304 Journal of Pain and Symptom Management Vol. 36 No. 3 September 2008

NHPCO Special Article

Generating an African Palliative CareEvidence Base: The Context, Need,Challenges, and StrategiesRichard Harding, BSc (Joint Hons), DipSW, MSc, PhD, Richard A. Powell, BA, MA,MSc, Julia Downing, MMedSci, BN (Hons), DipCN, RGN, PhD, StephenR. Connor, PhD, Faith Mwangi-Powell, MSc (Econ), PhD, Kath Defilippi, RN,RM, DNE, CHN, Sue Cameron, MA, Eunice Garanganga, RN, BSc, Dip PalliativeCare, Dip Midwifery, Ekiria Kikule, MBChB, DPH, MMed (PH), DipHealth Adm,and Carla Alexander, MDKing’s College London School of Medicine (R.H.), London, United Kingdom; African Palliative Care

Association (R.A.P., J.D., F.M.-P.), Kampala, Uganda; National Hospice and Palliative Care

Organization (S.R.C.), Alexandria, Virginia, USA; Hospice Palliative Care Association of South

Africa (K.D., S.C.), Pinelands, South Africa; Hospice Association of Zimbabwe (E.G.), Harare,

Zimbabwe; The Mildmay Centre (E.K.), Kampala, Uganda; and the University of Maryland School of

Medicine (C.A.), Baltimore, Maryland, USA

AbstractThe enormous burden of progressive, incurable disease in sub-Saharan Africa is reflected in theepidemiology of cancer and HIV. However, there has been little research activity and evidencegenerated to inform appropriate and effective responses. A collaborative of clinicians, academicsand advocates have been active in the design, delivery and reporting of research activites inAfrican palliative care. Here, they report the methodological, ethical, logistic and capacity-basedchallenges of conducting research in the sub-Saharan context from their experience. A number ofstrategies and responses are presented. J Pain Symptom Manage 2008;36:304e309.� 2008 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Key WordsAfrica, research, methodology, review

The ContextBy December 2007, an estimated 22.5 mil-

lion people in sub-Saharan Africa were livingwith the human immunodeficiency virus/ac-quired immune deficiency syndrome (HIV/

Address correspondence to: Richard Harding, BSc(Joint Hons), DipSW, MSc, PhD, Department of Pal-liative Care, Policy & Rehabilitation, King’s CollegeLondon, School of Medicine, Weston EducationCentre, Cutcombe Road, London SE5 9RJ, UnitedKingdom. E-mail: richard.harding@kcl.ac.uk

Accepted for publication: April 26, 2008.

� 2008 U.S. Cancer Pain Relief CommitteePublished by Elsevier Inc. All rights reserved.

AIDS), 62.5% of the global disease burden,with 1.6 million HIV-related deaths and 1.7million new infections reported in that yearalone from this resource-constrained region.1

Given the decreasing mortality rates resultingfrom increased access to antiretroviral (ARV)therapies, and the continuing high incidenceof the disease in the absence of more effectivebehavioral change programs, the prevalence ofHIV/AIDS across the continent could remainhigh, or indeed rise.2

Additionally, cancer rates across the conti-nent are expected to increase by 400% over

0885-3924/08/$esee front matterdoi:10.1016/j.jpainsymman.2008.04.008

Vol. 36 No. 3 September 2008 305Evidence in African Palliative Care

the next 50 years.3 The World Health Organi-zation estimates that there are more than 0.5million annual cancer deaths in Africa4 andthat by 2020, 70% of new cancer cases will bein the developing world.5

The African continent is, however, charac-terized by resource and infrastructure defi-ciencies that render governments least ableto address this disease burden. Survival ratesare consequently significantly lower than thosein developed countries, and patients’ expecta-tions for disease-modifying oncological treat-ment are low.6,7 Indeed, the imperative toaddress the challenge posed by cancer recentlyresulted in the ‘‘London Declaration on Can-cer Control in Africa,’’ calling upon researchinstitutions, international organizations, thepharmaceutical industry, national govern-ments, and civil society in developed and de-veloping countries to unite to delivercomprehensive cancer care to the continent.6

Moreover, there is a growing concern that,as people’s lifestyle, nutritional preferences,and nonsedentary work patterns on the conti-nent change, Africa may experience an in-crease in the incidence of those chronicallydebilitating, life-limiting diseases characteristicof resource-abundant nations (e.g., stroke, dia-betes, hypertension, and heart disease).8,9 Ina region already struggling to combat commu-nicable diseases, such noncommunicable ill-nesses will increase the need for effective (interms of costs and outcomes) and appropriatepalliative care.

