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A Genetic Counseling Intervention to Facilitate Family Communication About Inherited Conditions
Author(s) -
Gaff Clara,
Hodgson Jan
Publication year - 2014
Publication title -
journal of genetic counseling
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.867
H-Index - 52
eISSN - 1573-3599
pISSN - 1059-7700
DOI - 10.1007/s10897-014-9696-5
Subject(s) - genetic counseling , intervention (counseling) , medicine , randomized controlled trial , genetic testing , consistency (knowledge bases) , family medicine , psychology , nursing , medical education , computer science , genetics , artificial intelligence , biology , surgery
This paper describes the development and implementation of the first intervention to facilitate family communication of genetic information based on a genetic counseling model of practice. The intervention is telephone‐based and therefore designed to complement face‐to‐face genetic counseling consultations. It was developed by firstly reviewing the literature and a model of genetic counseling practice, leading to definition of seven core principles underpinning the intervention. A counseling framework based on these principles was developed through iterative role playing and review, tested for consistency with good practice and piloted on ten study participants. It was found to be feasible to implement and consistent with good genetic counseling practice. Implementation included training of the genetic counselors who would deliver the intervention as part of a randomized controlled trial. Noteworthy deviations from good genetic counseling practice were observed, with unexpected additional insights into the ‘black box’ of genetic counseling that may have wider implications and would benefit from further investigation. The intervention is currently being evaluated in a randomized controlled trial, to assess its impact on the number of family members attending genetic services.