Psychological Impacts of Caregiving and the Need for Social Support in Children Providing Care to a Parent with Huntington's Disease
Purpose: Approximately 1.4 million young children under the age of 19 in the US provide some measure of care to a parent. The largely descriptive literature on these children, or “young carers” report difficulty with depression, poor school performance, and problems with peers, while receiving little to no support as caregivers. These issues may be particularly salient to one caregiving population, young carers of a parent with Huntington’s Disease (HD). Challenging symptoms of HD such as slurred speech, involuntary movements and uninhibited behavior, commonly develop in persons in their 30’s and 40’s, and contribute to stigmatization and social isolation among patients and their family members, including young carers. Minimal attention has been given to the caregiving experience of HD young carers, including psychological impacts and the role of social support. This mixed methods study sought to describe the psychological impact of caregiving on HD young carers and the level of social support they receive; while qualitatively exploring specific social support needs of these young carers.
Methods: The study sample of young carers to a parent with HD was recruited through six Midwest chapters of the Huntington’s Disease Society of America (HDSA). In-depth, semi-structured interviews were conducted with 27 young carers, (5 male, 21 female) ages 12-20. Results of the mixed methods study were obtained using linear regression and content analysis. Quantitaive study measures included a school questionnaire, the young carer checklist, the children’s depression inventory (CDI), and the child and adolescent social support scale (CASSS). Qualitative questions addressing social support needs consisted of two open ended questions asking “what can people do to help you care for your parent?” and “what do you need to care for your parent?”
Results: Descriptive data showed young carers of all ages, performed an average of 13 caregiving duties, 17 hours per week, had poor school performance, missed school activities, had little alone time, and reported high levels of depression due to caregiving duties. As hypothesized, the regression model showed low overall social support (p=.003) was a significant predictor of depression in young carers, with both low instrumental support (p=.006) and low emotional (p=.007) support equally strong predictors of depression in young carers. Content analysis elicited the need for more support from both friends and adults, including those knowledgeable in HD. Young carers specifically described their social support needs in terms of emotional (“need people to understand my experience”), and instrumental (“need someone to help me clean the house and cook meals for dad”) support.
Implications: Findings from this study suggest that the lack of social support is associated with depression in young carers. However, qualitative results provide clear avenues to lessen the psychological impact through the provision of social support, both emotional and instrumental. Social work is ideally suited to create supportive groups and opportunities to assist in the daily caregiving duties of young carers, thus lessening the psychological impact of caregiving.