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Children and Adolescents Providing Care to a Parent with Huntington’s Disease: Disease Symptoms, Caregiving Tasks and Young Carer Well-Being

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Abstract

Background

Over 30,000 people in the U.S. have Huntington’s disease (HD), a disorder with numerous complicated, long-lasting and stigmatizing symptoms. Caregiving typically falls to the family, yet little is known about the caregiving experience of children and adolescents in the home.

Objective

Guided by the stress process model, this exploratory study sought to describe children and adolescents who care for a parent with HD and their caregiving experience, by detailing previously unknown relationships between caregiving, parent/child conflict, school problems, and psychological well-being of child/adolescent caregivers.

Methods

This cross-sectional study used semi-structured interviews with a purposive sample of 40 children and adolescents, aged 12–20, who care for a parent with HD. Data was analyzed using descriptive and correlational statistics. Measures included the Children’s’ Depression Inventory, The Conflict Behavior Questionnaire, and the Multidimensional Assessment of Caring Activities.

Results

Study participants have substantial caregiving responsibilities (>11), with half providing personal care to a parent. The majority experienced school problems and conflict with parents (60 and 92 % respectively). Caregiving tasks were associated with problems with school and conflict with the ill parent. Furthermore, parental symptoms were associated with poor psychological wellbeing, parental conflict, and school problems for the caregivers.

Conclusion

Children and adolescents are involved in numerous tasks and describe difficulties with their daily life and well-being. Results highlight the need for the development of support services for caregivers, as well best care practices for problematic HD symptoms. Study outcomes address minimizing the potential for negative caregiving experiences of these vulnerable caregivers.

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Acknowledgments

This study was funded by a dissertation grant through the Fahs-Beck fund for Research and Experimentation. The author would like to gratefully acknowledge the amazing and generous children and adolescents who gave of their time to participate in this study and share their stories.

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Authors and Affiliations

  1. Helen Bader School of Social Welfare, University of Wisconsin-Milwaukee, 2400 E. Hartford Ave., Enderis Hall Rm 1045, Milwaukee, WI, 53201, USA

    Melinda S. Kavanaugh

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  1. Melinda S. Kavanaugh
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Correspondence to Melinda S. Kavanaugh.

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S. Kavanaugh, M. Children and Adolescents Providing Care to a Parent with Huntington’s Disease: Disease Symptoms, Caregiving Tasks and Young Carer Well-Being. Child Youth Care Forum 43, 675–690 (2014). https://doi.org/10.1007/s10566-014-9258-x

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