IMPROVING FOLLOW-UP AFTER PREDICTIVE TESTING IN HUNTINGTON'S DISEASE: EVALUATING A NARRATIVE GROUP SESSION IN A GENETIC COUNSELLING CLINIC

Background Recently updated Huntington’s disease (HD) predictive testing guidelines emphasise the responsibility of clinicians to facilitate emotional support following testing, regardless of the result. Yet models of post-test counselling are poorly explored, with little investigation of approaches that might aid in tackling the uncertainties and ever-changing emotional challenges of living alongside HD. Moreover, it is difficult to envisage how these might be best delivered in a Regional Genetics clinical service. Aims The aim was to evaluate the integration of a narrative therapy approach to genetic counselling, by inductively exploring participants’ experiences of the session. Methods In this pilot project, a genetic counsellor (RM) and clinical psychologist (MFD) developed group sessions using narrative practices. These were offered to individuals following HD predictive testing. Observations, evaluation forms, and telephone interviews were used in data collection. Qualitative data were analysed using a thematic framework approach. Results Participant responses were overwhelmingly positive, emphasising the importance of a specifically arranged time and space to share their experiences with others in a ‘safe’ environment. This was typically the first time participants had spoken openly with someone in their situation. The facilitation of discussion, with structured activity and enforced reflection, was particularly valued in helping participants to evaluate their current strengths and consider coping mechanisms for the future.