Ethical considerations related to participation and partnership: an investigation of stakeholders’ perceptions of an action-research project on user fee removal for the poorest in Burkina Faso

BMC Medical Ethics

Valéry Ridde²  Patrick Gogognon³  Matthew R Hunt¹ 

[1] Centre for Interdisciplinary Research in Rehabilitation, Montreal, Canada;Research Centre of the University of Montreal Hospital Centre (CRCHUM), Montreal, Canada;Department of Social and Preventive Medicine, University of Montreal School of Public Health, Montreal, Canada

关键词: User fees;    Research ethics;    Partnership;    Participatory research;    Ethics;    Burkina Faso;    Action-research;   

Others  :  799582
DOI  :  10.1186/1472-6939-15-13

 received in 2013-06-21, accepted in 2014-02-07,  发布年份 2014

【 摘 要 】

Background

Healthcare user fees present an important barrier for accessing services for the poorest (indigents) in Burkina Faso and selective removal of fees has been incorporated in national healthcare planning. However, establishing fair, effective and sustainable mechanisms for the removal of user fees presents important challenges. A participatory action-research project was conducted in Ouargaye, Burkina Faso, to test mechanisms for identifying those who are indigents, and funding and implementing user fee removal. In this paper, we explore stakeholder perceptions of ethical considerations relating to participation and partnership arising in the action-research.

Methods

We conducted 39 in-depth interviews to examine ethical issues associated with the action-research. Respondents included 14 individuals identified as indigent through the community selection process, seven members of village selection committees, six local healthcare professionals, five members of the management committees of local health clinics, five members of the research team, and four regional or national policy-makers. Using constant comparative techniques, we carried out an inductive thematic analysis of the collected data.

Results

The Ouargaye project involved a participatory model, included both implementation and research components, and focused on a vulnerable group within small, rural communities. Stakeholder perceptions and experiences relating to the participatory approach and reliance on multiple partnerships in the project were associated with a range of ethical considerations related to 1) seeking common ground through communication and collaboration, 2) community participation and risk of stigmatization, 3) impacts of local funding of the user fee removal, 4) efforts to promote fairness in the selection of the indigents, and 5) power relations and the development of partnerships.

Conclusions

This investigation of the Ouargaye project serves to illuminate the distinctive ethical terrain of a participatory public health action-research project. In carrying out such projects, careful attention and effort is needed to establish and maintain respectful relationships amongst those involved, acknowledge and address differences of power and position, and evaluate burdens and risks for individuals and groups.

