Is it feasible to implement a community-based participatory group programme to address issues of access to healthcare for people with disabilities in Luuka district Uganda? A study protocol for a mixed-methods pilot study.

INTRODUCTION: On average, people with disabilities face many difficulties in accessing healthcare and experience worse health outcomes. Yet, evidence on how to overcome these barriers is lacking. Participatory approaches are gaining prominence as they can generate low-cost, appropriate and scalable solutions. This study protocol is for the pilot testing of the co-created Participatory Learning and Action for Disability (PLA-D) groups to assess feasibility. METHODS AND ANALYSIS: We will pilot test PLA-D in five groups in Luuka district, Uganda during 2023. Each group will include approximately 20 members (people with disabilities, family members, carers) who will meet every 2-3 weeks over a 9-11 month period. The groups, guided by a trained facilitator, will identify issues about health and healthcare access and plan and implement locally generated solutions (eg, raising awareness of rights, advocacy and lobbying, establishing health savings and financing schemes). We will collect diverse sources of data to assess feasibility: (1) in-depth interviews and focus group discussions with group participants, non-participants and group facilitators; (2) monitoring of group activities; (3) direct observation of groups and (4) quantitative survey of group participants at baseline and endline. Data analyses will be undertaken to assess feasibility in terms of: acceptability, demand, implementation and practicality. We will develop and refine evaluation tools in preparation for a future trial. ETHICS AND DISSEMINATION: Ethical approval for the study has been received by the London School of Hygiene & Tropical Medicine and the Uganda Virus Research Institute ethics committees. Informed consent will be obtained from all study participants, making adaptations for people with disabilities as necessary. We will reach different groups for our dissemination activities, including (1) people with disabilities (eg, community meetings); (2) policy and programme stakeholders in Uganda and international (eg, individual meetings, evidence briefs) and (3) academics (journal articles, conference/seminar presentations)

The Equity Impact of Community Women's Groups to Reduce Neonatal Mortality: A Meta-analysis of Four Cluster Randomized Trials

Socioeconomic inequalities in neonatal mortality are substantial in many developing countries. Little is known about how to address this problem. Trials in Asia and Africa have shown strong impacts on neonatal mortality of a participatory learning and action intervention with women’s groups. Whether this intervention also reduces mortality inequalities remains unknown. We describe the equity impact of this women’s groups intervention on the neonatal mortality rate (NMR) across socioeconomic strata. We conducted a meta-analysis of all four participatory women’s group interventions that were shown to be highly effective in cluster randomized trials in India, Nepal, Bangladesh and Malawi. We estimated intervention effects on NMR and health behaviours for lower and higher socioeconomic strata using random effects logistic regression analysis. Differences in effect between strata were tested. Analysis of 69120 live births and 2505 neonatal deaths shows that the intervention strongly reduced the NMR in lower (50–63% reduction depending on the measure of socioeconomic position used) and higher (35–44%) socioeconomic strata. The intervention did not show evidence of ‘elite-capture’: among the most marginalized populations, the NMR in intervention areas was 63% lower [95% confidence interval (CI) 48–74%] than in control areas, compared with 35% (95% CI: 15–50%) lower among the less marginalized in the last trial year (P-value for difference between most/less marginalized: 0.009). The intervention strongly improved home care practices, with no systematic socioeconomic differences in effect. Participatory women’s groups with high population coverage benefit the survival chances of newborns from all socioeconomic strata, and perhaps especially those born into the most deprived households

A cluster randomised controlled trial of the community effectiveness of two interventions in rural Malawi to improve health care and to reduce maternal, newborn and infant mortality

