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

PLUMRIDGE, G., METCALFE, Alison, COAD, J. and GILL, Paramjit (2010). Family communication about genetic risk information: Particular issues for Duchenne muscular dystrophy. American Journal of Medical Genetics. Part A, 152A (5), 1225-1232.

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Official URL: https://onlinelibrary.wiley.com/doi/abs/10.1002/aj...
Link to published version:: https://doi.org/10.1002/ajmg.a.33364
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    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.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.

    Item Type: Article
    Research Institute, Centre or Group - Does NOT include content added after October 2018: Centre for Health and Social Care Research
    Identification Number: https://doi.org/10.1002/ajmg.a.33364
    Page Range: 1225-1232
    Depositing User: Justine Gavin
    Date Deposited: 17 Jul 2018 15:25
    Last Modified: 01 Oct 2018 16:15
    URI: http://shura.shu.ac.uk/id/eprint/22015

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