Res e a rc h
MORGANA WINGARD/AFRICAN PALLIATIVE CARE ASSOCIATION
www.ejp c . e u . c o m
■ Approximately 5–10 million
people need palliative care
across Africa annually
Palliative care research
in Africa: an overview
In this introductory article to a new series, Richard A Powell, Richard Harding,
Eve Namisango, Elly Katabira, Liz Gwyther, Lukas Radbruch, Scott A Murray,
Maged El-Ansary, Ike Oluwapo Ajayi and Faith Mwangi-Powell depict the challenges
and opportunities of conducting palliative care research in Africa
A
frica, the world’s second largest
continent, covers 30.2 million km2
(11.7 million sq mi) or 20% of the
global land area. Its estimated 1,072 million
inhabitants, amounting to 15.2% of the
world’s total population,1 are distributed across
five regions and 54 fully recognised states:
eastern Africa (17 countries; 342 million
inhabitants), central Africa (nine countries,
134 million inhabitants), northern Africa
(seven countries, 213 million inhabitants),
southern Africa (five countries; 59 million
inhabitants) and western Africa (16 countries,
324 million inhabitants) (see Figure 1).
Africa is characterised by a significant
burden of non-communicable and
communicable diseases, especially in its
sub-Saharan region, the relative distribution
of which is projected to shift by 20302
(assuming that the epidemiological transition
in developing regions continues). In 2011,
23.5 million people in the sub-Saharan region
were living with HIV/AIDS (69% of the global
162
Key points
● Some of the major obstacles to conducting
palliative care research in Africa are specific to
the continent and include an extensive
linguistic diversity and a significant
competition for scarce resources in such
resource-poor settings.
● The recently formed African Palliative Care
Research Network (APCRN) aims to build a
methodologically strong evidence base
informing the delivery of effective and
appropriate palliative care.
● In Africa, researchers have an opportunity to
access diverse patient populations, cultural
and spiritual milieus, and service settings.
● With the strategic support of international
partners and the development of a critical
mass of trained researchers, the future of
African palliative care research can be positive.
EUROPEAN JOURNAL OF PALLIATIVE CARE, 2013; 20(4)
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AFRICAN PALLIATIVE CARE ASSOCIATION, KAMPALA, UGANDA
disease burden) and there were 1.8 million
new cases.3 Cancer is an emerging public
health problem regionally.4 In 2008, there
were 542,000 cancer-related deaths and
715,000 new cancer cases, projected to nearly
double (970,000 deaths and 1.28 million new
cases) by 2030 due to population growth and
aging;5 36% of cancers are infection-related,
which is twice the global average.6 In 2010,
there were 259,500 new cases of tuberculosis
(TB) and 2.1 million TB-related deaths,7 with
the continent accounting for 80% of all TB
cases among people living with HIV.8
Based upon WHO 2005 estimates,9 and
conservatively factoring in patients’ families
(who need support as well, particularly in
their role as carers), approximately 5–10
million people living with the above diseases
and other life-limiting illnesses need palliative
care across Africa annually.
African palliative care –
history and current status
Palliative care started in Africa over 30 years
ago with the founding of the Island Hospice
and Bereavement Service in Harare,
Zimbabwe.10,11 Driven by pioneering advocates,
the discipline evolved outside mainstream
government health systems, among secular
and faith-based agencies.
Consequently, despite positive advances
over the last eight years – including the
operational formation of the African Palliative
Care Association (APCA) in 2004; a World
Health Assembly recognition, in 2005, ‘that
the provision of palliative care for all
individuals in need is an urgent, humanitarian
responsibility’;12 and an increase in the number
of service providers13–15 – the provision of
palliative care on the African continent
remains inconsistent, still occurring in isolated
centres with restricted geographical and
population coverage rather than meaningfully
integrated into healthcare structures.
