Depression in children providing care to a parent with Huntington's disease: Caregiving stressors, strains, and the role of social support

This study provides insight into the lives of children and adolescents ages 12-20 who provide care to a parent with Huntington's disease (HD). The stigmatizing symptoms of this disorder create unique challenges that often contribute to isolating these families and little attention has been given to the experiences and needs of children and adolescents who care for a parent with HD. Guided by the stress process model, this study sought to: 1) describe HD young carers and their caregiving experience, 2) examine the effects of caregiving stressors, strains, and social support on depression in HD young carers, and 3) identify support needs of HD young carers. Semi-structured interviews were conducted with 40 young carers aged 12-20 from 18 states. Study participants were accessed through the Huntington's Disease Society of America.;A large percentage of youth has substantial caregiving responsibilities (i.e., stressors), with half providing personal care to a parent. The majority experienced secondary role strains including school problems and conflict with parents (60% and 92% respectively). Caregiving tasks were associated with problems with school and conflict with the ill parent, and there was a clear relationship between problems with school and depression. Path analysis revealed the role of low emotional social support in the path from high conflict to high depression, and between high school problems and high depression, suggesting the potential important role of emotional social support in lessening the effect of stressors and strains on depression. Eighty five percent of the 40 HD young carers in the current study reported some form of unmet support needs, expressing the need for other people to assist in caregiving tasks, and more understanding and support in their caregiving experience. Results provide clear implications for social work practice, both clinical and school based, as well as social policy targeted to provide better care to chronically ill parents with children in the home, thereby lessening the caregiving burden, and improving the quality of life of HD young carers.