"I hope that it's okay for everybody" : exploring understanding of Neural Cell Transplantation (NCT) as an intervention for Huntington's Disease (HD) : an interpretative phenomenological analysis
Cardiff University, 2022
Online
Hochschulschrift
Zugriff:
Background: Huntington's Disease (HD) is a debilitating and ultimately fatal progressive neurological disorder. It is a genetically inherited disease with each person affected having a 50 per cent chance of transmitting the disease to their children. At the time of writing, there is no cure. People with pre-manifest HD are due to be approached to participate in clinical trials of Neural Cell Transplantation (NCT) as a potential new therapy for the disease. This thesis sought to uncover their beliefs, concerns, and perspectives, surrounding this trial intervention, so that their insights could be available to health service decision makers and clinical trials teams. Understanding the lived experience and giving voice to people with HD is critical to the development of person-centred practice. It is important that these experiences are embedded in activities and guidelines surrounding the potential therapeutic use of NCT. Aim: To explore the lived experience of people with pre-manifest Huntington's Disease (HD) during a time when NCT is being developed as a novel potential therapy. Method: The thesis was conducted using Interpretative Phenomenological Analysis (IPA). It sought to uncover how the participants made sense of their lived experience of premanifest HD and the meaning that they attribute to NCT within the context of their own future lives. Semi-structured interview data was collected from six people with pre-manifest HD. Four of their partners were present at interview and these partners also participated. The interview data was analysed, and the discussion framed using Ashworth's (2015) Lifeworld model. Findings: The thesis found that participants view HD as a pervasive disease which impacts on multiple dimensions of their lifeworld, beyond physical and cognitive health. However, NCT appears to provide a sense of hope that pervasiveness of HD can potentially be alleviated, and sense of agency restored. However, caution needs to be maintained in creating a sense of over optimism with regard to the benefits of NCT. The thesis also uncovered how people with pre-manifest HD form Secret Circles which can incorporate Healthcare and Researchers Workers (HRs) and, it suggested that, if HRs are trusted enough to be a member of the circle, then this can facilitate engagement with research amongst people with premanifest HD.
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"I hope that it's okay for everybody" : exploring understanding of Neural Cell Transplantation (NCT) as an intervention for Huntington's Disease (HD) : an interpretative phenomenological analysis
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Autor/in / Beteiligte Person: | Hellyar, Richard |
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Veröffentlichung: | Cardiff University, 2022 |
Medientyp: | Hochschulschrift |
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