【 授权许可】

   
2014 Hunt et al.; licensee BioMed Central Ltd.

【 参考文献 】

• [1]Lee K, Goodman H: Global policy networks: the propagation of health care financing reform since the 1980's. In Health Policy in a Globalising World. Edited by Kelley L, Buse K, Fustukian S. Cambridge: Cambridge University Press; 2002:97-119.
• [2]James CD, Hanson K, McPake B, Balabanova D, Gwatkin D, Hopwood I, Kirunga C, Knippenberg R, Meessen B, Morris SS: To retain or remove user fees?: reflections on the current debate in low-and middle-income countries. Appl Health Econ Health Policy 2006, 5(3):137-153.
• [3]Knippenberg R, Alihonou E, Soucat A, Oyegbite K, Calivis M, Hopwood I, Niimi R, Diallo MP, Conde M, Ofosu‒Amaah S: Implementation of the Bamako Initiative: strategies in Benin and Guinea. Int J Health Plann Manag 1997, 12(S1):S29-S47.
• [4]Gilson L, Doherty J, Loewenson R, Francis V: Challenging inequity through health systems. WHO Commission on Social Determinants of Health. Final Report Knowledge Network Health Systems; 2007. Available from: http://cdrwww.who.int/social_determinants/resources/csdh_media/hskn_final_2007_en.pdf webcite
• [5]Ridde V: “The problem of the worst-off is dealt with after all other issues”: the equity and health policy implementation gap in Burkina Faso. Soc Sci Med 2008, 66(6):1368-1378.
• [6]Stierle F, Kaddar M, Tchicaya A, Schmidt‒Ehry B: Indigence and access to health care in sub‒Saharan Africa. Int J Health Plann Manag 1999, 14(2):81-105.
• [7]Coady D, Grosh ME, Hoddinott J: Targeting of transfers in developing countries: Review of lessons and experience. Washington, D.C.: World Bank Publications; 2004.
• [8]Aryeetey GC, Jehu‒Appiah C, Spaan E, D’Exelle B, Agyepong I, Baltussen R: Identification of poor households for premium exemptions in Ghana’s National Health Insurance Scheme: empirical analysis of three strategies. Trop Med Int Health 2010, 15(12):1544-1552.
• [9]Program UND 2012. https://data.undp.org/dataset/Table-1-Human-Development-Index-and-its-components/wxub-qc5k webcite
• [10]Poverty headcount ratio at $1.25 a day http://data.worldbank.org/indicator/SI.POV.DDAY/countries webcite
• [11]Ministere de la Santé: Document de Politique Sanitaire Nationale, Volume Volume 37. Ouagadougou: Ministere de la Santé; 2000:1-27.
• [12]Bicaba A, Ouedraogo L, Biao M: Plan national de développement sanitaire (PNDS). Evaluation finale Ouagadougou: Ministere de la santé SERSAP 2010.
• [13]Ridde V, Haddad S, Nikiema B, Ouedraogo M, Kafando Y, Bicaba A: Low coverage but few inclusion errors in Burkina Faso: a community-based targeting approach to exempt the indigent from user fees. BMC Public Health 2010, 10(1):631. BioMed Central Full Text
• [14]Ridde V, Bonnet E, Nikiema A, Kadio K: A spatial analysis of a community-based selection of indigents in Burkina Faso. Global Health PromotionIn Press
• [15]Ridde V, Yaogo M, Kafando Y, Kadio K, Ouedraogo M, Bicaba A, Haddad S: Targeting the worst-off for free health care: a process evaluation in Burkina Faso. Eval Program Plann 2011, 34(4):333-342.
• [16]Ridde V, Yaogo M, Kafando Y, Sanfo O, Coulibaly N, Nitiema P, Bicaba A: A community-based targeting approach to exempt the worst-off from user fees in Burkina Faso. J Epidemiol Commun H 2010, 64(01):10-15.
• [17]Gogognon P, Hunt M, Ridde V: Les enjeux éthiques d’une recherche-action sur une sélection communautaire des indigents au Burkina Faso. Éthique and Santé 2012, 9(4):148-155.
• [18]Brydon-Miller M: Ethics and action research: Deepening our commitment to principles of social justice and redefining systems of democratic practice. In The Sage handbook of action research: Participative inquiry and practice. edn. London: Sage Publications; 2008:199-210.
• [19]Greene L: Ethics and community-based participatory research: commentary on Minkler. Health Educ Behav 2004, 31(6):698-701.
• [20]Israel BA, Schulz AJ, Parker EA, Becker AB: Review of community-based research: assessing partnership approaches to improve public health. Annu Rev Public Health 1998, 19:173-202.
• [21]Shore N: Re-Conceptualizing the Belmont Report. J Community Pract 2006, 14(4):5-26.
• [22]Bastida EM, Tseng T-S, McKeever C, Jack L: Ethics and community-based participatory research: perspectives from the field. Health Promot Pract 2010, 11(1):16-20.