There is a growing international
consensus,16 locally advanced by regional and
national organisations such as the Hospice
Palliative Care Association of South Africa, the
Uganda-based APCA and the Kenya Hospice
and Palliative Care Association, that if
palliative care is to reach all in need,
sustainable care models need to be embedded
within mainstream healthcare systems.
A successful example is Kenya, where 220
healthcare professionals have been trained to
EUROPEAN JOURNAL OF PALLIATIVE CARE, 2013; 20(4)
integrate palliative care into 11 major public
and provincial government hospitals.17
However, against a backdrop of health
systems deficits, limited access (which means
that the majority of patients use traditional
healers as their primary health provider) and
scarce programmatic resources, most African
palliative care services remain outside
national health systems. They
Sustainable care models continue to use a home-based
care model of service provision
need to be embedded
– built around trained health
within mainstream
professionals, family carers
healthcare systems
and community-based
volunteers – whose circumscribed coverage
does not address all the components of the
WHO’s enhanced public health model.18
Moreover, international funding in
response to the HIV epidemic has arguably
focused palliative care delivery opportunities
away from patients with other diagnoses,19
thus further limiting access – although
innovative models of care have been described
in TB and cancer.20,21
■ Figure 1.
Countries of Africa
African palliative care research
Challenges and needs
A decade after the reporting of a need among
care providers for methodologically robust
research,22 and despite some notable examples
outlined later in this article, the evidence base
informing the delivery of effective and
163
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www.ejp c . e u . c o m
EDWARD ECHWALU/AFRICAN PALLIATIVE CARE ASSOCIATION
Res e a rc h
■ At a meeting of the
recently created African
Palliative Care Research
Network (APCRN)
appropriate care on the continent remains in
its infancy23 and is best described as ‘sparse’.24
This is potentially problematic, as rigorous
research findings from other regions (for
example, Europe and the USA) are not
necessarily transferable to Africa, where
cultures, languages, disease profiles and
service settings differ so markedly.
Some of the key obstacles to the
development of research echo those identified
in the UK25 and include:
● Lack of a research culture
● Lack of research skills and knowledge
among healthcare professionals (that is,
absence of a critical research mass)
● Professional isolation
● Patient accrual and attrition
● Lack of agreement on outcome measures
● Dearth of research funding
● Dominance of the biomedical model
● Absence of national strategies for palliative
care research
● Absence of a strategic research vision.26
Other obstacles are more specific to the
African setting and include an extensive
linguistic diversity (from the four major
languages – Arabic, English, French and
Portuguese – to over 2,000 indigenous
languages) and significant competition for
scarce resources in resource-poor settings.
Major obstacles for the African setting were
described in detail by participants at a
workshop dedicated to improving
international collaborative research held at
the third triennial conference of the APCA in
Windhoek, Namibia, in September 2010.
164
Box 1. Challenges to conducting collaborative
research in Africa
Research skills
• Lack of staff and expertise
• No clear research questions
• Not knowing where to start research
Lack of resources
• Lack of, or restricted (for example, time-limited), funding
• Lack of time to draft proposal and get funding
• Fear of losing funding
• Lack of resources
Ethics permission
• Multiple review boards
• Approval needed from multiple sites to develop a protocol
• Ethical constraints
Organisational and bureaucratic impediments
• Conflicting aims and/or agendas
• Lack of government commitment
• Mistrust (from host institutions and/or government)
• Political and legal challenges
• Bureaucracy and/or unhelpful attitude
Lack of openness to research
• Unwillingness to find fault
External domination and conflicting interests
• Fear of domination (for example, by an outside organisation that has
its own agenda)
• Conflicting interests between collaborating countries and/or
institutions and/or organisations
Researcher isolation within institutions
• Isolation (no leading research body or framework)
• Lack of support from colleagues
• Varying levels of commitment within the research team
• Lack of support from institutions because of the research area
Methodological challenges
• Barriers to implementing research or translating it into practice
• Difficulties motivating participants to stay in a study
• Common barriers, such as lack of validated and/or translated
research tools
• Barriers linked with the research area
• Diverse languages and cultures
EUROPEAN JOURNAL OF PALLIATIVE CARE, 2013; 20(4)
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Split into five discussion groups, 49
participants from across Africa, Europe and
North America described numerous issues,
identifying the challenges and needs when
conducting collaborative research in Africa.
