NDLI: Family communication about genetic risk information: particular issues for Duchenne muscular dystrophy.

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Family communication about genetic risk information: particular issues for Duchenne muscular dystrophy.

Content Provider	World Health Organization (WHO)-Global Index Medicus
Author	Plumridge, Gillian Metcalfe, Alison Coad, Jane Gill, Paramjit
Description	Country affiliation: United kingdom Author Affiliation: Plumridge G ( School of Health & Population Science, University of Birmingham, Edgbaston, Birmingham, UK.)
Abstract	Open family communication about genetic conditions and associated risk is important to children's identity, coping and decision making. Parents however find talking to their children difficult and because of associated care needs and emotional reactions it can be particularly stressful in families affected by Duchenne muscular dystrophy (DMD). This article reports on the findings of a group of families affected by DMD who formed part of a larger study where adult and child members of 33 families affected by one of six genetic conditions were interviewed. Parents thought they should talk to children about a genetic condition in their family and children wanted information and open discussion. In families affected by DMD clear gender differences were identified between mothers and fathers in coping and in their roles in relation to the condition. There was a particularly close bond between mothers and affected sons. For most conditions, mothers were central to giving children information but the identified issues made this problematic in families with DMD. This resulted in affected children receiving little information about their condition at all and female siblings being unlikely to receive information about their potential carrier status until they were about 16-year old. Insight into family communication within families affected by DMD assists healthcare professionals in recognizing and meeting the particular support needs of this group of families.
File Format	HTM / HTML
ISSN	15524825
Issue Number	5
Volume Number	152A
e-ISSN	15524833
Journal	American Journal of Medical Genetics Part A
Language	English
Publisher	Wiley-Blackwell
Publisher Date	2010-05-01
Publisher Place	United States
Access Restriction	One Nation One Subscription (ONOS)
Subject Keyword	Discipline Human Discipline Genetics Communication Genetic Predisposition To Disease Muscular Dystrophy, Duchenne Genetics Adaptation, Psychological Adult Confidentiality Demography Family Female Humans Interviews As Topic Male Parent-child Relations Journal Article Research Support, Non-u.s. Gov't
Content Type	Text
Resource Type	Article
Subject	Genetics Genetics (clinical)

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