F06\u2005‘Where do we go from here?’: A meta-synthesis of qualitative literature examining the lived experience of huntington’s disease

Abstract

ObjectivesTo examine the experiences of people with Huntington’s Disease (HD) in qualitative literature;to identify areas of depth as well as gaps in our extant knowledge base.MethodsA meta synthesis of qualitative literature was conducted using systematic searches in Scopus, Medline, Web of Science and CINAHL. The search was limited to studies published in English from 2000-2020.ResultsThe extensive literature search yielded 169 unique records, 42 met the inclusion criteria. Three broad themes were centred around, ‘Where do we go from here?’;(a) route to diagnosis (b) intersections with health services (c) steering through life with HD. The themes were extracted from empirical findings, scrutiny of abstracts and full text articles which included methodological designs and data collection methods.ConclusionOur knowledge of living with HD is mainly informed by clinical observations, genetic risks, and experiences of genetic testing. There is a lack of qualitative studies that explore HD non-clinical aspects, despite the pervasive functional, psychological, and social consequences to individuals, families, and communities. There are methodological limitations in current literature such that holistic impact of the disease and experiences of people with HD late stages were not well described. Qualitative longitudinal research has the potential to help us better understand the experiences of living with HD.