Navigating competing needs: a qualitative study on parenthood with a partner with Huntington’s disease

TL;DR

This study explores how parents without Huntington’s disease manage family life when their partner has the condition, highlighting emotional and practical challenges.

Contribution

The study provides new qualitative insights into the lived experiences of non-affected parents in HD families.

Findings

Parents face competing demands while managing their partner's HD and family needs.

Emotional support and coping strategies are crucial for non-affected parents.

The genetic risk of HD significantly influences family dynamics and psychological well-being.

Abstract

Huntington’s disease (HD) is a rare neurodegenerative condition characterised by progressive symptoms affecting motricity, cognition, neuropsychiatric function and behaviour. HD develops during a period of life in which many live in partnership and have children. HD impacts all family members through its cognitive and psychological symptoms, mid-life onset, long disease trajectory and genetic risk. The aim of the study was to explore how parents without HD experience and manage parenthood when their partner is affected by HD.

Qualitative interviews with 14 caregivers were analysed using reflexive thematic analysis.

Three main themes with corresponding subthemes were identified, followed by an underlying theme: Genetic risk: An underlying layer of complexity. The first theme, Balancing competing demands, describes the challenges involved when attempting to attend to conflicting needs within the family. Theme 2, Needing a shoulder to lean on, covers participants’ feelings of loneliness and their need to be seen by others, whereas Theme 3, Restoring and building strength, encompasses coping strategies used by caregivers to protect themselves and their children from potential negative experiences. The underlying theme describes how the genetic aspect of the disease permeates the participants’ experiences across all other themes.

Support providers may be unaware of the extensive repercussions HD can have on a family. Acknowledging the central role of partners without HD and their risk of psychological distress is crucial. Exhausted partners may struggle to support their children, which may lead to childhoods overshadowed by HD. For family members to prioritise their own needs, tailored support must be set in place for parents with HD.

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