Boxes 1 and 2 show the thematically
clustered results of these discussions. Evident
in both lists is the challenge posed by, and the
need to address, limited palliative care
research skills and resources to undertake it, as
well as the fact that researchers operate in
isolation, without the support of a
community of like-minded peers and in what
were sometimes described as unsupportive
and negative work environments.
Given these challenges and needs, palliative
care research in Africa has, so far, been
primarily conducted through international
collaborative partnerships. International
collaboration can enhance palliative care
research by optimising skills and knowledge
transfer; building skills capacity; maximising
patient accrual and retention; facilitating
successful funding applications; identifying
needs and developing effective services that
are culturally relevant and appropriate;
establishing networking mechanisms; and
enabling multi-country comparative studies.
However, these partnerships, with notable
exceptions, have traditionally been
characterised by:
● Short-term, project-specific commitment
● Inadequate financing
● Over-emphasis on North-South partnerships
Researc h
Box 2. What is needed to conduct collaborative
research in Africa
Research training and infrastructure
• Training in research methodology
• How to do research
• Determining how relevant a research topic is
• Determining well-defined research questions
Resources
• Human resources (for example, co-ordinator, support staff)
• Space
• Equipment
• Funding (financial and material)
• Dedicated time
Networking opportunities
• Network of collaborators
• Common interest
• Possibility of networking with experienced researchers
• Teamwork and/or collaboration
Work equitably in professional partnerships
• Mutual respect
• Clear roles and responsibilities
• Good communication
• Complementary skills
• Opportunities to share
Supportive environments
• Ability to agree (for example, on research questions)
• Co-operation from clinical services
• Time
• Communication
• Commitment
• Full involvement of all stakeholders
Logistics
• Access to willing research participants
• Ethical approval (local and international)
• Information (from institutional review boards, medical
directors, and so on); clear outline of what is required
• Co-ordination
• Help with ethics
MORGANA WINGARD/AFRICAN PALLIATIVE CARE ASSOCIATION
www.ejpc.eu.com
■ Most African
palliative care
services remain
outside national
health systems
EUROPEAN JOURNAL OF PALLIATIVE CARE, 2013; 20(4)
165
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■ Part of the early work
EDWARD ECHWALU/AFRICAN PALLIATIVE CARE ASSOCIATION
of the African Palliative
Care Research Network
(APCRN) has been the
development of a
region-wide, prioritised
research agenda
● Over-dependency on key individuals, rather
than institutions
● Lack of a strategic organisational model to
ensure sustainable collaboration.26
Current status and opportunities
To begin to address the above limitations, and
foster sustainable collaboration, the APCA
recently formed the African Palliative Care
Research Network (APCRN), a multi-country
collaboration that unites African researchers
with those in Europe and North America and
aims to build a methodologically strong
evidence base for palliative care on the
continent. Part of its early work has been the
development of a region-wide, prioritised
research agenda.27
The APCRN has been augmented by linking
it to the EAPC Task Force on Palliative Care in
Africa. Moreover, with subregional
organisational hubs located across the
continent, the fledgling network is centred
around a number of leading academic centres
engaged in palliative care research. These
include Makerere University, Uganda, and the
University of Cape Town, South Africa – both
organisations running formal courses and
workshops on research methods as well as
engaging in research itself.
