Fahy, Neil Patrick;
(2022)
The experience of ‘at-risk’ status for genetic variant frontotemporal dementia (GvFTD) and its impact on reproductive decision-making: A qualitative study.
Doctoral thesis (D.Clin.Psy), UCL (University College London).
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Abstract
Genetic variant FTD (GvFTD) is genetically heritable, autosomal dominant neurodegenerative disorder. Though heritability of GvFTD is well understood, there is little research exploring the experience of those at risk for GvFTD. This thesis aims to explore the relationship between GvFTD risk and reproductive decision-making, and its connection with earlier experiences with FTD-symptomatic relatives. Part 1 details a systematic review of literature concerning reproductive decision-making in Huntington's Disease (HD), a similar neurodegenerative disorder. 25 studies were included in the review. Findings outline reproductive intentions in HD-risk population, views on assistive technologies, and reproductive outcomes. Findings suggest reproductive decision-making in the context of genetic risk is a complex, challenging process, involving multiple decisions and emotional difficulties, with at-risk individuals employ several strategies to navigate. Further research is required on outcomes of the total HD-risk population, and to develop a psychological model of reproductive decision-making. Part 2 presents a qualitative study exploring reproductive decision-making among those at risk for GvFTD, including parents and non-parents. Thematic analysis of 13 interviews was conducted, identifying six main themes, covering fears of participants about repetition of their own earlier experiences and strategies to avoid this, responses to genetic risk in reproductive decision-making, discussing risk with children, timing and other influencing factors. Findings emphasise future caring burden as a major concern for at-risk individuals. Part 3 involves discussion of the reflexive process of research, including the positionality of the researcher, its effect on research, and outline of decision-making in response to methodological questions and issues.
| Type: | Thesis (Doctoral) |
|---|---|
| Qualification: | D.Clin.Psy |
| Title: | The experience of ‘at-risk’ status for genetic variant frontotemporal dementia (GvFTD) and its impact on reproductive decision-making: A qualitative study |
| Open access status: | An open access version is available from UCL Discovery |
| Language: | English |
| Additional information: | Copyright © The Author 2022. 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 > 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 UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10155802 |
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