the illness trajectory.

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ORCID for Joanne Brown: orcid.org/0000-0002-3383-8809

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