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J6 Parents’ perspective on the challenges of disclosing huntington’s disease information to their at risk children
  1. Clare A Gibbons1,2,
  2. Wendy Medved3,
  3. Wendy S Meschino1,4,
  4. Arlette Lefebvre5,6,
  5. Wai Lun Alan Fung6,7,
  6. Jennifer Semotok2
  1. 1Genetics Program, North York General Hospital, Toronto, Ontario, Canada
  2. 2Department of Molecular Genetics, University of Toronto, Toronto, Ontario, Canada
  3. 3Canadian Institute for Health Information, Toronto, Ontario, Canada
  4. 4Department of Paediatrics, University of Toronto, Toronto, Ontario, Canada
  5. 5Hospital for Sick Children, Toronto, Ontario, Canada
  6. 6Department of Psychiatry, North York General Hospital, Toronto, Ontario, Canada
  7. 7Department of Psychiatry, University of Toronto, Toronto, Ontario, Canada

Abstract

Background Parents with children at risk for HD must decide when and how to disclose HD information to their children.

Aims To explore parents’ perceived challenges and plans for disclosure to their children.

Methods Semi-structured interviews were conducted with 11 parents of children (ages 6 to 21) at risk for HD. The constant comparative method was used for qualitative data analysis.

Results Parents indicated that their readiness to disclose was guided by the child’s level of comprehension, maturity, and personality. Disclosure was also influenced by the child’s exposure to someone with HD symptoms and the child asking questions related to HD. Most parents felt that gradual disclosure was best, especially if the parent was manifesting symptoms. Parents balanced their desire to protect the child versus the potential negative impact of withholding information. Parents were concerned that the child might worry about the affected parent’s health causing a negative impact on the parent-child relationship. They were also concerned about the child’s reaction to learning about their own risk to develop HD and the chance that they might perceive themselves as sick or dying. Most parents’ plans for disclosure included the message of hope and promise of research and progress. In some cases, the need to provide reassurance to the child caused some distortion of the implications of inheriting HD.

Conclusion Parents often seek professional advice on the best approach to disclose HD information. Parents should be encouraged to assess their specific situation guided by the themes identified in this study.

  • Disclosure of Huntington’s disease information
  • at risk children

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