• [23]Edwards K, Lund C, Gibson N: Ethical validity: expecting the unexpected in community-based research. Pimatisiwin: A Journal of Aboriginal and Indigenous Community Health 2008, 6(3):17-30.
• [24]Chen DT, Jones L, Gelberg L: Ethics of clinical research within a community-academic partnered participatory framework. Ethnic Dis 2006, 16(1):118-135.
• [25]Wallerstein NB, Duran B: Using community-based participatory research to address health disparities. Health Promotion Practice 2006, 7(3):312-323.
• [26]Brugge D, Kole A: A case study of community-based participatory research ethics: the healthy public housing initiative. Sci Eng Ethics 2003, 9(4):485.
• [27]Greenwood DJ, Brydon-Miller M, Shafer C: Intellectual property and action research. Action Res 2006, 4(1):81-95.
• [28]Wallwork E: Ethical analysis of research partnerships with communities. Kennedy Inst Ethic J 2008, 18(1):57-85.
• [29]Thorne S: Interpretive Description. Walnut Creek California: Left Coast Press; 2008.
• [30]Thorne S, Kirkham SR, O’Flynn-Magee K: The analytic challenge in interpretive description. Int J Qual Methods 2008, 3(1):1-11.
• [31]Hunt MR, Carnevale FA: Moral experience: a framework for bioethics research. J Med Ethics 2011, 37(11):658-662.
• [32]Richards L, Bazeley P: The NVivo Qualitative Project Book. London, UK: Sage Publications Limited; 2000.
• [33]Glaser BG: Remodeling grounded theory. Forum Qualitative Sozialforschung/Forum: Qualitative Social Research 2004.
• [34]Braveman P: Health disparities and health equity: concepts and measurement. Annu Rev Public Health 2006, 27:167-194.
• [35]Ridde V: L’accès des indigents aux services de santé au Burkina Faso: un problème public? Lien social et Politiques 2006, (55):149-163.
• [36]Shore N, Wong KA, Seifer SD, Grignon J, Gamble VN: Introduction to special issue: advancing the ethics of community-based participatory research. J Empir Res Hum Res 2008, 3(2):1-4.
• [37]Brydon-Miller M: Ethics and action research: Deepening our commitment to principles of social justice and redefining systems of democratic practice. In The Sage handbook of action research: Participative inquiry and practice. edn. London: Sage Publications; 2008:202.
• [38]Weijer C, Emanuel EJ: Protecting communities in biomedical research. Science 2000, 289(5482):1142-1144.
• [39]Samb O, Ridde V: Comment assurer l'efficacité de la gratuité sélective des soins au Burkina Faso? L'implication des populations dans la sélection des bénéficiaires. Afrique Contemporaine 2012, 3(243):33-48.
• [40]Tindana PO, Rozmovits L, Boulanger RF, Bandewar SVS, Aborigo RA, Hodgson AVO, Kolopack P, Lavery JV: Aligning community engagement with traditional authority structures in global health research: a case study from Northern Ghana (vol 101, pg 1857, 2011). Am J Public Health 2011, 101(11):2007-2007.
• [41]Miller CM, Tsoka M, Reichert K: Targeting Cash to Malawi's Ultra-Poor: a Mixed Methods Evaluation. Dev Policy Rev 2010, 28(4):481-502.
• [42]Emanuel EJ, Wendler D, Killen J, Grady C: What makes clinical research in developing countries ethical? The benchmarks of ethical research. J Infect Dis 2004, 189(5):930-937.
• [43]Gaventa J, Cornwall A: Power and Knowledge. In The SAGE handbook of action research: Participative inquiry and practice. edn. Edited by Bradbury H, Reason P. London: Sage Publications Limited; 2008:172-189.
• [44]Detardo-Bora KA: Action research in a world of positivist-oriented review boards. Action Res 2004, 2(3):237-253.
• [45]Williamson GR, Prosser S: Action research: politics, ethics and participation. J Adv Nurs 2002, 40(5):587-593.
• [46]Coughlin SS: Ethical issues in epidemiologic research and public health practice. Emerg Themes Epidemiol 2006, 3:16. BioMed Central Full Text
• [47]Ridde V, Capelle F: Research in global health and North-South partnership challenges. Can J Public Health 2011, 102(2):152-156.
• [48]Young IM: Intersecting voices: Dilemmas of gender, political philosophy, and policy. Princeton, NJ: Princeton University Press; 1997.
• [49]Baylis F, Kenny NP, Sherwin S: A relational account of public health ethics. Public Health Eth 2008, 1(3):196-209.