Stakeholder engagement in health-related decision making. The Case of Prevention of Mother-to-Child HIV Transmission in Tanzania
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Background: In Tanzania, the policy of decentralisation and health sector reform advocate bottom-up approaches, and places substantial emphasis on community participation in decision-making processes. Through these reforms the Tanzanian districts have been vested with substantial authority to undertake local planning, set priorities and allocate resources fairly to promote the health of populations with varied needs. A key ingredient is the sector-wide approach, where donors support the budget of the health sector through ‘basket funding’ to enable districts to identify their own priorities. When effectively implemented this approach could facilitate smooth implementation of the decentralisation policy, and allows for a shift from vertically-focused health programmes and centrally-controlled budgets to more comprehensive and integrated health planning, and locally-controlled health budget structures at the district level. The approach is thus to ensure devolvement of decision-making powers to local levels and reduce the influence of the donors. Objectives: The main objective of this study was to explore stakeholder engagement in decision-making and priority-setting processes in the health sector with an emphasis on district-level decision making. The first sub-study (Paper I) had a particular focus on scrutinizing the potential influence of gender, wealth, ethnicity, age, religion and education on decision-making processes. The two other sub-studies aimed to explore decision making and communication processes respectively with a particular focus on the Prevention of mother-to-child transmission of HIV programme (PMTCT) as an attempt to more concretely scrutinize decision-making processes as they unfolded within a particular health project (Papers II and III). Due to the substantial burden of HIV infection from mother to child, the WHO-initiated PMTCT programme was, from the onset, planned as a high-profile and prioritized health intervention. Theoretical frameworks: The research broadly draws on the normative ideal of fair process as outlined in the deliberative democratic theory described by Gutman and Thomson (1996) and Cohen (1997). In deliberative democratic thinking a fair process is one where citizens propose, discuss and generate solutions through open deliberation among equal citizens. In a discussion of diverse levels of stakeholder engagement in decision-making processes, the study refers to engagement theory as developed by Rowe and Frewer (2005), outlining a broad distinction between participation, consultation and communication. To enhance the understanding of the implementation of an intervention, Rogers’ diffusion of innovations theory is drawn upon (Rogers, 2010). The theory consists of five ‘elements’ to assist the assessment of the feasibility of new policy; the policy’s/intervention’s (1) ‘relative advantage’, its (2) ‘compatibility’, (3) ‘complexity’, (4) ‘trialability’ and (5) ‘observability’ (Paper III). Methods: The study was initiated within the frame of the EU-funded project ‘Response to accountable priority setting for trust’ (REACT, 2006–2010) that aimed to strengthen fairness and accountability in priority setting to improve equity and access to quality healthcare at the district level in Tanzania, Kenya and Zambia. The study was carried out in the Mbarali District of Tanzania. A qualitative study design based on explorative approaches was used to generate knowledge on experience with participation in decisionmaking processes. A total of 23 IDIs and a single focus group discussion were carried out during Phase I (within REACT), while 35 in-depth interviews and eight focus group discussions were conducted during Phase II. The IDIs and FGDs were conducted among members of the regional and district health teams, local government officials, health care providers and community members. Informal discussion with individuals variously situated related to the topics was also of substantial value during phase I. Study findings: We find extensive limitations in terms of broad stakeholder engagement in the decision-making processes in healthcare in the study district in Tanzania. Findings in Paper I indicate continued influence of gender, wealth and ethnicity on health care decision-making processes. Religion and age play a far less important role, while education revealed a more mixed picture. Women, poor individuals, members of minority ethnic groups/clans and less-educated individuals were found to be discriminated against in the decision-making bodies. While differentiation based on ethnic criteria was generally condemned, opinions varied among the study informants as to whether differences in terms of participation and impact based on gender and wealth should be considered as fair. Illustrations of discriminatory dynamics were more notable among at the community than at health facility- and district levels, indicating that mechanisms and structures set up to prevent discrimination of this kind in combination with highereducational- level work against such attitudes and dynamics. In Paper II that explored decision-making processes within the Prevention of mother-tochild transmission of HIV programme (PMTCT), a high profile global health intervention, continued challenges of ensuring inclusive and stakeholder-based decision making and communication processes were found. Despite the policy of integrating vertical programmes within broader sector-wide approaches to enhance integrated approaches and the devolving of power to the districts and lower levels, a key finding of the present study was the continued central role of the donor in setting the agenda for the PMTCT programme. The donors followed globally-defined programme priorities which, at the time of the study, emphasized PMTCT ‘coverage’. The implication of the policy was that local priorities, that is the priorities made at health facility- and district levels, the levels with direct experience with the programme, were not funded. Their priorities were to ensure the functioning of already existing PMTCT programmes. Local health planners, on their part, did not prioritize funding to the programme, operating with the perception that the programme is donor-driven and donor-funded. In Paper III, pertaining to communication processes within the PMTCT programme with a particular focus on the dissemination of the continuously changing infant feeding policy to HIV positive mothers, the informants demonstrated partial and incomplete knowledge about the recommendations. Challenges to the successful communication of the infantfeeding guidelines were identified as the slowness of communication, the academic and jargon-ridden English language employed in the manuals, lack of summaries, and lack of supportive supervision to make the guidelines comprehensible. The many practical challenges were amplified by a limited reading culture. Conclusion: The study questions the manner and extent to which the ideals behind the Tanzanian health reforms and the decentralization processes are fulfilled. Rather than a culture of participation and stakeholder involvement, as advocated by the reforms, the findings of the present study add to existing evidence of a continuation of a top-down decision-making culture and a continuation of external influence, whether governmental or donor driven. A history of hierarchical power structures, including colonial and socialist top-down approaches implemented after independence in 1964, have produced a culture where lower-level staff fear open disagreement, making it difficult to meaningfully execute the authority that is granted them. This process in turn re-produces a lack of autonomy and a dependency on donors and on higher-ranking bureaucratic bodies, which seemingly locks local decision-making processes into dynamics over which they have little control.
Title derived from thesis cover, title page does not contain "... in Tanzania"
Består avPaper 1: Shayo, E.H., Norheim, O.F., Mboera, L.E.G., Byskov, J., Maluka, S., Kamuzora, P., Blystad, A (2012). Challenges to fair decision-making processes in the context of health care services: A qualitative assessment from Tanzania, International Journal for Equity in Health 11:30. The article is available at: http://hdl.handle.net/1956/6625
Paper 2: Shayo, E.H., Mboera, L.E.G, Blystad, A (2013). Stakeholders’ participation in planning and priority setting in the context of a decentralized health care system: The case of prevention of mother to child transmission of HIV programme in Tanzania, BMC Health Services Research, 13:273. The article is available at: http://hdl.handle.net/1956/7857
Paper 3: Shayo, E.H., Vaga, B.B., Moland, K.M., Kamuzora, P., Blystad, A. (2014). Challenges of disseminating clinical practice guidelines in a weak health system: The case of HIV and infant feeding recommendations in Tanzania, International Breastfeeding Journal, 9:188. The article is available at: http://hdl.handle.net/1956/9220