<p>Abstract</p> <p>Background</p> <p>The UN Millennium Development Goals call for substantial reductions in maternal and child mortality, to be achieved through reductions in morbidity and mortality during pregnancy, delivery, postpartum and early childhood. The MaiMwana Project aims to test community-based interventions that tackle maternal and child health problems through increasing awareness and local action.</p> <p>Methods/Design</p> <p>This study uses a two-by-two factorial cluster-randomised controlled trial design to test the impact of two interventions. The impact of a community mobilisation intervention run through women's groups, on home care, health care-seeking behaviours and maternal and infant mortality, will be tested. The impact of a volunteer-led infant feeding and care support intervention, on rates of exclusive breastfeeding, uptake of HIV-prevention services and infant mortality, will also be tested. The women's group intervention will employ local female facilitators to guide women's groups through a four-phase cycle of problem identification and prioritisation, strategy identification, implementation and evaluation. Meetings will be held monthly at village level. The infant feeding intervention will select local volunteers to provide advice and support for breastfeeding, birth preparedness, newborn care and immunisation. They will visit pregnant and new mothers in their homes five times during and after pregnancy.</p> <p>The unit of intervention allocation will be clusters of rural villages of 2500-4000 population. 48 clusters have been defined and randomly allocated to either women's groups only, infant feeding support only, both interventions, or no intervention. Study villages are surrounded by 'buffer areas' of non-study villages to reduce contamination between intervention and control areas. Outcome indicators will be measured through a demographic surveillance system. Primary outcomes will be maternal, infant, neonatal and perinatal mortality for the women's group intervention, and exclusive breastfeeding rates and infant mortality for the infant feeding intervention.</p> <p>Structured interviews will be conducted with mothers one-month and six-months after birth to collect detailed quantitative data on care practices and health-care-seeking. Further qualitative, quantitative and economic data will be collected for process and economic evaluations.</p> <p>Trial registration</p> <p>ISRCTN06477126</p

Evidence-based policy-making: the implications of globally-applicable research for context-specific problem-solving in developing countries.

In the past 15 or so years, the "evidence-based medicine" (EBM) framework has become increasingly institutionalized, facilitating its transfer across the globe. In the late 1990s, the basic principles of EBM began to have a marked influence in a number of non-clinical public policy arenas. Policy-makers working in these areas are now being urged to move away from developing policies according to political ideologies to a more legitimate approach based on "scientific fact," a process termed "evidence-based policy-making" (EBPM). The conceptual diffusion of EBM to non-clinical arenas has exposed epistemologically destabilizing views regarding the definition of "science," particularly as it relates to the demands of global versus national/sub-national policy-making. Using the maternal and neonatal subfield as an ethnographic case-study, this paper explores the effects of these divergences on EBPM in 5 developing countries (Bangladesh, Burkina Faso, Ghana, Malawi and Nepal). In doing so, our analysis aims to explain why EBPM has thus far had a limited impact in the area of context-specific programmatic policy-development and implementation at the national and sub-national levels. Results highlight that the political contexts in which EBPM is played out promote uniformity of methodological and policy approaches, despite the fact that disciplinary diversity is being called for repeatedly in the public health literature. Even in situations where national EBPM diverges from international priorities, national evidence-based policies are found to hold little weight in countering global policy interests, which some informants claim are themselves legitimated, rather than informed, by evidence. Informants also highlight the way interpretations of research findings are shaped by the broader political context within which donors set priorities and distribute limited resources - contexts that are driven by the need to provide generalisable research recommendations based on scientifically replicable methods. Added to this are clear rifts between senior and junior-level experts within countries that constrain national and sub-national research agendas from serving as tools for empowered knowledge production and problem-solving. We conclude by arguing for diverse forms of research that can more effectively address context-specific problems. While such diversity may render EBPM more conflict-ridden, debate is by no means an undesirable characteristic in any evolving system of knowledge, for it has the potential to foster critical insight and localized change

Evidence-based policy-making: The implications of globally-applicable research for context-specific problem-solving in developing countries

In the past 15 or so years, the "evidence-based medicine" (EBM) framework has become increasingly institutionalized, facilitating its transfer across the globe. In the late 1990s, the basic principles of EBM began to have a marked influence in a number of non-clinical public policy arenas. Policy-makers working in these areas are now being urged to move away from developing policies according to political ideologies to a more legitimate approach based on "scientific fact," a process termed "evidence-based policy-making" (EBPM). The conceptual diffusion of EBM to non-clinical arenas has exposed epistemologically destabilizing views regarding the definition of "science," particularly as it relates to the demands of global versus national/sub-national policy-making. Using the maternal and neonatal subfield as an ethnographic case-study, this paper explores the effects of these divergences on EBPM in 5 developing countries (Bangladesh, Burkina Faso, Ghana, Malawi and Nepal). In doing so, our analysis aims to explain why EBPM has thus far had a limited impact in the area of context-specific programmatic policy-development and implementation at the national and sub-national levels. Results highlight that the political contexts in which EBPM is played out promote uniformity of methodological and policy approaches, despite the fact that disciplinary diversity is being called for repeatedly in the public health literature. Even in situations where national EBPM diverges from international priorities, national evidence-based policies are found to hold little weight in countering global policy interests, which some informants claim are themselves legitimated, rather than informed, by evidence. Informants also highlight the way interpretations of research findings are shaped by the broader political context within which donors set priorities and distribute limited resources - contexts that are driven by the need to provide generalisable research recommendations based on scientifically replicable methods. Added to this are clear rifts between senior and junior-level experts within countries that constrain national and sub-national research agendas from serving as tools for empowered knowledge production and problem-solving. We conclude by arguing for diverse forms of research that can more effectively address context-specific problems. While such diversity may render EBPM more conflict-ridden, debate is by no means an undesirable characteristic in any evolving system of knowledge, for it has the potential to foster critical insight and localized change.Anthropology of science Evidence-based policy-making Evidence-based medicine Maternal health Neonatal health Public health politics Developing countries

