The role of support groups in facilitating families in coping with a genetic condition and in discussion of genetic risk information

Background: Giving children and young people information about genetic conditions and associated risk has been shown to be important to their identity, coping and decision making. Parents, however, find talking to their children difficult, and support from health professionals is often not available to them. Objective: To explore the role of support groups in family coping, and in assisting parents' communication about risk with children in families affected by an inherited genetic condition. Methods: Semi-structured interviews analysed using grounded theory and informed by models focusing on aspects of family communication. Participants Affected and unaffected children and their parents, from families affected by one of six genetic conditions, that represent different patterns of inheritance, and variations in age of onset, life expectancy and impact on families. Results: Parents often sought support they did not receive elsewhere from support groups. They identified benefits, but also potential disadvantages to this involvement. These related to the specific condition and also whether groups were run solely by parents or had professional input. Support groups rarely helped directly with family communication, but attendance often stimulated family discussion, and they provided information that improved parents' confidence in discussing the condition. Conclusions: Support groups should be seen only as additional to the support offered by health and social care professionals. An increased understanding of the role of support groups in assisting families with genetic conditions has been highlighted, but further work is needed to explore more fully how this may be made more sustainable and far-reaching.