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“This could be me”: exploring the impact of genetic risk for Huntington’s disease young caregivers

Abstract

Huntington’s disease (HD) is a predominantly adult-onset, genetic, neurodegenerative condition. Children of affected individuals have a 50% risk of inheriting HD and often assume caregiving roles for their parent. Studies specifically focused on HD young caregivers have proposed that the genetic risk component of HD “exacerbates” the caregiving experience and identified common responsibilities, burdens, and support needs, but none have explored the relationship between the caregiving role and perception of genetic risk. In an attempt to understand this relationship, we conducted a qualitative study to explore the interaction between a young caregiver’s perception of genetic risk, the caregiving experience, and thoughts about and plans for predictive testing. Thirteen individuals between 15 and 25 years who provided care for a parent with HD were recruited from two HD youth groups and local support groups. Interviews were recorded, transcribed, and analyzed thematically. Two themes emerged: (1) caregiving and thoughts about risk and (2) caregiving and perceived opinions towards genetic testing. Our findings suggest that the genetic risk colors the caregiving experience by evoking feelings about the future and a potential diagnosis of HD, in addition to impacting plans for predictive testing. Genetic counselors can use these findings to inform their understanding of caregiver experiences, which can aid them when helping patients explore their motivations for testing during a genetic counseling session. Future studies should explore the extent to which health care providers acknowledge the work of young caregivers in the home and provide support to these individuals.

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Acknowledgments

This research project was conducted to fulfill a degree requirement and as part of training program in Human Genetics and Genetic Counseling at Stanford University School of Medicine. We thank the Huntington’s Disease Youth Organization (HDYO) and the Huntington’s Disease Society of America (HDSA) National Youth Alliance (NYA) for their support and assistance with the recruitment of participants. Chandler Swope of HDYO and Anne Lesserman of HDSA were instrumental in the recruitment process. We thank Aiste Narkeviciute for her help with data analysis. We are also grateful for the young people who participated in interviews for this study and many others who expressed their interest—their stories should be shared, as they exemplify immense strength and courage.

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Correspondence to Danielle S. Dondanville.

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Study with human subjects

This project was approved by the Institutional Review Board of Stanford University. All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2005 (5). Informed consent was obtained from all patients for being included in this study.

Conflict of interest

Andrea Hanson-Kahn facilitates a support group for individuals with HD for which she receives a stipend from the HDSA. Authors Danielle S. Dondanville, Joanna H. Fanos, Melinda S. Kavanaugh, and Carly E. Siskind declare that they have no conflict of interest.

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Dondanville, D.S., Hanson-Kahn, A.K., Kavanaugh, M.S. et al. “This could be me”: exploring the impact of genetic risk for Huntington’s disease young caregivers. J Community Genet 10, 291–302 (2019). https://doi.org/10.1007/s12687-018-0395-z

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Keywords

  • Young caregiver
  • Young carer
  • Huntington’s disease
  • Genetic risk
  • Genetic counseling
  • Predictive testing