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"We are not a typical family anymore": Exploring the experiences and support needs of fathers of children with Fragile X syndrome in Australia.
Luermans, Jacintha; Fleming, Jane; O'Shea, Rosie; Barlow-Stewart, Kristine; Palmer, Elizabeth Emma; Leffler, Melanie.
Afiliación
  • Luermans J; Faculty of Medicine and Health, Northern Clinical School, University of Sydney, St Leonards, New South Wales, Australia.
  • Fleming J; Faculty of Medicine and Health, Northern Clinical School, University of Sydney, St Leonards, New South Wales, Australia.
  • O'Shea R; Faculty of Medicine and Health, Northern Clinical School, University of Sydney, St Leonards, New South Wales, Australia.
  • Barlow-Stewart K; Faculty of Medicine and Health, Northern Clinical School, University of Sydney, St Leonards, New South Wales, Australia.
  • Palmer EE; Discipline of Paediatrics and Child Health, Faculty of Medicine and Health, University of New South Wales, Sydney, New South Wales, Australia.
  • Leffler M; Sydney Children's Hospitals Network, Sydney, New South Wales, Australia.
Am J Med Genet A ; 194(4): e63470, 2024 Apr.
Article en En | MEDLINE | ID: mdl-37974553
A diagnosis of the X-linked condition Fragile X syndrome (FXS) in a child commonly reveals the mother's carrier status. Previous research focused on the genetic counseling process for the child and maternal family, despite calls for more research on the support needs of fathers. This study explored experiences and support needs of fathers at least 1 year after their child's FXS diagnosis to understand barriers and enablers and optimize health outcomes for the family. In-depth interviews were conducted with 11 fathers recruited through the Australian Genetics of Learning Disability Service and the Fragile X Association. Deidentified transcripts were analyzed using thematic analysis guided by an inductive approach. Four themes emerged: (1) making life easier through understanding-yesterday and today, (2) the path to a new normal-today and tomorrow, (3) seeking information and support, and (4) what men want. Fathers reported diagnostic odysseys, postdiagnostic grief, and challenges adjusting. They highlighted difficulties in understanding their child's unique behaviors and needs, responding to their partner's psychological support needs, planning for their child's future, and navigating complex health and disability systems. Participants suggested health professionals facilitate father-to-father support and psychological counseling. These findings highlight the unmet needs of fathers and suggest that a strengths-based approach is critically important given the recognized mental health impact.
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Texto completo: 1 Colección: 01-internacional Banco de datos: MEDLINE Asunto principal: Personas con Discapacidad / Síndrome del Cromosoma X Frágil Límite: Child / Humans / Male País/Región como asunto: Oceania Idioma: En Revista: Am J Med Genet A Asunto de la revista: GENETICA MEDICA Año: 2024 Tipo del documento: Article País de afiliación: Australia

Texto completo: 1 Colección: 01-internacional Banco de datos: MEDLINE Asunto principal: Personas con Discapacidad / Síndrome del Cromosoma X Frágil Límite: Child / Humans / Male País/Región como asunto: Oceania Idioma: En Revista: Am J Med Genet A Asunto de la revista: GENETICA MEDICA Año: 2024 Tipo del documento: Article País de afiliación: Australia