Examples of research conducted to date will
be elaborated upon in the four subregional
articles that will follow this overview (and
tackle southern, eastern, western and
northern Africa). What we can already say
here is that research is covering increasingly
diverse fields, including:
● Physical domains of patients’ experiences,
including the multidimensional nature of
disease burden and its correlates28–31
166
● Spiritual domains of patients’ experiences32,33
● Patients’ information and communication
preferences34
● Patients’ needs in the dying process35,36
● Role of traditional healers in identifying
patients’ care needs and cultural practices37
● Roles of volunteers in service provision.38,39
In terms of future research opportunities, it
is clear that, while methodological advances
have been made on developing age- and
culture-appropriate validated patient-level
tools,40–42 there is a need to employ evaluative
rather than descriptive research designs for
interventionist studies to determine service
efficacy.43 Also, there is a need to extend
research to other areas of the continent,
beyond those countries that currently have
the greatest research capacity – that is, Kenya,
South Africa and Uganda.
Conclusions
Palliative care research in Africa is starting to
be established. As it moves forward,
researchers have an opportunity to access
immensely diverse:
● Patient populations (linguistically,
ethnically and diagnostically, including
co-morbidities and rare presentations such
as multidrug-resistant TB)
● Cultural and spiritual milieus (including
intersections between traditional and
modern beliefs)
● Service settings (from rural to urban).
As this series of articles will demonstrate,
despite the challenges that researchers face,
with the strategic support of international
partners and the development of a critical
mass of trained researchers, the future of
African palliative care research can be positive.
EUROPEAN JOURNAL OF PALLIATIVE CARE, 2013; 20(4)
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This overview will be followed by four articles, each tackling one major
subregion: southern, eastern, western and northern Africa. Central Africa
has not yet developed an independent palliative care research presence
and will therefore be covered in the paper about southern Africa.
For more on palliative care research in Africa, read the editorial comment
by Lukas Radbruch on pages 160–161.
Declaration of interest
The authors declare that there is no conflict of interest.
References
1. US Population Reference Bureau. 2012 World Population Data Sheet.
www.prb.org/Publications/Datasheets/2012/world-population-datasheet.aspx (last accessed 08/04/2013)
2. Mathers CD, Loncar D. Projections of global mortality and burden of
disease from 2002 to 2030. PLoS Med 2006; 3: e442.
3. Joint United Nations Programme on HIV/AIDS (UNAIDS). UNAIDS Report of
the Global AIDS Epidemic 2012.
www.unaids.org/en/resources/publications/2012/name,76121,en.asp (last
accessed 08/04/2013)
4. Jemal A, Bray F, Forman D et al. Cancer burden in Africa and opportunities
for prevention. Cancer 2012; 118: 4372–4384.
5. Ferlay J, Shin H-R, Bray F et al. Estimates of worldwide burden of cancer in
2008: GLOBOCAN 2008. Int J Cancer 2010; 127: 2893–2917.
6. Parkin DM. The global health burden of infection-associated cancers in the
year 2002. Int J Cancer 2006; 118: 3030–3044.
7. United Nations. The Millennium Development Goals Report 2012.
www.un.org/millenniumgoals/pdf/MDG%20Report%202012.pdf (last
accessed 08/04/2013).
8. World Health Organization (WHO). Global Tuberculosis Report. Geneva:
WHO, 2012. www.who.int/tb/publications/global_report/en/ (last accessed
08/04/2013)
9. World Health Organization (WHO). A Community Health Approach to
Palliative Care for HIV/AIDS and Cancer Patients in Sub-Saharan Africa. Geneva:
WHO, 2005. www.who.int/hiv/pub/prev_care/palliativecare/en/ (last
accessed 08/04/2013)
10. Mwangi-Powell FN, Downing J, Ddungu H et al. Palliative care in Africa.
In: Ferrell BR, Coyle N (eds). Textbook of Palliative Nursing, 3rd edn. New York:
Oxford University Press, 2010: 1319–1329.
11. Wright M, Clark D. Hospice and Palliative Care in Africa: A Review of
Developments and Challenges. Oxford: Oxford University Press, 2006.