The NeedThe allocation of sufficient resources to un-

dertake methodologically robust research intopalliative care in sub-Saharan Africa is requiredto inform the delivery of such effective andappropriate care.10e12 Indeed, the growinginterest in establishing an evidence base to un-derpin palliative care service provision in Afri-ca is a component part of a wider impetus toadvance a global palliative care researchagenda, as embodied in the ‘‘Venice Declara-tion.’’13 The Declaration calls for a focus on re-search and education in the development ofpalliative care in developing countries throughcollaboration to address the specific needs ofpatients within their geographical and socio-economic and cultural contexts.

Importantly, this agenda has not been devel-oped in isolation from mainstream African pal-liative care experts, who recognize that ‘‘Clinicaland health service audit and research is desper-ately needed so that we can establish how best todeliver palliative care in the resource-poor set-ting, and to establish an information base rele-vant to the developing world.’’12 This need wasechoed by a comprehensive review of the cur-rent status of palliative care in sub-Saharan Afri-ca, which uncovered a wealth of clinical andacademic experience yet a dearth of methodo-logically robust evidence10d a lamentable factsymptomatic of what has been described as ‘‘mor-ibund’’ African health research generally.14

It is hard to imagine how palliative care canbe expanded to the levels of coverage andquality needed without robust and persuasiveevidence to influence policy, attract funds,and change practice. Systematic reviews dem-onstrating the effectiveness of cancer palliativecare15,16 and HIV palliative care17,18 reportthat the evidence is almost wholly from re-source-rich countries and pre-ARV therapy.Clinical practice and national policy shouldbe influenced by current, relevant, and replica-ble evidence. Currently, this is not possible inthe field of palliative care in Africa, and ashealth service infrastructure improves, pallia-tive care is in competition with other generaland specialist care groups for finite resources.

There is, consequently, a general consensusthat a need exists to address this deficiencyand undertake rigorous palliative care re-search if we are to ensure that, in the spiritof evidence-based health practice:19,20 prac-tices and standards of care provision areunderpinned by evidence rather than anec-dote; lessons learned from service successesare replicated rather than ignored; and limiteddonor funding is spent optimally, with measur-able results, rather than inefficiently withunaccountable outcomes. Moreover, it is im-perative that this research is translational innature, transferring its findings to everyday ser-vice provision, thereby ensuring that staff andpatients experience its tangible benefits.

However, establishing such a palliative careresearch agenda in Africa is not without itschallenges. The Monitoring and EvaluationReference Group (MERG), an internationalmultiprofessional body comprised of clini-cal, academic, and advocacy professionals

306 Vol. 36 No. 3 September 2008Harding et al.

representing six countries (four of which areAfrican) aligned to the African Palliative CareAssociation (APCA), has identified the primarymethodological challenges confronting suchan agenda.

The ChallengesThese primary challenges to conducting

rigorous palliative care research in Africa are:the dearth of validated outcome measures;multiple sources of potential bias; inadequateresearch capacity and skills, plus logistical chal-lenges to data collection and transfer; and theabsence of formalized mechanisms for ethicalresearch in some countries.

Outcome MeasuresThe lack of palliative care outcome mea-

sures developed and validated in Africa is a fun-damental challenge to establishing a rigorousevidence base for the continent. African end-of-life care providers have described the avail-ability of validated tools and methods as a pri-ority for the field.21 Although the scientificprinciples underpinning palliative care re-search are transferable, it is essential that out-come measures used reflect the prevailingdiseases11 (e.g., the unpredictable HIV trajec-tory), the concept of ‘‘total need’’ in a re-source-constrained setting, the family issues(e.g., orphan care) involved, and the basic so-cioeconomic pressures of income generationand poverty. Measures must also use concepts(especially for quality-of-life research) thathave cultural meaning and equivalence amongindigenous populations.22 For example, in theauthors’ experience, concepts such as ‘‘pain’’and ‘‘anxiety’’ can lack both intra- and intercul-tural equivalence among the divergent ethnicgroups across and outside Africa. Moreover,compared to resource-abundant settings, a sig-nificant proportion of palliative care clientsare children (generally defined as a personaged below 15 years). For example, Africa ac-counts for 25% of the 80,000 annual deathsfrom cancer among children globally,23 and90% of the 2.3 million children worldwide liv-ing with HIV.24 However, beyond the FacesPain Scale,25 there is a paucity of validated pe-diatric measures. Also indicative of their lesserand neglected status, it was only recently that

