Research in palliative care has increased significantly in the last decade, while the vast majority of the global disease burden occurs in developing countries.
Aims:
To explore the palliative care research activity in Latin America and the Caribbean (LAC) and its visibility in the international palliative care literature, with a special focus on research studies.
Methods:
A bibliometric analysis was conducted in MEDLINE®, Embase®, PsycINFO®, and CINAHL®. Inclusion criteria were: (1) articles published in peer-reviewed scientific journals; (2) main subject was palliative care; (3) research study; (4) the first author or coauthors was based in LAC; and/or (5) the data collected derived from LAC.
Results:
One hundred six articles from 10 countries were identified in the literature research. The first publication dates from 1989 and was a qualitative study in Brazil. This study shows a modest contribution of publications from LAC. However, the volume of publications within the region is distributed unequally, reflecting the heterogeneity of the region: Brazil published more than half of the articles, while 35 countries have no publications. Most of the studies were quantitative research, predominantly cross-sectional studies. Qualitative studies often used interviews. Health care service was the most researched issue. Seventy percent of studies were carried out in institutions.
Conclusions:
Palliative care research should have a place in LAC. The development of a regional research agenda tailored to the needs and features of the region considering the health care structure and local resources available is indispensable.
United Nations-Department of Economic and Social Affairs-Population Division. World Population Prospects: The 2002 Revision. New York: United Nations, 2002.
3.
World Health Organisation (WHO). Supporting National Responses to the Commission on Macroeconomics and Health. Possible elements of an action plan. Geneva: WHO, 2002.
De LimaL. Palliative Care in Latin America [in Spanish]Medicina Paliativa, 2006; 13:1–3.
6.
WenkR, De LimaL, EisenchlasJ. Palliative care research in Latin America: Results of a survey within the scope of the Declaration of Venice. J Palliat Med, 2008; 11:717–722.
MoloneyA. Latin America faces hurdles in health research. Lancet, 2009; 374:1053–1054.
9.
PastranaT, VallathN, MastrojohnJ, NamukwayaE, KumarS, RadbruchL, ClarkD. Disparities in the contribution of low- and middle-income countries to palliative care research. J Pain Symptom Manage, 2010; 39:54–68.
SaavedraJM. The future of Latin American science. Cell Mol Neurobiol, 2002; 22:463–467.
12.
PritchardA. Statistical bibliography or bibliometrics?J Documentation, 1969; 24:348–349.
13.
NalimovVV, MulchenkoZM. Scientometrics. Study of Science as an Information Process[in Russian]Moscow: Nauka Publishers, 1969.
14.
KingDA. The scientific impact of nations. Nature, 2004; 430:311–316.
15.
PayneSA, TurnerJM. Research methodologies in palliative care: A bibliometric analysis. Palliat Med, 2008; 22:336–342.
16.
BorreaniC, MiccinesiG, BrunelliC, LinaM. An increasing number of qualitative research papers in oncology and palliative care: Does it mean a thorough development of the methodology of research?Health Qual Life Outcomes, 2004; 2:7.
17.
HermsenMA, ten HaveHA. Moral problems in palliative care journals. Palliat Med, 2001; 15:425–431.
18.
NeatherlinJS, FoxS. End-of-Life care concepts in Journal of Neuroscience Nursing. J Neurosci Nurs, 2006; 38:342–348, 53.
19.
MehtaNJ, KhanIA, MehtaRN, TejaniF, VasavadaBC, SacchiTJ. End-of-life care-related publications in cardiology journals. Am J Cardiol, 2001; 88:1460–1463, A9.
20.
KirkhamSR, TogniM, PickeringRM. What do we publish?Palliat Med, 2001; 15:359–361.
21.
International Association for Hospice and Palliative Care (IAHPC). The Declaration of Venice: Palliative care research in developing countries. J Pain Palliat Care Pharmacother, 2007; 21:31–33.
SPSS Inc.Statistical Package for the Social Sciences (SPSS Statistics) for Windows, Version 19 [software for statistical analysis]2010.
24.
De LimaL, HardingR, HigginsonIJ. Palliative Care Research in the Developing World: How can we Move Forward?9th Congress of the European Association for Palliative Care, Aachen, Germany, 2005.
25.
HortaAL, AraujoAP, AprileCM, EchalarCM, ParedesFN, CaminadaS. The child with a terminal illness: The reactions of the family, the care given and the difficulties felt by the pediatric unit nurse. Sao Paulo, 1987 [in Portuguese]Rev Esc Enferm USP, 1989; 23:27–38.
VolminkJ, DareL. Addressing inequalities in research capacity in Africa. BMJ, 2005; 331:705–706.
28.
HardingR, PowellRA, DowningJ, ConnorSR, Mwangi-PowellF, DefilippiK, CameronS, GarangangaE, KikuleE, AlexanderC. Generating an African palliative care evidence base: The context, need, challenges, and strategies. J Pain Symptom Manage, 2008; 36:304–309.
29.
LangerA, Diaz-OlavarrietaC, BerdichevskyK, VillarJ. Why is research from developing countries underrepresented in international health literature, and what can be done about it?Bull World Health Organ, 2004; 82:802–803.
30.
WrightM, WoodJ, LynchT, ClarkD. Mapping levels of palliative care development: a global view. J Pain Symptom Manage, 2008; 35:469–485.
31.
KrouseRS, RosenfeldKE, GrantM, AzizN, ByockI, SloanJ, CasarettD. Palliative care research: Issues and opportunities. Cancer Epidemiol Biomarkers Prev, 2004; 13:337–339.
32.
CasarettDJ, KarlawishJH. Are special ethical guidelines needed for palliative care research?J Pain Symptom Manage, 2000; 20:130–139.
33.
GeorgeLK. Research design in end-of-life research: State of science. Gerontologist, 2002; 42,Spec No 3:86–98.
34.
RileyJ, RossJR. Research into care at the end of life. Lancet, 2005; 365:735–737.
35.
PowellRA, DowningJ, RadbruchL, Mwangi-PowellFN, HardingR. Advancing palliative care research in Sub-Saharen Africa. Eur J Palliat Care, 2008; 15:228–233.
36.
PastranaT, JungerS, OstgatheC, ElsnerF, RadbruchL. A matter of definition—Key elements identified in a discourse analysis of definitions of palliative care. Palliat Med, 2008; 22:222–232.
37.
RadbruchL, FoleyK, De LimaL, PraillD, FürstCJ. The Budapest Commitments: Setting the goals. A joint initiative by the European Association for Palliative Care, the International Association for Hospice and Palliative Care and Help the Hospices. Palliat Med, 2007; 21:269–271.
38.
PowellRA, DowningJ, RadbruchL, Mwangi-PowellFN, HardingR. Advancing palliative care research in Sub-Saharan Africa: From the Venice declaration, to Nairobi and beyond. Palliat Med, 2008; 22:885–887.
CostelloA, ZumlaA. Moving to research partnerships in developing countries. BMJ, 2000; 321:827–829.
41.
EdejerTT. North-South research partnerships: The ethics of carrying out research in developing countries. BMJ, 1999; 319:438–441.
42.
BrueraE. Palliative care in Latin America. J Pain Symptom Manage, 1993; 8:365–368.
43.
KleinmanA. The Illness Narratives: Suffering, Healing, the Human Condition. New York: Basic Books, 1988.
44.
International Association for Hospice and Paliative Care (IAHPC). Membership Program. www.hospicecare.com/join.htmSeptember25, 2011.
45.
PampallonaS, BolliniP. Palliative care in developing countries: Why research is needed. J Pain Palliat Care Pharmacother, 2003; 17:171–182discussion 83–84.