Alma-Ata: Rebirth and revision 5 - Community participation: lessons for maternal, newborn, and child health

Primary health care was ratified as the health policy of WHO member states in 1978.(1) Participation in health care was a key principle in the Alma-Ata Declaration. In developing countries, antenatal, delivery, and postnatal experiences for women usually take place in communities rather than health facilities. Strategies to improve maternal and child health should therefore involve the community as a complement to any facility-based component. The fourth article of the Declaration stated that, people have the right and duty to participate individually and collectively in the planning and implementation of their health care , and the seventh article stated that primary health care requires and promotes maximum community and individual self-reliance and participation in the planning, organization, operation and control of primary health care . But is community participation an essential prerequisite for better health outcomes or simply a useful but non-essential companion to the delivery of treatments and preventive health education? Might it be essential only as a transitional strategy: crucial for the poorest and most deprived populations but largely irrelevant once health care systems are established? Or is the failure to incorporate community participation into large-scale primary health care programmes a major reason for why we are failing to achieve Millennium Development Goals (MDGs) 4 and 5 for reduction of maternal and child mortality

Effect of women's groups and volunteer peer counselling on rates of mortality, morbidity, and health behaviours in mothers and children in rural Malawi (MaiMwana): a factorial, cluster-randomised controlled trial.

BACKGROUND: Women's groups and health education by peer counsellors can improve the health of mothers and children. We assessed their effects on mortality and breastfeeding rates in rural Malawi. METHODS: We did a 2×2 factorial, cluster-randomised trial in 185,888 people in Mchinji district. 48 equal-sized clusters were randomly allocated to four groups with a computer-generated number sequence. 24 facilitators guided groups through a community action cycle to tackle maternal and child health problems. 72 trained volunteer peer counsellors made home visits at five timepoints during pregnancy and after birth to support breastfeeding and infant care. Primary outcomes for the women's group intervention were maternal, perinatal, neonatal, and infant mortality rates (MMR, PMR, NMR, and IMR, respectively); and for the peer counselling were IMR and exclusive breastfeeding (EBF) rates. Analysis was by intention to treat. The trial is registered as ISRCTN06477126. FINDINGS: We monitored outcomes of 26,262 births between 2005 and 2009. In a factorial model adjusted only for clustering and the volunteer peer counselling intervention, in women's group areas, for years 2 and 3, we noted non-significant decreases in NMR (odds ratio 0.93, 0.64-1.35) and MMR (0.54, 0.28-1.04). After adjustment for parity, socioeconomic quintile, and baseline measures, effects were larger for NMR (0.85, 0.59-1.22) and MMR (0.48, 0.26-0.91). Because of the interaction between the two interventions, a stratified analysis was done. For women's groups, in adjusted analyses, MMR fell by 74% (0.26, 0.10-0.70), and NMR by 41% (0.59, 0.40-0.86) in areas with no peer counsellors, but there was no effect in areas with counsellors (1.09, 0.40-2.98, and 1.38, 0.75-2.54). Factorial analysis for the peer counselling intervention for years 1-3 showed a fall in IMR of 18% (0.82, 0.67-1.00) and an improvement in EBF rates (2.42, 1.48-3.96). The results of the stratified, adjusted analysis showed a 36% reduction in IMR (0.64, 0.48-0.85) but no effect on EBF (1.18, 0.63-2.25) in areas without women's groups, and in areas with women's groups there was no effect on IMR (1.05, 0.82-1.36) and an increase in EBF (5.02, 2.67-9.44). The cost of women's groups was US$114 per year of life lost (YLL) averted and that of peer counsellors was$33 per YLL averted, using stratified data from single intervention comparisons. INTERPRETATION: Community mobilisation through women's groups and volunteer peer counsellor health education are methods to improve maternal and child health outcomes in poor rural populations in Africa. FUNDING: Saving Newborn Lives, UK Department for International Development, and Wellcome Trust