Open Access Research article

Public preferences and priorities for end-of-life care in Kenya: a population-based street survey

Julia Downing12*, Barbara Gomes3, Nancy Gikaara4, Grace Munene2, Barbara A Daveson3, Richard A Powell2, Faith N Mwangi-Powell2, Irene J Higginson3, Richard Harding3 and On behalf of Project PRISMA

Author Affiliations

1 Makerere University, PO Box 72518, Kampala, Uganda

2 Formerly African Palliative Care Association, Kampala, Uganda

3 Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, King’s College London, Denmark Hill, London, UK

4 Formerly African Palliative Care Association, Nairobi, Kenya

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BMC Palliative Care 2014, 13:4  doi:10.1186/1472-684X-13-4

Published: 15 February 2014

Abstract

Background

End-of-life care needs are great in Africa due to the burden of disease. This study aimed to explore public preferences and priorities for end-of-life care in Nairobi, Kenya.

Methods

Population-based street survey of Kenyans aged ≥18; researchers approached every 10th person, alternating men and women. Structured interviews investigated quality vs. quantity of life, care priorities, preferences for information, decision-making, place of death (most and least favourite) and focus of care in a hypothetical scenario of serious illness with <1 year to live. Descriptive analysis examined variations.

Results

201 individuals were interviewed (100 women) representing 17 tribes (n = 90 44.8%, Kikuyu). 56.7% (n = 114) said they would always like to be told if they had limited time left. The majority (n = 121, 61.4%) preferred quality of life over quantity i.e. extending life (n = 47, 23.9%). Keeping a positive attitude and ensuring relatives/friends were not worried were prioritised above having pain/discomfort relieved. The three most concerning problems were pain (45.8%), family burden (34.8%) and personal psychological distress (29.8%). Home was both the most (51.1% n = 98) and least (23.7% n = 44) preferred place of death.

Conclusion

This first population-based survey on preferences and priorities for end-of-life care in Africa revealed that psycho-social domains were of greatest importance to the public, but also identified variations that require further exploration. If citizens’ preferences and priorities are to be met, the development of end-of-life care services to deliver preferences in Kenya should ensure an holistic model of palliative care responsive to individual preferences across care settings including at home.

Keywords:
Public health; Hospices; Palliative care; Attitude to death; Public opinion; Africa