Open communication of Duchenne muscular dystrophy facilitates disclosure process by parents to unaffected siblings.

Journal of Genetic Counseling
Laura A G SulmonteRachel Nusbaum

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 pr...Continue Reading

References

Mar 1, 1997·Journal of Genetic Counseling·Diane Beeson
Mar 28, 2009·The American Journal of Nursing·Agatha M GalloKathleen A Knafl
Sep 17, 2009·Journal of Empirical Research on Human Research Ethics : JERHRE·Rebecca SchafferArlene M Davis
Oct 24, 2009·European Journal of Paediatric Neurology : EJPN : Official Journal of the European Paediatric Neurology Society·Joy ReadM Elena Garralda
Apr 29, 2010·American Journal of Medical Genetics. Part a·Gillian PlumridgeParamjit Gill
Aug 24, 2010·European Journal of Paediatric Neurology : EJPN : Official Journal of the European Paediatric Neurology Society·Joy ReadM Elena Garralda
Feb 22, 2011·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Gillian PlumridgeParamjit Gill
Apr 20, 2011·Journal of Genetic Counseling·Gillian PlumridgeParamjit Gill
Jul 26, 2014·Journal of Intellectual Disability Research : JIDR·J GoodwinL E Campbell
Aug 7, 2014·Health & Social Work·Priya Treesa ThomasAtchayaram Nalini
Oct 19, 2014·International Journal of Qualitative Studies on Health and Well-being·Virginia Braun, Victoria Clarke
Feb 19, 2015·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Susan Kirk, Linda Milnes
Jun 19, 2015·Human Gene Therapy. Clinical Development
Oct 17, 2016·Journal of Pediatric Health Care : Official Publication of National Association of Pediatric Nurse Associates & Practitioners·Roxanna M Bendixen, Amy Houtrow

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