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Public opinion on preferences and priorities for end-of-life care in sub-Saharan Africa: piloting a novel method of street surveying
  1. Julia Downing1,2,
  2. Nancy Gikaara2,
  3. Barbara Gomes3,
  4. Barbara A Daveson3,
  5. Irene J Higginson3 and
  6. Richard Harding3 on behalf of Project PRISMA
  1. 1Department of Medicine, Makerere University, Kampala, Uganda
  2. 2Formerly African Palliative Care Association, Kampala, Uganda
  3. 3Department of Palliative Care, Policy and Rehabilitation, King's College London, Cicely Saunders Institute, London, UK
  1. Correspondence to Professor Julia Downing, Department of Medicine, Makerere University, PO Box 7072, Kampala, Uganda; julia.downing792{at}btinternet.com

Abstract

There is a great need for end-of-life care in Africa due to the high incidence of life-threatening illness. However, little is known about the views of the African public on end-of-life care. Therefore, the authors piloted a street survey in Nairobi (Kenya), where adult pedestrians were randomly interviewed about local preferences and priorities for end-of-life care. Two of 19 people consented but later withdrew, one because of religious beliefs and one because of the sensitive nature of the subject. Interviews took approximately 15 min. Interviewers' field notes revealed no major problems with content, but identified tribal and ethnic origin as a sensitive topic, and stressed the usefulness of the presence of a ‘buddy’ for the safety of the interviewer. One participant found it upsetting to talk about the topic and did not want to be informed about a terminal illness. The 16 remaining participants said the interview was not distressing and answered all questions. All 17 had experienced the death of a close relative in the last 5 years. Methodological and implementation lessons have been learnt and the results of the pilot suggest street surveying is a feasible and acceptable method to examine public opinion on end-of-life care in Africa, provided people are able to freely decline to respond and safety measures are in place for interviewer. This novel pilot offers a new opportunity for health research in Africa.

https://doi.org/10.1136/bmjspcare-2011-000112

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    Footnotes

    • Funding PRISMA is funded by the European Commission's Seventh Framework Programme (contract number: Health-F2-2008-201655) with the overall aim of co-ordinating high-quality international research into end-of-life cancer care. PRISMA aims to provide evidence and guidance on best practice to ensure that research can measure and improve outcomes for patients and families. PRISMA activities aim to reflect the preferences and cultural diversities of citizens, and the clinical priorities of clinicians, and appropriately measure multidimensional outcomes across settings where end–of-life care is delivered.

    • PRISMA Principal investigator Richard Harding. Scientific Director Irene J Higginson who is also a senior NIHR investigator. PRISMA members: Gwenda Albers, Barbara Antunes, Ana Barros Pinto, Claudia Bausewein, Dorothee Bechinger-English, Hamid Benalia, Emma Bennett, Lucy Bradley, Lucas Ceulemans, Barbara A Daveson, Luc Deliens, Noël Derycke, Martine de Vlieger, Let Dillen, Julia Downing, Michael Echteld, Natalie Evans, Dagny Faksvåg Haugen, Nancy Gikaara, Barbara Gomes, Marjolein Gysels, Sue Hall, Richard Harding, Irene J Higginson, Stein Kaasa, Jonathan Koffman, Pedro Lopes Ferreira, Arantza Menaca, Johan Menten, Natalia Monteiro Calanzani, Fliss Murtagh, Bregje Onwuteaka-Philipsen, Roeline Pasman, Francesca Pettenati, Robert Pool, Richard A Powell, Miel Ribbe, Katrin Sigurdardottir, Steffen Simon, Franco Toscani, Bart Van den Eynden, Paul Vanden Berghe, Trudie van Iersel.

    • Competing interests None.

    • Ethics approval The Kenya Medical Research Institute (KEMRI RES 7/3/1) and the ethics committee of the academic coordinating centre in Europe (BDM/08/09-100) approved this study.

    • Provenance and peer review Not commissioned; externally peer reviewed.