Family perspectives in lynch syndrome becoming a family at risk, patterns of communication and influence on relations

Hereditary Cancer in Clinical Practice

Christina Carlsson¹  Mef Nilbert²  Katarina Bartuma³ 

[1] Department of Oncology, Barngatan. 2b, Lund University, 221 85, Lund, Sweden;Clinical Research Centre, Hvidovre University Hospital, Copenhagen University, Hvidovre, Denmark;Department of Oncology, Institute of Clinical Sciences, Skane University Hospital, Lund University, Lund, Sweden

关键词: Qualitative analysis;    Lynch syndrome;    Communication;    Relations;    Family;   

Others  :  806458
DOI  :  10.1186/1897-4287-10-6

 received in 2012-03-27, accepted in 2012-05-10,  发布年份 2012

【 摘 要 】

Background

A growing number of individuals are diagnosed with hereditary cancer. Though increased levels of anxiety and depression have been demonstrated around the time of genetic counselling, most individuals handle life at increased risk well. Data have, however, been collected on individual basis, which led us to focus on family perspectives of hereditary cancer.

Methods

Lynch syndrome represents a major type of hereditary colorectal and gynaecological cancer. We preformed open-ended interviews with 27 informants from 9 Lynch syndrome families. Inductive content analysis revealed three major themes: transition to a risk family, patterns of communication and influence on family relations and individual roles.

Results

Family members described how learning about Lynch syndrome shifted focus from daily issues to concerns about cancer. Changes in communication related to difficulties in talking to children about heredity and informing new family members and distant relatives about an increased risk of cancer. Influence on relations was exemplified by family members taking on different roles, e.g. females often being responsible for coordinating information about heredity and providing support. Families in which members had experienced cancer at young age typically informed children soon after learning about heredity and at young age, whereas families with experience of cancer at higher age postponed information and thereby also genetic counselling.

Conclusions

Three major family perspectives are described in Lynch syndrome families; becoming a risk family, patterns of communication and influence on family relations. Since these issues are central, our findings suggests that such family perspectives should be considered during genetic counselling in order to contribute to information spread, help family members cope with the increased risk, and motivate family members at risk to undergo surveillance.

【 授权许可】

   
2012 Bartuma et al.; licensee BioMed Central Ltd.

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