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

Julia Downing; Barbara Gomes; Nancy Gikaara; Grace Munene; Barbara A. Daveson; Richard A. Powell; Faith N. Mwangi-Powell; Irene J. Higginson; Richard Harding; Project PRISMA; Natalia Monteiro Calanzani

doi:10.1186/1472-684X-13-4

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

Julia Downing^*, Barbara Gomes, Nancy Gikaara, Grace Munene, Barbara A. Daveson, Richard A. Powell, Faith N. Mwangi-Powell, Irene J. Higginson, Richard Harding, Project PRISMA, Natalia Monteiro Calanzani (Member of Consortium)

^*Corresponding author for this work

Deanery of Molecular, Genetic and Population Health Sciences

Research output: Contribution to journal › Article › peer-review

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

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.

Original language	English
Article number	4
Number of pages	9
Journal	BMC palliative care
Volume	13
Issue number	1
DOIs	https://doi.org/10.1186/1472-684X-13-4
Publication status	Published - 15 Feb 2014

Keywords / Materials (for Non-textual outputs)

Public health
Hospices
Palliative care
Attitude to death
Public opinion
Africa
SUB-SAHARAN AFRICA
PALLIATIVE CARE
ADVANCED CANCER
SOUTH-AFRICA
DEATH
PERSPECTIVES
PERCEPTIONS
COUNTRIES
SYMPTOMS
ADVANCE

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10.1186/1472-684X-13-4

Public preferences and priorities for end-of-life care in Kenya
© 2014 Downing et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited.
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title = "Public preferences and priorities for end-of-life care in Kenya: a population-based street survey",

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 withResults: 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, SUB-SAHARAN AFRICA, PALLIATIVE CARE, ADVANCED CANCER, SOUTH-AFRICA, DEATH, PERSPECTIVES, PERCEPTIONS, COUNTRIES, SYMPTOMS, ADVANCE",

author = "Julia Downing and Barbara Gomes and Nancy Gikaara and Grace Munene and Daveson, {Barbara A.} and Powell, {Richard A.} and Mwangi-Powell, {Faith N.} and Higginson, {Irene J.} and Richard Harding and {Project PRISMA} and {Monteiro Calanzani}, Natalia",

year = "2014",

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doi = "10.1186/1472-684X-13-4",

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T1 - Public preferences and priorities for end-of-life care in Kenya

T2 - a population-based street survey

AU - Downing, Julia

AU - Gomes, Barbara

AU - Gikaara, Nancy

AU - Munene, Grace

AU - Daveson, Barbara A.

AU - Powell, Richard A.

AU - Mwangi-Powell, Faith N.

AU - Higginson, Irene J.

AU - Harding, Richard

AU - Project PRISMA

A2 - Monteiro Calanzani, Natalia

PY - 2014/2/15

Y1 - 2014/2/15

N2 - 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 withResults: 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.

AB - 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 withResults: 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.

KW - Public health

KW - Hospices

KW - Palliative care

KW - Attitude to death

KW - Public opinion

KW - Africa

KW - SUB-SAHARAN AFRICA

KW - PALLIATIVE CARE

KW - ADVANCED CANCER

KW - SOUTH-AFRICA

KW - DEATH

KW - PERSPECTIVES

KW - PERCEPTIONS

KW - COUNTRIES

KW - SYMPTOMS

KW - ADVANCE

U2 - 10.1186/1472-684X-13-4

DO - 10.1186/1472-684X-13-4

M3 - Article

SN - 1472-684X

VL - 13

JO - BMC palliative care

JF - BMC palliative care

IS - 1

M1 - 4

ER -

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

Abstract

Keywords / Materials (for Non-textual outputs)

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