Namukwaya, E, Nabirye, E, Dandadzi, A et al. (6 more authors) (2022) "From the time you start with them until the Lord calls you": A qualitative study on the experiences and expectations of people living with advanced cancer interacting with palliative care services in Uganda, Nigeria and Zimbabwe. Journal of Pain and Symptom Management, 64 (6). pp. 588-601. ISSN 0885-3924
Abstract
Context
A challenge facing the provision of palliative care in sub-Saharan Africa is a means of increasing coverage of services whilst maintaining quality. Developing an evidence base that reflects patients’ experiences and expectations of palliative care services, the context within which services are provided, and the approaches adopted by services in caring for patients, could facilitate and inform the planning and development of patient-centered and responsive services.
Objectives
To explore the experiences and expectations of palliative care for people living with advanced cancer in Nigeria, Uganda, and Zimbabwe.
Methods
A secondary qualitative analysis of in-depth interviews with 62 people with advanced cancer in Nigeria, Uganda, and Zimbabwe. Framework approach to thematic analysis of transcripts was adopted, focusing on patients’ experiences and expectations when interacting with palliative care services, aligning reporting with the COnsolidated criteria for REporting Qualitative research (COREQ).
Results
Four main themes were generated from the analysis: 1) Condition and community as drivers of a multidimensional burden when living with advanced cancer; 2) The expectations and endeavors of palliative care to ameliorate the impact of cancer on physical, psychological and basic needs; 3) Processes and preferences for interacting and communicating with palliative care services, and; 4) Restoration of hope in the context of limited resources.
Conclusion
Wide-ranging physical, psychological, social and financial impacts on participants were outlined. These concerns were largely met with compassionate and responsive care in the context of constrained resources. Study findings can inform evolving notions of patient-centred care for serious illnesses in the participating countries.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © 2022 The Authors. Published by Elsevier Inc. on behalf of American Academy of Hospice and Palliative Medicine. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/). |
Keywords: | Palliative care; sub-Saharan Africa; patient experience; qualitative research |
Dates: |
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Institution: | The University of Leeds |
Academic Units: | The University of Leeds > Faculty of Medicine and Health (Leeds) > School of Medicine (Leeds) > Leeds Institute of Health Sciences (Leeds) > Nuffield Centre for International Health and Development (Leeds) |
Funding Information: | Funder Grant number MRC (Medical Research Council) MR/S014535/1 |
Depositing User: | Symplectic Publications |
Date Deposited: | 31 Aug 2022 15:02 |
Last Modified: | 01 Feb 2023 01:48 |
Status: | Published |
Publisher: | Elsevier |
Identification Number: | 10.1016/j.jpainsymman.2022.08.022 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:190439 |