Meeting information needs of patients with incurable progressive disease and their families in South Africa and Uganda: multicentre qualitative studyBMJ 2009; 338 doi: https://doi.org/10.1136/bmj.b1326 (Published 22 April 2009) Cite this as: BMJ 2009;338:b1326
- Lucy Selman, research associate1,
- Irene J Higginson, professor1,
- Godfrey Agupio, research nurse2,
- Natalya Dinat, director3,
- Julia Downing, deputy executive director4,
- Liz Gwyther, senior lecturer5,
- Thandi Mashao, research nurse6,
- Keletso Mmoledi, palliative care service team leader3,
- Anthony P Moll, chief medical officer7,
- Lydia Mpanga Sebuyira, head of training department8,
- Barbara Panajatovic, chief executive9,
- Richard Harding, senior lecturer1
- 1King’s College London, Department of Palliative Care, Policy and Rehabilitation, King’s College London, London SE5 9RJ
- 2Hospice Africa Uganda, PO Box 7757, Kampala, Uganda
- 3Witwatersrand Palliative Care, PO Box 212, Pimville, Soweto 1808, Johannesburg, Gauteng, South Africa
- 4African Palliative Care Association, PO Box 72518, Kampala
- 5Hospice Palliative Care Association of South Africa, PO Box 38785, Pinelands 7430, Cape Town, Western Cape, South Africa
- 6Palliative Medicine Unit, University of Cape Town, Observatory 7925, Cape Town
- 7Church of Scotland Hospital, P/Bag X502, Tugela Ferry 3010, KwaZulu Natal, South Africa
- 8Infectious Diseases Institute, Faculty of Medicine, Makerere University, PO Box 22418, Kampala
- 9Msunduzi Hospice, PO Box 220223, Pietermaritzburg 3208, KwaZulu Natal
- Corresponding author: L Selman
- Accepted 19 December 2008
Objectives To explore the information needs of patients with progressive, life limiting disease and their family caregivers in South Africa and Uganda and to inform clinical practice and policy in this emerging field.
Design Semistructured qualitative interview study.
Setting Four palliative care services in South Africa and one in Uganda, covering rural, urban, and peri-urban locations.
Participants 90 patients and 38 family caregivers enrolled in palliative care services; 28 patients had cancer, 61 had HIV infection (including 6 dual HIV/cancer diagnoses), and 1 had motor neurone disease.
Results Five themes emerged from the data. (1) Information sources: a lack of information from general healthcare providers meant that patients and caregivers had to draw on alternative sources of information. (2) Information needs: patients and caregivers reported needing more information in the key areas of the causes and progression of the disease, its symptoms and treatment, and financial/social support. (3) Impact of unmet needs: poor provision of information had a detrimental effect on patients’ and caregivers’ ability to cope. (4) Communication: negative experiences of communication with general healthcare staff were reported (misinformation, secrecy, insensitivity). (5) Barriers to effective provision of information: barriers related to symptoms, culture, time constraints in hospital, and paternalism in general health care.
Conclusions Lack of information was a major theme for both patients and carers, who had important unanswered questions relating to living with a progressive incurable disease. Evidence based recommendations for clinicians are presented, including the proactive provision of information tailored to individual patients and families.
We are very grateful to all the patients and caregivers who participated, the service staff who helped with recruitment, and the Big Lottery Fund UK and Cicely Saunders International for funding this study. We thank Claire Gillespie and Penny Gwacela at South Coast Hospice, Patricia Ndlovu at Philanjalo Hospice, and Kabuye Deo and Lillian Mpeirwe at Hospice Africa Uganda for assisting with interviews, and Fliss Murtagh and Jonathan Koffman for comments on a previous draft.
Contributors: RH and IJH applied for funding. RH, IJH, and LS designed the study. LS and RH trained the nurses and oversaw data collection, transcription, and analysis. GA, TM, and KM recruited participants and conducted, transcribed, and translated interviews. ND, LG, APM, LS, and BP supervised recruitment, data collection, transcription, and translation. LS analysed the data and wrote the first draft of the paper, supervised by RH and IJH. All authors commented on and contributed to the final draft. RH is the guarantor.
Funding: This study was sponsored by a grant from the Big Lottery UK through Cicely Saunders International. The authors declare their independence from the funders.
Competing interests: None declared.
Ethical approval: The study was reviewed and approved by the ethics review boards of the Universities of Cape Town, KwaZulu Natal, and Witwatersrand; the Ugandan National Council for Science and Technology; Hospice Africa Uganda; and the Hospice Palliative Care Association of South Africa.
- Accepted 19 December 2008
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