Communicating inherited genetic risk between parent and child: a meta-thematic synthesis

Abstract

Objectives: Communicating genetic risk is a distressing process for families affected by inherited genetic conditions. This systematic review identifies and explores the challenges faced by parents and their (non)affected or at risk children caused by the (non)disclosure of genetic risk information.

Design: Qualitative meta-synthesis and thematic analysis.

Data sources: Ovid databases; Ovid 'in progress', British Nursing Index, Embase, Medline and Psychinfo were combined with searches of EBSCOhost databases; CINAHL and ERIC and Web of science and ZETOC databases using truncations of communication, chronic illness and disease and words relating to family with specific genetic conditions; Cystic Fibrosis, Duchenne Muscular Dystrophy, Familial Adenomatous Polyposis, Hereditary Non-polyposis Colorectal Cancer, Huntington's Disease, Neurofibromatosis and Sickle Cell Anaemia. This was augmented with free Internet and hand searches and an exploration of the bibliographies of all included papers.

Review method: All papers were quality assessed to ascertain their research quality and methodological rigour.

Results: A total of 2033 citations were retrieved. Following the removal of duplicates, irrelevant articles and the application of an inclusion criterion, 12 articles remained. A further three papers were omitted due to poor quality leaving nine papers which focussed on the disclosure of genetic information between parent and child (<18 years). Eight papers were qualitative in design and one used a mixed method approach. Thematic synthesis produced four themes that inform the structure of the paper; disclosure, emotions involved in disclosure, desired disclosure and recommendations.

Conclusion: Disclosure of genetic risk information within families is a highly complex and affective process often resulting in delayed disclosure. This can lead to increased family tensions generated by misunderstanding, blame and secrecy. Early, age appropriate disclosure can better prepare children for future considerations such as care planning and reproductive decision-making. It also contributes to effective coping strategies that promote enhanced adaptation and emotional well being. Early disclosure also reduces parental anxieties concerning disclosure from an unwitting source. Research shows that children and young people want their parents to engage in open and honest discussions about the genetic condition. Therefore to help facilitate effective family communication health professionals should provide family centred care and better emotional and informational support.