Open communication of Duchenne muscular dystrophy facilitates disclosure process by parents to unaffected siblings. Issue 1 (19th July 2020)

• Record Type: Journal Article
• Authors: Sulmonte, Laura A.G.; Bisordi, Katharine; Ulm, Elizabeth; Nusbaum, Rachel
• Is Part Of: Journal of genetic counseling. Volume 30:Issue 1(2021)
• Page Start: 246
• Page End: 256
• Publication Date: 2020-07-19
• Subjects: communication -- disclosure -- Duchenne muscular dystrophy -- parents -- unaffected siblings; Genetic counseling -- Periodicals; 616.042
• DOI: 10.1002/jgc4.1315
• Languages: English
• ISSNs: 1059-7700

Abstract

Abstract: Duchenne muscular dystrophy (DMD) is a progressive childhood onset neuromuscular disease with no known cure. There is extensive literature about the impact of a diagnosis on the psychosocial well‐being of unaffected siblings, with a need for additional research to provide information about optimal ways to disclose this information to unaffected children. We sought to explore the parental experiences of disclosing a sibling's diagnosis of DMD to unaffected children who were age 8–17 years old either at the time of their sibling's diagnosis or presently. Parents were recruited through Maryland Muscular Dystrophy Association, Parent Project Muscular Dystrophy, and Cincinnati Children's Hospital Medical Center Neuromuscular Center. An interview guide, rooted in family communication, was created to incorporate themes and topics found in literature specific to DMD and disclosure to unaffected siblings. We qualitatively explored these experiences through semi‐structured interviews and performed thematic analysis using a coding system to identify overarching themes and subthemes. Several main themes regarding challenges to the disclosure process emerged. We identified the following themes in procedural aspects of disclosure: lack of provider support, importance of the DMD community, and open and gradual timeline of disclosure. Under emotional experiences, we identified these themes: overwhelming nature, elements of surprise disclosure, and balancing parental and sibling needs. Most questions from unaffected siblings related to procedural elements of care such as treatments and equipment. Additional unanticipated themes emerged that may contribute to the knowledge of family culture surrounding DMD: the complex role of Facebook as a family resource, deferring carrier testing for siblings, and inclusion of DMD in school projects. While the process of disclosure is complicated by a variety of factors such as lack of provider support and overwhelming emotional burden, families highlight the importance of open communication in discussion with unaffected children.