Brien, Rhianna;
(2025)
Acceptability and Feasibility of a Brief, Multi-Component
Acceptance and Commitment Therapy (ACT) Intervention to
Support Those Living At Risk of Inherited Prion Diseases.
Doctoral thesis (D.Clin.Psy), UCL (University College London).
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Abstract
Aims: While the psychological impact of genetic testing for autosomal dominant neurological conditions (ADNCs) is well documented, less is known about the broader experience of living at risk, particularly for rarer, understudied conditions. This scoping review aims to map the existing literature, synthesise evidence on the psychological experience of at-risk individuals, and identify key gaps to inform future research and support. Method: Following Joanna Briggs Institute and PRISMA-ScR guidelines, a systematic search of PsycINFO, MEDLINE, and Web of Science (November 2024) identified studies exploring the psychological experience of adults (≥18 years) at risk for ADNCs. There were no restrictions on publication date or study design. Results: 24 studies, published between 1990 and 2024 , met inclusion criteria. Studies show that emotional responses to genetic risk are dynamic and shaped by personal, relational, and systemic factors. Psychological distress often intensifies during major life transitions such as family planning, witnessing a relative’s decline, or entering new relationships. Key themes included identity disruption, anticipatory grief, and coping through living fully and maintaining hope. However, the literature is limited by small, homogenous samples, an overreliance on qualitative designs, and inconsistent reporting of psychological outcomes. No longitudinal studies were identified, and only a small number of studies investigated interventions tailored to this population. Conclusions: This is the first review to systematically synthesise evidence on this topic. It underscores the fluctuating nature of psychological distress across the life course and highlights critical gaps in knowledge and care. Future research should prioritise longitudinal approaches and consider the use of control or comparison groups to better assess intervention effectiveness.
| Type: | Thesis (Doctoral) |
|---|---|
| Qualification: | D.Clin.Psy |
| Title: | Acceptability and Feasibility of a Brief, Multi-Component Acceptance and Commitment Therapy (ACT) Intervention to Support Those Living At Risk of Inherited Prion Diseases |
| Open access status: | An open access version is available from UCL Discovery |
| Language: | English |
| Additional information: | Copyright © The Author 2025. Original content in this thesis is licensed under the terms of the Creative Commons Attribution-NonCommercial 4.0 International (CC BY-NC 4.0) Licence (https://creativecommons.org/licenses/by-nc/4.0/). Any third-party copyright material present remains the property of its respective owner(s) and is licensed under its existing terms. Access may initially be restricted at the author’s request. |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10215023 |
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