Dilemmas when talking about Huntington's disease: A qualitative study of offspring and caregiver experiences in Norway

Abstract

Research provides a compelling list of reasons why offspring should be included in honest conversations about disease when the disease affects their caregivers. Despite this, we lack in-depth knowledge about how families affected by the severe and complex genetic condition Huntington's disease (HD) experience talking about the many aspects of how this disease affects their lives. This study aimed to provide an in-depth exploration of how offspring with a caregiver with HD and caregivers with a partner with HD experienced talking about disease throughout childhood. Thematic analysis was conducted with semistructured interviews of both caregivers (n = 14) and offspring (n = 36) from families affected by HD, reflecting both current and past experiences. In addition to highlighting the many needs offspring have for knowledge and conversation about the disease with their caregivers, our findings also show that a variety of dilemmas can follow these conversations, including when to talk, what to say, how often HD should be talked about on a day-to-day basis, and whether to share disease-related information with others outside the family. The findings show the complexity of talking with offspring about HD. A difficult task for both offspring and caregivers seemed to be finding out how to balance the many dilemmas that arise in conversations and how to use dialogue to best help offspring adapt and cope with the many challenges that can come with HD. The findings can assist health care professionals, such as genetic counselors, prepare, and guide families affected by HD in the many and complex conversations that arise about the disease, in turn helping offspring adjust and cope with their current lives or future lives affected by HD.