12. Fifty-eighth World Health Assembly, resolution 58.22 on cancer
prevention and control. Geneva: World Health Organisation, 2005: 93.
http://apps.who.int/gb/or/e/e_wha58r1.html (last accessed 15/05/2013)
13. Grant L, Brown J, Leng M, Bettega N, Murray SA. Palliative care making a
difference in rural Uganda, Kenya and Malawi: three rapid evaluation field
studies. BMC Palliat Care 2011; 10: 8.
14. Lynch T, Connor S, Clark D. Mapping levels of palliative care
development: a global update. J Pain Symptom Manage 2012; pii: S08853924(12)00334-X.
15. Powell RA, Mwangi-Powell FN, Kiyange F, Radbruch L, Harding R.
Palliative care development in Africa: how we can provide enough quality
care? BMJ Support Palliat Care 2011; 1: 113–114.
16. Batiste XG, Paz S. Public palliative care: review of key developments and
implementation issues. Curr Opin Support Palliat Care 2007; 1: 213–217.
17. Achia G. Palliative care key in cancer management. Science Africa 2011; 18: 5.
18. Stjernswärd J, Foley K, Ferris FD. The public health strategy for palliative
care. J Pain Symptom Manage 2007; 33: 486–493.
19. Lemoine M, Girard PM, Thursz M, Raguin G. In the shadow of HIV/AIDS:
forgotten diseases in sub-Saharan Africa: global health issues and funding
agency responsibilities. J Public Health Policy 2012; 33: 430–438.
20. Harding R, Foley K, Connor SR, Jaramillo E. Palliative and end-of-life care
in the global response to multidrug-resistant tuberculosis. Lancet Infect Dis
2012; 12: 643–646.
21. Harding R, Selman L, Powell RA et al. Palliative care to improve outcomes
for cancer patients in sub-Saharan Africa. Lancet Oncology 2013;
14: e183–e188.
22. Harding R, Stewart K, Marconi K, O’Neill J, Higginson IJ. Current HIV/AIDS
end-of-life care in sub-Saharan Africa: a survey of models, services,
challenges and priorities. BMC Public Health 2003; 3: 33.
23. Harding R, Powell RA, Downing J et al. Generating an African palliative
care evidence base: The context, need, challenges and strategies. J Pain
Symptom Manage 2008; 36: 304–309.
24. Jang J, Lazenby M. Current state of palliative and end-of-life care in home
versus inpatient facilities and urban versus rural settings in Africa. Palliat
Support Care 2013; 23: 1–18.
25. Richards M, Corner J, Clark D. Developing a research culture for palliative
care. Palliat Med 1998; 12: 399–403.
26. Powell RA, Downing J, Mwangi-Powell F, Radbruch L, Harding R.
Advancing palliative care research in sub-Saharan Africa: from Venice to
Nairobi. European Journal of Palliative Care 2008; 15: 228–233.
27. Powell RA, Harding R, Katabira E et al. Palliative care research in Africa:
consensus building for a prioritised agenda. J Pain Symptom Manage 2013
[In press].
28. Wakeham K, Harding R, Bamukama-Namakoola D et al. Symptom burden
in HIV-infected adults at time of HIV diagnosis in rural Uganda. J Palliat Med
2010; 13: 375–380.
29. Harding R, Selman L, Agupio G et al. The prevalence and burden of
symptoms amongst cancer patients attending palliative care in two African
countries. Eur J Cancer 2011; 47: 51–56.
30. Harding R, Selman L, Agupio G et al. Prevalence, burden, and correlates of
physical and psychological symptoms among HIV palliative care patients in
sub-Saharan Africa: an international multicenter study. J Pain Symptom
Manage 2012; 44: 1–9.
EUROPEAN JOURNAL OF PALLIATIVE CARE, 2013; 20(4)
31. Simms VM, Gikaara N, Munene G et al. Multidimensional patient-reported
problems within two weeks of HIV diagnosis in East Africa: a multicentre
observational study. PLoS ONE 2013; 8: e57203.
32. Selman L, Siegert RJ, Higginson IJ et al. The ‘Spirit 8’ successfully captured
spiritual well-being in African palliative care: factor and Rasch analysis. J Clin
Epidemiol 2012; 65: 434–443.
