Document Detail


A family genetic risk communication framework: guiding tool development in genetics health services.
MedLine Citation:
PMID:  23319393     Owner:  NLM     Status:  PubMed-not-MEDLINE    
Abstract/OtherAbstract:
Family communication of genetic risk information is a complex process. Currently, there are no evidence-based interventions to help genetics professionals facilitate the process of disclosure within families. This study was designed to create a framework to assist in the development of tools to support patients in communicating genetic risk information to family members. A systematic review identified the factors relevant in communicating genetic risk information in families. A guiding theory for the proposed framework was selected and populated with the factors identified from the review. The review identified 112 factors of relevance. The theory of planned behaviour was selected to guide framework development, organising the framework in terms of the patient's attitudes about disclosure, perceived pressure to disclose and perceived control over disclosure. Attitudes about disclosure are influenced by a desire to protect oneself or family members, and the patient's perceptions of relevance of the information for family members, responsibility to disclose, family members' rights to information and the usefulness of communicating. Perceived pressure to disclose information is shaped by genetic professionals, family members and society. Perceived control over disclosure is affected by family relationships/dynamics, personal communication skills, the ability of the patient and family to understand the information and coping skills of the patient and family member. The family genetic risk communication framework presents a concise synthesis of the evidence on family communication of genetic information; it may be useful in creating and evaluating tools to help genetic counsellors and patients with communication issues.
Authors:
Miriam E Wiens; Brenda J Wilson; Christina Honeywell; Holly Etchegary
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Publication Detail:
Type:  Journal Article     Date:  2013-01-15
Journal Detail:
Title:  Journal of community genetics     Volume:  4     ISSN:  1868-310X     ISO Abbreviation:  J Community Genet     Publication Date:  2013 Apr 
Date Detail:
Created Date:  2013-03-12     Completed Date:  2013-03-14     Revised Date:  2013-05-31    
Medline Journal Info:
Nlm Unique ID:  101551501     Medline TA:  J Community Genet     Country:  Germany    
Other Details:
Languages:  eng     Pagination:  233-42     Citation Subset:  -    
Affiliation:
CF Health Services Group Headquarters, Department of National Defence, 1745 Alta Vista Drive, Ottawa, ON, Canada, K1A 0K6, miriam.wiens@mail.mcgill.ca.
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