TY - JOUR

T1 - Maintaining psychological well‐being when living at risk of Huntington's disease

T2 - An interpretative phenomenological analysis

AU - Cooper, Hollie

AU - Simpson, Jane

AU - Dale, Maria

AU - Eccles, Fiona J. R.

PY - 2025/4/30

Y1 - 2025/4/30

N2 - Living at risk of a genetically inherited disease can be a challenging experience causing psychological distress as well as the possibility of the genetic disease leading to physical health problems. Huntington's disease (HD) is a genetic, neurodegenerative condition. It causes motor dysfunction, cognitive decline and, during the progression of the disease, different psychological difficulties are common. A total of 12 participants living at risk of HD were interviewed and interpretative phenomenological analysis methodology was used to understand their experiences of maintaining psychological well‐being. This resulted in three themes: (1) “you're constantly in limbo”: living in two worlds; (2) “I have to live, just bloody live”: managing the possibility of a time‐limited lifespan; and (3) “I try and try my hardest to look past the disease”: the exhausting quest to keep living well. The findings indicated a need for improved knowledge within professional settings, such as for family doctors, counselors, and other health professionals, specific strategies that genetic counselors can use to support this group, and provision of accessible support and implementation of systemic interventions that would offer support for psychological coping strategies and communication around well‐being to the individual and their family unit. Future research could contribute to the formation of such knowledge and the provision of HD‐aligned services to help support the psychological well‐being of people living at risk of HD.

AB - Living at risk of a genetically inherited disease can be a challenging experience causing psychological distress as well as the possibility of the genetic disease leading to physical health problems. Huntington's disease (HD) is a genetic, neurodegenerative condition. It causes motor dysfunction, cognitive decline and, during the progression of the disease, different psychological difficulties are common. A total of 12 participants living at risk of HD were interviewed and interpretative phenomenological analysis methodology was used to understand their experiences of maintaining psychological well‐being. This resulted in three themes: (1) “you're constantly in limbo”: living in two worlds; (2) “I have to live, just bloody live”: managing the possibility of a time‐limited lifespan; and (3) “I try and try my hardest to look past the disease”: the exhausting quest to keep living well. The findings indicated a need for improved knowledge within professional settings, such as for family doctors, counselors, and other health professionals, specific strategies that genetic counselors can use to support this group, and provision of accessible support and implementation of systemic interventions that would offer support for psychological coping strategies and communication around well‐being to the individual and their family unit. Future research could contribute to the formation of such knowledge and the provision of HD‐aligned services to help support the psychological well‐being of people living at risk of HD.

KW - psychological well‐being

KW - qualitative

KW - lived experience

KW - Huntington's disease

KW - interpretative phenomenological analysis

U2 - 10.1002/jgc4.1965

DO - 10.1002/jgc4.1965

M3 - Journal article

C2 - 39252438

VL - 34

SP - e1965

JO - Journal of Genetic Counseling

JF - Journal of Genetic Counseling

SN - 1059-7700

IS - 2

ER -