Abstract
Background:Ethical issues arise daily within palliative care provision. Despite much (largely theoretical) literature, evidence derived from specialist palliative care (SPC) practitioners’ experiences of day-to-day ethical challenges remains scarce. Understanding these challenges is crucial to inform education and training in SPC and support practitioners.
Aim:
To explore and describe the ethical challenges faced by specialist palliative care professionals practising in Uganda.
Design:
The study comprised (1) a systematic review with narrative synthesis to synthesise the evidence regarding the ethical challenges faced by SPC practitioners during their clinical practice, followed by (2) qualitative semi-structured interviews with a purposive sample of SPC practitioners across 6 sites in Uganda to explore experiences and views of ethical challenges in their work. Interview data were analysed using inductive thematic analysis, underpinned by Racine’s natural pragmatism.
Results:
(1) In the systematic review, 8074 records were screened and 13 studies from 9 countries included. Challenges were organised into 6 themes: application of ethical principles; delivering clinical care; working with families; engaging with institutional structures and values; navigating societal values and expectations; and philosophy of palliative care. (2) 36 interviews were conducted with SPC practitioners in Uganda. Challenges were identified across four thematic areas: inside the consultation, bedside deliberations, engaging institutions, and navigating society. Four cross-cutting themes were also found: gender, resources, working with families and traditional health beliefs. Challenges were described in a highly contextual manner, rather than via ethical principles.
Conclusion:
This thesis provides novel evidence of the specific nature of the ethical challenges reported by SPC practitioners in Uganda. It demonstrates a breadth of highly contextual ethical challenges not represented in current literature or training materials. Findings have important implications for supporting SPC practitioners in the ethical aspects of their clinical practice; as well as for training, both content and approaches; and bioethics more generally.
| Date of Award | 6 Dec 2022 |
|---|---|
| Original language | English |
| Awarding Institution |
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| Supervisor | Lucy E Selman (Supervisor), Emer Brangan (Supervisor) & Richard Huxtable (Supervisor) |