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

OBJECTIVE

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.

METHODS

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

RESULTS

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.

CONCLUSION

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.