children were included in HIV surveillancestatistics.26

Sources of BiasMeasurement scoring is particularly prob-

lematic when using outcome instruments.Literacy deficiencies preclude the resource-abundant country focus on self-completionquestionnaires. Moreover, the overwhelmingmajority of patients located in African ruralcommunities rarely access a professionallytrained health care worker (routine recourseremains to the traditional healer27), and effec-tive pain relief is rare. Consequently, data col-lection risks the introduction of bias throughacquiescence due to cultural unwillingness tobe critical of the few health care services pro-vided; this jeopardizes the validity of reporteddata.

The current lack of a cadre of African palli-ative care researchers due to underinvestmentalso threatens data validity. Adequate attentionneeds to be devoted to training researchers inbasic research skills (e.g., data collection,cleaning, storage, and analysis), and existingAfrican health researchers must be encour-aged and facilitated to engage in the specificchallenges of palliative care research.

Further challenges are posed by study attri-tion rates. Not only do end-stage patients inAfrica commonly return to their home villageto die,28 but their inability to pay care costscan result in service discontinuity. The inacces-sibility of patients living in rural locales cantranslate into significant time and financial ef-fort for researchers to carry out data collectionon a regular basis. This latter challenge canspecifically result in a sampling bias. Furtherlogistical challenges, such as heavy rains, trans-port limitations, and staff morbidity and mor-tality due to the HIV epidemic,29 can reducesample accrual and retention. Moreover, thelack of accurate population-based epidemio-logical data, particularly for noncommunica-ble diseases,30 prevents probabilistic samplingstrategies.

Lastly, chronic financial resource deficitscan sometimes ‘‘compel’’ service providers tobe uncritical of their outcomes when applyingto funding agencies. Only instilling an organi-zational culture that values the role of projectmonitoring and evaluation, in conjunctionwith a questioning funding culture that

Vol. 36 No. 3 September 2008 307Evidence in African Palliative Care

encourages self-criticism and continuous qual-ity improvement, can address such potentialsources of bias and inaccuracy.

Research Capacity and SkillsInadequate investment in research capacity

in Africa, investment that is presently dispro-portionate to the region’s overall burden ofdisease,31 has the effect of entrenching healthinequalities.12 Even within the presently la-mentable status of health research on the con-tinent, palliative care lags behind otherdisciplines, despite the fact that up to 52% ofAfrican HIV outpatients may be appropriatefor palliative care interventions.32 With few ex-ceptions, funders’ relative disinterest in allo-cating funds to evaluative program activityand in forging a critical mass of African re-searchers, has resulted in an inability to mea-sure service quality and effectiveness andreplicate successes. Building local research ca-pacity is imperative;33 Africans should not bedenied the same right to access evaluated,quality health care as do health service recipi-ents in resource-abundant countries.

Currently, research studies are undertaken inaddition to existing work commitments and of-ten are not allocated dedicated funding. This ar-rangement has often resulted in data collectionbeing perceived as either a burdensome task re-quiring minimalist involvement, or as an indul-gence to be conducted only when convenient,and not as a necessary and critical activity tobe integrated into daily routine service delivery.In short, inadequate infrastructure capacity canpose significant problems in data collection, en-try, and transfer, issues that are compounded byinformation and communication technologydeficiencies.34

Ethical ResearchPatients and families affected by poverty, lack

of health care provision, and the HIV/AIDSepidemic require particular protection fromResearch Ethics Committees. The MERG hasfound that not only do such bodies not alwaysexist locally but, where they do exist, the lackof collaboration between committees may leadto requirements of different protocols andprocedures within multi-center studies.

In addition, the oral rather than written tra-dition evident in Africa has resulted in chal-lenges for research ethics committees in

resource-abundant countries requested to re-view north-south research collaborations con-ducted in resource-limited countries.35 Theoral tradition often views a patient’s word asthe most appropriate signifier of permissionto participate. However, despite the fact thata request for written permission can offendor confuse a potential respondent, requestinga mark or verbal agreement to participate asa substitute for a signature36 may not secureethical approval. At a time when the embry-onic African palliative care research agenda isdependent upon north-south collaborativepartnerships, this is a potentially significantobstacle.

