Affiliations: [a] Division of Evolution and Genomic Sciences, School of Biological Science, University of Manchester, Manchester, UK
| [b] Manchester Centre for Genomic Medicine, St Mary’s Hospital, Manchester University Hospitals NHS Foundation Trust, Manchester Academic Health Science Centre, UK
| [c] Department of Psychology, Babeş-Bolyai University, Cluj-Napoca, Romania
| [d] Leeds Family Therapy and Research Centre, Leeds Institute of Health Sciences, Leeds University School of Medicine, University of Leeds, Leeds, UK
Correspondence:
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Correspondence to: Dr. Rhona MacLeod, Manchester Centre for Genomic Medicine, Manchester University Hospitals NHS Foundation Trust, St Mary’s Hospital, Oxford Road, Manchester M13 9WL, UK. Tel.: +00 44 0 161 276 6510; E-mail: rhona.macleod@mft.nhs.uk.
Abstract: Background:Predictive testing for Huntington’s disease (HD) has been available for individuals at risk of HD by direct mutation analysis since 1993. International Predictive test guidelines recommend that support is offered following the result regardless of test outcome. However, there is lack of an evidence base regarding what this support should look like and how it might work in practice. Objective:A service improvement initiative looked at the feasibility of offering a narrative group session co-facilitated by a genetic counsellor and clinical psychologist, to individuals who had tested mutation negative for HD. The narrative session was evaluated from the perspective of group participants. Methods:Individuals who tested mutation negative at a genetic centre in the North of England over a 5-year period were invited to attend a narrative group session. 52 people were contacted and 9 people agreed to participate. Participants completed standardised questionnaires (PHQ-9 and GAD-7) before and after the session and a detailed written evaluation. Participants’ comments were analysed thematically. Results:Participants were overwhelmingly positive about the narrative session finding it a safe and enjoyable way to explore difficult life experiences. Reported benefits included feeling less isolated, being inspired by other people’s stories and connecting as a group. All 9 participants said they would recommend the narrative session to anyone impacted by HD. Conclusions:The narrative group session was considered an interesting and useful approach to facilitating adaptation following a negative predictive test result for HD.
Keywords: Huntington’s disease, narrative, predictive testing, service evaluation
