“It’d be nice if someone asked me how I was doing. Like, ‘cause I will have an answer”: exploring support needs of young carers of a parent with Huntington’s disease

Abstract

This study explores the support needs of an isolated and little known caregiver population: children and adolescents aged 12–20, who provide care to a parent with Huntington’s disease (HD), often referred to as “young carers.” Stigmatizing symptoms of HD, including depression, personality change, psychosis, and involuntary movements, often leave family caregivers isolated with little support. Increasing attention is paid to the support of adult caregivers, yet little attention has been given to young carers in the family, including support needs they describe as important. Individual interviews were conducted with 40 young carers from 18 states, recruited through the Huntington’s Disease Society of America. Participants were asked two open-ended questions: (1) what things can people do to help you care for your mom/dad? (2) what things do you need to help you care for your mom/dad that you do not currently have? Content analysis was used to analyze the interview transcripts. Data analysis elicited three main categories associated with support needs: (1) instrumental support, (2) emotional support, and (3) personal needs. Each category detailed the need for friends to be understanding, others to show care for the caregiver and for the young carers to receive assistance with caregiving tasks. Furthermore, they stated a need for information and advice about caregiving, and the creation of outlets, such as support groups, to help them feel less alone and to normalize their situation. With little information on HD and minimal support outlets, many study participants lack resources, which exacerbates their isolation and vulnerability to negative impacts of caregiving. Thus, the results of this study provide clear implications for social work and health care professionals in designing support programs and services targeted to young carers of a parent with HD.

Keywords:

• young carer
• Huntington’s disease
• social support
• young caregiver
• family caregiver

Acknowledgements

The authors would like to gratefully acknowledge the families and young carers who gave of their time to participate in this study.