Exploring patients’ perceptions of a narrative group for HD
Research type
Research Study
Full title
Exploring the efficacy of narrative interventions post predictive testing for HD\n
IRAS ID
232990
Contact name
Rhona MacLeod
Contact email
Sponsor organisation
Central Manchester Foundation Trust
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
This qualitative interview study is designed to explore patients’ experiences of participating in a novel narrative group session post predictive testing for Huntington’s disease (HD). The narrative groups are being offered as a service improvement and part of the routine care offered to individuals following HD predictive testing at Manchester Centre for Genomic Medicine. Huntington’s disease (HD) is a serious late onset neurodegenerative disorder. Each child of an affected parent has a 50% risk of inheriting the condition. Individuals > 18 years and at 50% risk of HD, can choose to have a predictive test to see whether or not they have inherited the HD gene fault. Predictive testing is carried out according to published international guidelines which include a recommendation that follow up support is provided regardless of test outcome. To date there is a lack of research evidence around the type of psychological support which may benefit this group of patients. Narrative practices provide a safe space to help draw on the sometimes hidden stories of resilience in the face of HD. The narrative sessions, facilitated by a genetic counselor and clinical psychologist, are carefully structured and include an exercise from collective narrative practices, ‘The Tree of Life’. Feedback from the four groups conducted so far has been overwhelmingly positive. This prospective research study will conduct in-depth interviews with participants two weeks after taking part in a narrative group to capture their experiences and help tailor the intervention in preparation for a larger grant application to trial the intervention. The interviews will be audiotaped with consent and transcribed in preparation for analysis by the chosen method Interpretative Phenomenological Analysis (IPA). IPA is concerned with how an individual makes sense of their lived experience with respect to a particular phenomenon, in this case, the Narrative group session.\n
REC name
North East - Tyne & Wear South Research Ethics Committee
REC reference
17/NE/0290
Date of REC Opinion
5 Sep 2017
REC opinion
Favourable Opinion