Meeting information needs of patients with incurable progressive disease and their families in South Africa and Uganda: multicentre qualitative study

doi:10.1136/bmj.b1326

Published 22 April 2009, doi:10.1136/bmj.b1326
Cite this as: BMJ 2009;338:b1326

Research

Meeting information needs of patients with incurable progressive disease and their families in South Africa and Uganda: multicentre qualitative study

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

¹ King’s College London, Department of Palliative Care, Policy and Rehabilitation, King’s College London, London SE5 9RJ, ² Hospice Africa Uganda, PO Box 7757, Kampala, Uganda, ³ Witwatersrand Palliative Care, PO Box 212, Pimville, Soweto 1808, Johannesburg, Gauteng, South Africa, ⁴ African Palliative Care Association, PO Box 72518, Kampala, ⁵ Hospice Palliative Care Association of South Africa, PO Box 38785, Pinelands 7430, Cape Town, Western Cape, South Africa, ⁶ Palliative Medicine Unit, University of Cape Town, Observatory 7925, Cape Town, ⁷ Church of Scotland Hospital, P/Bag X502, Tugela Ferry 3010, KwaZulu Natal, South Africa, ⁸ Infectious Diseases Institute, Faculty of Medicine, Makerere University, PO Box 22418, Kampala, ⁹ Msunduzi Hospice, PO Box 220223, Pietermaritzburg 3208, KwaZulu Natal

Corresponding author: L Selman lucy.selman{at}kcl.ac.uk

Objectives To explore the information needs of patients withprogressive, life limiting disease and their family caregiversin South Africa and Uganda and to inform clinical practice andpolicy in this emerging field.

Design Semistructured qualitative interview study.

Setting Four palliative care services in South Africa and onein Uganda, covering rural, urban, and peri-urban locations.

Participants 90 patients and 38 family caregivers enrolled inpalliative care services; 28 patients had cancer, 61 had HIVinfection (including 6 dual HIV/cancer diagnoses), and 1 hadmotor neurone disease.

Results Five themes emerged from the data. (1) Information sources:a lack of information from general healthcare providers meantthat patients and caregivers had to draw on alternative sourcesof information. (2) Information needs: patients and caregiversreported needing more information in the key areas of the causesand progression of the disease, its symptoms and treatment,and financial/social support. (3) Impact of unmet needs: poorprovision of information had a detrimental effect on patients’and caregivers’ ability to cope. (4) Communication: negativeexperiences of communication with general healthcare staff werereported (misinformation, secrecy, insensitivity). (5) Barriersto effective provision of information: barriers related to symptoms,culture, time constraints in hospital, and paternalism in generalhealth care.

Conclusions Lack of information was a major theme for both patientsand carers, who had important unanswered questions relatingto living with a progressive incurable disease. Evidence basedrecommendations for clinicians are presented, including theproactive provision of information tailored to individual patientsand families.

© Selman et al 2009
This is an open-access article distributed under the terms of the Creative Commons Attribution Non-commercial License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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