How communication of genetic information within the family is addressed in genetic counselling: a systematic review of research evidence

Mendes, Álvaro, Paneque, Milena, Sousa, Liliana, Clarke, Angus John ORCID: https://orcid.org/0000-0002-1200-9286 and Sequeiros, Jorge 2016. How communication of genetic information within the family is addressed in genetic counselling: a systematic review of research evidence. European Journal of Human Genetics 24 (3) , pp. 315-325. 10.1038/ejhg.2015.174

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Abstract

Supporting consultands to communicate risk information with their relatives is key to obtaining the full benefits of genetic health care. To understand how health-care professionals address this issue in clinical practice and what interventions are used specifically to assist consultands in their communication of genetic information to appropriate relatives, we conducted a systematic review. Four electronic databases and four subject-specific journals were searched for papers published, in English, between January 1997 and May 2014. Of 2926 papers identified initially, 14 papers met the inclusion criteria for the review and were heterogeneous in design, setting and methods. Thematic data analysis has shown that dissemination of information within families is actively encouraged and supported by professionals. Three overarching themes emerged: (1) direct contact from genetic services: sending letters to relatives of mutation carriers; (2) professionals' encouragement of initially reluctant consultands to share relevant information with at-risk relatives and (3) assisting consultands in communicating genetic information to their at-risk relatives, which included as subthemes (i) psychoeducational guidance and (ii) written information aids. Findings suggest that professionals' practice and interventions are predicated on the need to proactively encourage family communication. We discuss this in the context of what guidance of consultands by professionals might be appropriate, as best practices to facilitate family communication, and of the limits to non-directiveness in genetic counselling.

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Medicine
Publisher:	PubMed
ISSN:	1018-4813
Date of First Compliant Deposit:	12 February 2018
Date of Acceptance:	3 July 2015
Last Modified:	16 Nov 2024 10:00
URI:	https://orca.cardiff.ac.uk/id/eprint/103190

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