G03 Evaluating a genetic counselling narrative session for people living with the hd gene fault: an interpretative phenomenological analysis. (September 2018)

• Record Type: Journal Article
• Authors: Spiers, Johanna; Macleod, Rhona; Ferrer-Duch, Mariangels; Moldovan, Ramona; Roche, Jay; Smith, Jonathan A
• Is Part Of: Journal of neurology, neurosurgery and psychiatry. Volume 89(2018)Supplement 1
• Page Start: A66
• Page End: A67
• Publication Date: 2018-09
• Subjects: narrative -- genetic counselling -- predictive test; Neurology -- Periodicals; Nervous system -- Surgery -- Periodicals; Psychiatry -- Periodicals; 616.8
• DOI: 10.1136/jnnp-2018-EHDN.177
• Languages: English
• ISSNs: 0022-3050

Abstract

Abstract : Background: The adjustment process following predictive testing for Huntington's disease can be variable, with some impacts experienced years after the result. Psychological interventions, particularly those focused on acceptance-based, systemic work such as narrative therapy, may be useful for people who have chosen to test whilst asymptomatic. We designed a genetic counselling narrative session to boost resilience in people who had been tested for the HD gene fault. Aims: The study aimed to evaluate this narrative session. Methods/techniques: Twelve participants living with the HD gene fault who attended the narrative session were interviewed about their experiences of that session. Their transcripts were analysed using Interpretative Phenomenological Analysis (IPA), a psychological method which involves a deep reading of participants' language to look for points of convergence and divergence within their experiences. Results/outcomes: Three major themes arose from analysis of the data. In the power of the group, participants described the benefits of meeting and feeling empathy with other people living with the HD gene fault, the vital peer support element of the session and the beneficial comparisons they were able to make between themselves and other group members. The subsequent impact of the session demonstrated that the session boosted the mood of many participants, enabled higher levels of disclosure of HD status, and resulted in a sense of future freedom which the knowledge of impending HD had previously restricted. The final theme, another voice: the experience of two participants for whom the session was less beneficial, outlined the experiences of the minority group of participants for whom the session didn't feel relevant. Conclusions: The session had a powerful, positive impact on the majority of participants, enabling them to bond with other people living with the HD gene fault, disclose their status to more friends and family, and think more positively about the future. We recommend that other HD centres roll out similar sessions.