Stutzin Donoso, Francisca;
(2021)
From self-management to shared management in chronic care: an empirical ethics investigation into the lived experience of chronic disease in England.
Doctoral thesis (Ph.D), UCL (University College London).
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Abstract
Even within universal health coverage systems, there are significant health inequalities caused by differences in patients’ abilities to adhere to long-term treatments, and inequalities in long-term treatment adherence are correlated with, and aggravate, existing health inequalities. To better understand the mechanisms underlying this cumulative effect of disadvantage, a qualitative empirical ethics study on the lived experience of chronic disease and long-term treatment was conducted within the National Health Service in England. Overall findings suggest that chronic diseases and long-term treatment can threaten belonging to the social world, sense of agency and self-concept or identity. Furthermore, findings also suggest that current views of long-term treatment adherence ignore the dynamism and interdependence underlying the management of chronic disease. Drawing on these findings and adopting a complex systems approach, this thesis describes adjustment to chronic disease as the ongoing effort towards balancing multiple demands to live lives people have reason to value across time. Specifying this ongoing effort contributes to identifying key psychological, social and healthcare-related challenges and injustices faced by people living with chronic disease. Wellbeing is not always best promoted by maximising treatment adherence, so patients do not and should not always prioritise long-term treatment over competing concerns and projects within their lives. Still, it is morally problematic that structural injustice puts the disadvantaged in a position in which they are more likely to lack the freedom to prioritise treatment. By analysing the role of healthcare in patients’ efforts towards balancing competing demands, this work further specifies person-centeredness for chronic care, highlighting the frailty of the illness and treatment processes and the need for continued socially aware support. Building on this, this thesis outlines a normative framework to orient ethically driven chronic care, calling for shared responsibility to ameliorate the cumulative effect of disadvantage amongst people who live with chronic disease.
| Type: | Thesis (Doctoral) |
|---|---|
| Qualification: | Ph.D |
| Title: | From self-management to shared management in chronic care: an empirical ethics investigation into the lived experience of chronic disease in England |
| Event: | UCL (University College London) |
| Open access status: | An open access version is available from UCL Discovery |
| Language: | English |
| Additional information: | Copyright © The Author 2021. 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 > UCL SLASH UCL > Provost and Vice Provost Offices > UCL SLASH > Faculty of Arts and Humanities UCL > Provost and Vice Provost Offices > UCL SLASH > Faculty of Arts and Humanities > SELCS |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10138546 |
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