The StrategiesTo address these methodological challenges,

and thereby generate both research personneland robust evidence across Africa, the follow-ing strategies are recommended as a wayforward.

First, due to the relative absence of researchpersonnel in the field, collaboration betweenresearchers in resource-abundant and theresource-constrained countries of Africa isimperative. This collaboration should not becentered around delivering on predeterminedresearch protocols, but rather on more mean-ingful sharing of skills aimed at building indi-vidual and organizational capacity andthereby ensuring that African research staffare ultimately enabled to undertake the rolesof principal investigators (PIs). Research ca-pacity development needs to encompass allphases of the research process, from identifica-tion of appropriate questions, to data analysis,to the drafting of internationally recognizedpeer-reviewed papers.

Second, existing palliative care trainingcourses, which are emerging in greater num-bers in Africa, should integrate researchmethods into their existing curricula for allcadre of staff. Moreover, this research compo-nent must be presented as a necessary and crit-ical component of effective service deliveryand improvement.

Third, PIs must factor in adequate resourcesto provide ongoing technical support to Afri-can centers engaged in research. This includesresearch methods, protocol design, data col-lection, management, cleaning and entry,

308 Vol. 36 No. 3 September 2008Harding et al.

analysis, and reporting. Moreover, promisingnew- or mid-level career professionals commit-ted to palliative care research should be sup-ported by formal developmental programs,such as the new African Palliative ScholarsProgramme.

Fourth, funders should designate resourcesto evaluate care alongside direct care alloca-tion. This will help ensure the effective and sys-tematic documentation of lessons learned andthe replication of successful initiatives andinterventions.

Fifth, research and evaluation studies re-quire project-specific staff to ensure that datacollection and management are completed ina timely fashion in accordance with the studyprotocol requirements and are not relegatedto second place behind clinical activity.

Sixth, multidimensional outcome measuresshould be developed and validated that ad-dress domains of importance to Africa (e.g.,the APCA African Palliative Outcome Scale37).Careful cognitive interviewing and revalidationis required if existing measures are to beapplied in the African setting.

The responsibility for ensuring that thesestrategies are applied rests with: funders whoneed to allocate dedicated resources; educatorswho need to teach research methods and theoperational value of research as part of pallia-tive care education; researchers who need to fos-ter meaningful collaborative partnerships andknowledge transfer; and practitioners who needto create a workplace culture that values therole of research in optimizing patient care.

Research is a standard activity in resource-abundant settings; methodologically robustdata can, and should, be generated on pallia-tive care in Africa, too.

References1. UNAIDS. AIDS epidemic update. 2007. Available

from http://data.unaids.org/pub/EPISlides/2007/2007_epiupdate_en.pdf. Accessed April 21, 2008.

2. UNAIDS. Q&A on HIV/AIDS estimates. 2007.Available from http://www.unaids.org/en/HIV_data/2007EpiUpdate/default.asp. Accessed April 21, 2008.

3. Morris K. Cancer? In Africa? Lancet Oncol2003;4(1):5.

4. Sepulveda C, Habiyambere V, Amandua J, et al.Quality care at the end of life in Africa. Br Med J2003;327(7408):209e213.

5. Ramsay S. Raising the profile of palliative carefor Africa. Lancet 2001;358(9283):734.

6. AfrOx. London declaration on cancer controlin Africa. 2007. Available from http://www.afrox.org/declaration.html. Accessed July 31, 2007.

7. Murray SA, Grant E, Mwangi-Powell F. Health inAfrica: time to wake up to cancer’s toll. Br Med J2005;331(7521):904.

8. Mufunda J, Chatora R, Ndambakuwa Y, et al.Emerging non-communicable disease epidemic inAfrica: preventative measures from the WHO Re-gional Office for Africa. Ethn Dis 2006;16:546e547.

9. World Health Organization. The African Re-gional Health Report: The health of the people. Ge-neva: WHO, 2006.

10. Harding R, Higginson IJ. Palliative care in sub--Saharan Africa. Lancet 2005;365(9475):1971e1977.

11. Higginson IJ, Bruera E. Do we need palliativecare audit in developing countries? Palliat Med2002;16(6):546e547.

12. Mpanga Sebuyira L, Moore J. Palliative care: the21st century challenge. Health Exchange 2003.

13. Adoption of a declaration to develop a globalpalliative care research initiative. Prog Palliat Care2006;14(5):215e217.

