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Family communication about cystic fibrosis from the mother's perspective: an exploratory study

Department of Clinical Genetics, Guy's and St Thomas' NHS Foundation Trust Guy's Hospital, London, UK, nicola.coates{at}gstt.nhs.uk

Maggie Gregory

CESAGen - ESRC Centre for Economic and Social Aspects of Genomics Cardiff University School of Social Sciences, Wales, UK

Heather Skirton

Enterprise) of the School of Nursing and Community Studies Faculty of Health and Social Work, University of Plymouth, Plymouth, UK

Clara Gaff

Genetic Health Service Victoria, Royal Children's Hospital, Parkville Victoria, Australia

Christine Patch

Clinical Genetics Department, Guys and St Thomas' NHS Foundation Trust Guy's Hospital, London, UK

Angus Clarke

Institute of Medical Genetics, University Hospital of Wales Cardiff University Wales, UK

Evelyn Parsons

Cardiff University, Wales, UK

With the advent of national newborn screening for cystic fibrosis in the UK, the communication of information within families after a diagnosis is made is important. As cystic fibrosis is a recessive genetic condition, even distant relatives may be carriers and therefore potentially at risk of having an affected child. Eight semi-structured interviews were carried out with mothers of children who were diagnosed with cystic fibrosis at around the time of birth. Thematic analysis was undertaken on interview transcripts. The interview data suggest open communication in these families with respect to first-degree relatives. Although disclosure was more selective with distant relatives, there was evidence that information was filtered to them through other family members. The main reasons for disclosure by mothers appeared to be the need for support and to allow relatives the option of carrier testing. Barriers to disclosure included lack of emotional and geographical closeness to relatives and the desire to protect relatives from unwelcome information. Health professionals may be able to assist the disclosure process by actively discussing disclosure with parents. It may also be helpful to revisit the issue of disclosure with parents after they have had some time to adjust to the diagnosis of cystic fibrosis in their child.

Key Words: family communication • genetic counselling • cystic fibrosis • risk • newborn screening

Journal of Research in Nursing, Vol. 12, No. 6, 619-634 (2007)
DOI: 10.1177/1744987107083594


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