Abstract
Background
Due to the progressive deterioration of motor, cognitive, and psychological function, individuals with Huntington’s disease (HD) rely heavily on family caregivers, including children in the home. This “young carer” role can result in responsibilities that are inappropriate for the child’s age and abilities. Also referred to as parentification, this experience can result in both positive and negative outcomes for the child, spanning multiple domains of health and well-being.
Objective
To explore the manifestation of parentification among young carers of a parent with HD.
Method
Directed content analysis, guided by a literature-derived framework of parentification, was utilized for this qualitative study. Participants included 28 young carers (mean age of 16.6 (± 2.6)) who self-identified as engaging in caregiving activities related to HD with the majority providing care for 1–3 years (53.6%)- averaging 25.4 h of care per week.
Results
Three main themes with subthemes emerged: (1) being a young carer [perceptions of caregiving, learning to be a caregiver, caregiver burden, coping], (2) living with a new normal (school and friends, feeling unheard/alone, support system, personal growth), and (3) facing HD as a young carer (stigma and isolation, parent/child relationship, end of life, genetic risk).
Conclusions
Young carers in the context of HD experience many attributes and consequences of parentification generally present among young carers of ill parents. However, HD specific findings emerged from this study that can be used to inform clinicians and direct future research aimed at guiding policy and developing tailored support services.