14. Volmink J, Dare L. Addressing inequalities in re-search capacity in Africa. Br Med J 2005;331(7519):705e706.

15. Finlay IG, Higginson IJ, Goodwin DM, et al. Pal-liative care in hospital, hospice, at home: resultsfrom a systematic review. Ann Oncol 2002;13(Suppl4):257e264.

16. Higginson IJ, Finlay IG, Goodwin DM, et al. Isthere evidence that palliative care teams alter end-of-life experiences of patients and their caregivers?J Pain Symptom Manage 2003;25(2):150e168.

17. Harding R, Karus D, Easterbrook P, et al. Doespalliative care improve outcomes for patients withHIV/AIDS? A systematic review of the evidence.Sex Transm Infect 2005;81(1):5e14.

18. Harding R, Easterbrook P, Higginson IJ, et al.Access and equity in HIV/AIDS palliative care: areview of the evidence and responses. Palliat Med2005;19(3):251e258.

19. Greenhalgh T, Hurwitz B, eds. Narrative-basedmedicine: Dialogue and discourse in clinical prac-tice. London: BMJ Books, 1998.

20. Straus SE, Richardson W, Rosenberg W,Haynes RB, Sackett DL. Evidence-based medicine:How to practice and teach EBM, 2nd ed. London:Churchill Livingston, 2000.

21. Harding R, Stewart K, Marconi K, O’Neill JF,Higginson IJ. Current HIV/AIDS end-of-life carein Sub-Saharan Africa: a survey of models, services,challenges and priorities. BMC Public Health2003;3:33.

Vol. 36 No. 3 September 2008 309Evidence in African Palliative Care

22. Corless IB, Nicholas PK, Nokes KM. Issues incross-cultural quality-of-life research. J Nurs Schol-arsh 2001;33(1):15e20.

23. Cancer Research UK. Children in the develop-ing world bear the burden of cancer. 2003. Availablefrom http://info.cancerresearchuk.org/news/archive/pressreleases/2003/february/39505. AccessedSeptember 4, 2007.

24. AVERT. HIV and AIDS in Africa. 2007. Availablefrom http://www.avert.org/aafrica.htm. AccessedSeptember 4, 2007.

25. Bieri D, Reeve RA, Champion GD, Addicoat L,Ziegler JB. The Faces Pain Scale for the self-assessment of the severity of pain experiencedby children: development, initial validation, andpreliminary investigation for ratio scale properties.Pain 1990;41(2):139e150.

26. The devastating effects of HIV/AIDS on chil-dren. [Editorial]. Lancet 2006;368(9534):424.

27. Nelms LW, Gorski J. The role of the African tra-ditional healer in women’s health. J Transcult Nurs2006;17(2):184e189.

28. Kikule E. A good death in Uganda: survey ofneeds for palliative care for terminally ill peoplein urban areas. Br Med J 2003;327(7408):192e194.

29. Harries AD. Management of HIV in resource--poor countries, with a focus on sub-Saharan Africa.Lepr Rev 2002;73(3):268e275.

30. Mathers CD, Lopez AD, Murray C. The burdenof disease and mortality by condition: data, methods

and results from 2001. In: Lopez AD, Mathers CD,Ezzati M, Jamison DT, Murray C, eds. Global burdenof disease and risk factors. New York: Oxford Uni-versity Press, 2006: 45e93.

31. Global Forum for Health Research. 10/90 Re-port on Health Research, 2003-04. Geneva: GlobalForum for Health Research, 2004.

32. Collins K, Harding R. Improving HIV outcomesin Sub-Saharan Africa: how much palliative care isneeded? AIDS Care 2007;19(10):1304e1306.

33. Marshall-Lucette S, Corbett K, Lartey N,Opio D, Bikaitwoha ME. Developing locally basedresearch capacity in Uganda. Int Nurs Rev 2007;54(3):227e233.

34. Government of Canada KS. G8 Africa ActionPlandJune 27th 2002. 2006. Available fromhttp://www.g8.utoronto.ca/summit/2002kananaskis/africaplan.html. Accessed August 28, 2007.

35. Chesney M. Dilemmas of interviewing womenwho have given birth in Pakistan. Nurse Res 1998;5(4):57e70.

36. Withell B. A study of the experiences of womenliving with HIV/AIDS in Uganda. Int J Palliat Nurs2000;6(5):234e244.

37. Powell RA, Downing J, Harding R, Mwangi-Powell F, Connor S, for the APCA. Developmentof the APCA African Palliative Outcome Scale.J Pain Symptom Manage 2007;33(2):229e232.