33. Kale SS. Perspectives on spiritual care at Hospice Africa Uganda. Int J
Palliat Nurs 2011; 17: 177–182.
34. Selman L, Higginson IJ, Agupio G et al. Meeting information needs of
patients with incurable disease and their families in South Africa and
Uganda: multicentre qualitative study. BMJ 2009; 338: b1326.
35. Murray SA, Grant E, Grant A, Kendall M. Dying from cancer in developed
and developing countries: lessons from two qualitative interview studies of
patients and their carers. BMJ 2003; 326: 368.
36. Kikule E. A good death in Uganda: survey of needs for palliative care for
terminally ill people in urban areas. BMJ 2003; 327: 192–194.
37. Graham N, Gwyther L, Tiso T, Harding R. Traditional healers’ views of the
required processes for a “good death” among Xhosa patients pre- and postdeath. J Pain Symptom Manage 2012; pii: S0885-3924(12)00461-7.
38. Emanuel RH, Emanuel GA, Reitschuler EB et al. Challenges faced by
informal caregivers of hospice patients in Uganda. J Palliat Med 2008;
11: 746–753.
39. Jack BA, Kirton JA, Birakurataki J, Merriman A. The personal value of
being a palliative care Community Volunteer Worker in Uganda: a qualitative
study. Palliat Med 2012; 26: 753–759.
40. Harding R, Selman L, Agupio G et al. Validation of a core outcome
measure for palliative care in Africa: the APCA African Palliative Outcome
Scale. Health Qual Life Outcomes 2010; 8: 10.
41. Downing J, Ojing M, Powell RA et al. A palliative care outcome measure
for children in sub-Saharan Africa: early development findings. European
Journal of Palliative Care 2012; 19: 292–295.
42. Downing J, Simon ST, Mwangi-Powell FN et al. Outcomes ‘out of Africa’:
the selection and implementation of outcome measures for palliative care in
Africa. BMC Palliat Care 2012; 11: 1.
43. Harding R, Simms V, Alexander C et al. Can palliative care integrated
within HIV outpatient settings improve pain and symptom control in a lowincome country? A prospective, longitudinal, controlled intervention
evaluation. AIDS Care 2012 [Epub ahead of print].
Richard A Powell, Deputy Director Research,
HealthCare Chaplaincy, New York, USA; Richard
Harding, Reader in Palliative Care, King’s College
London, Cicely Saunders Institute, Department of
Palliative Care, Policy and Rehabilitation, London,
UK and Visiting Professor, Palliative Medicine
Programme, Department of Public Health and
Family Medicine, University of Cape Town, South
Africa; Eve Namisango, Monitoring & Evaluation
and Research Officer, African Palliative Care
Association, Kampala, Uganda; Elly Katabira,
Professor of Medicine, College of Health Sciences,
Makerere University, Kampala, Uganda;
Liz Gwyther, Chief Executive Officer, Hospice
Palliative Care Association of South Africa and
Senior Lecturer, Division of Family Medicine, School
of Public Health, University of Cape Town, South
Africa; Lukas Radbruch, Professor of Palliative
Medicine, University of Bonn, Director, Palliative
Medicine Department, University Hospital Bonn,
Germany and Chair, EAPC Task Force on
Collaboration with Africa; Scott A Murray,
St Columba’s Hospice Chair of Primary Palliative
Care, Primary Palliative Care Research Group,
Centre for Population Health Sciences, University of
Edinburgh, UK; Maged El-Ansary, Professor of Pain
Medicine, Anesthesia Department, Faculty of
Medicine, Al-Azhar University, Cairo, Egypt;
Ike Oluwapo Ajayi, Senior Lecturer, Faculty of Public
Health, College of Medicine, University of Ibadan,
Nigeria; Faith Mwangi-Powell, Senior Programme
Officer, Open Society Foundations, New York, USA
167
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