Finch, Alison Claire;
(2023)
Experiences of teenage and young adult ambulatory cancer care: Community-Based Participatory Research to inform service provision.
Doctoral thesis (Ph.D), UCL (University College London).
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Abstract
Background: In 2011, the English National Health Service (NHS) introduced Ambulatory Care (AC) for Teenage and Young Adult (TYA) cancer patients, offering chemotherapy regimens and treatment that traditionally require hospitalisation on an ambulatory basis. This treatment modality is made possible using portable infusion pumps, with young people residing close to the hospital overnight. / Aims: This research set out to explore the experiences of those receiving and delivering AC: building knowledge to inform current and future services for those aged 16-24 and their families. A key aim was to understand whether refinements to the service were needed to better support young people and their companions. / Methods: Through a Community-Based Participatory Research approach, young people and companions from the TYA cancer community became co-researchers and contributed to every stage of the research process. The study design included a scoping review of the literature and consultation with health professionals. Through semi-structured, peer and photo-guided methods, 43 participants (18 young people, 13 companions and 12 staff) participated in interview conversations; participation was also a feature of data analysis. In addition, four young associate researchers took part in an evaluation of their co-researcher experience. / Findings: Ambulatory Care contributes positively to young people’s experiences of cancer treatment. It retains aspects of life that are important to young people whilst fostering their wellbeing and autonomy. Informing this is young people’s agency, with AC supporting them to feel and be agentic in their care pathway. Advance preparation, partnership working and respect for autonomy – underpinned by a clinical safety net – enables the effective operationalisation of AC. Critical to young people’s positive experience is the opportunity to be accompanied, and AC may not be feasible without a companion’s involvement. This research offers the TYA cancer community evidence to inform policy, practice and future research inquiry and proposes a series of recommendations for the further development of TYA Ambulatory Care.
| Type: | Thesis (Doctoral) |
|---|---|
| Qualification: | Ph.D |
| Title: | Experiences of teenage and young adult ambulatory cancer care: Community-Based Participatory Research to inform service provision |
| Open access status: | An open access version is available from UCL Discovery |
| Language: | English |
| Additional information: | Copyright © The Author 2023. 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 Population Health Sciences > Institute of Epidemiology and Health |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10167254 |
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