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).

Participatory learning and action cycles with women's groups to prevent neonatal death in low-resource settings: A multi-country comparison of cost-effectiveness and affordability.

WHO recommends participatory learning and action cycles with women's groups as a cost-effective strategy to reduce neonatal deaths. Coverage is a determinant of intervention effectiveness, but little is known about why cost-effectiveness estimates vary significantly. This article reanalyses primary cost data from six trials in India, Nepal, Bangladesh and Malawi to describe resource use, explore reasons for differences in costs and cost-effectiveness ratios, and model the cost of scale-up. Primary cost data were collated, and costing methods harmonized. Effectiveness was extracted from a meta-analysis and converted to neonatal life-years saved. Cost-effectiveness ratios were calculated from the provider perspective compared with current practice. Associations between unit costs and cost-effectiveness ratios with coverage, scale and intensity were explored. Scale-up costs and outcomes were modelled using local unit costs and the meta-analysis effect estimate for neonatal mortality. Results were expressed in 2016 international dollars. The average cost was $203 (range: $61-$537) per live birth. Start-up costs were large, and spending on staff was the main cost component. The cost per neonatal life-year saved ranged from $135 to $1627. The intervention was highly cost-effective when using income-based thresholds. Variation in cost-effectiveness across trials was strongly correlated with costs. Removing discounting of costs and life-years substantially reduced all cost-effectiveness ratios. The cost of rolling out the intervention to rural populations ranges from 1.2% to 6.3% of government health expenditure in the four countries. Our analyses demonstrate the challenges faced by economic evaluations of community-based interventions evaluated using a cluster randomized controlled trial design. Our results confirm that women's groups are a cost-effective and potentially affordable strategy for improving birth outcomes among rural populations.

The equity impact of community women's groups to reduce neonatal mortality: a meta-analysis of four cluster randomized trials.

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Community-linked maternal death review (CLMDR) to measure and prevent maternal mortality: a pilot study in rural Malawi.

BACKGROUND: In Malawi, maternal mortality remains high. Existing maternal death reviews fail to adequately review most deaths, or capture those that occur outside the health system. We assessed the value of community involvement to improve capture and response to community maternal deaths. METHODS: We designed and piloted a community-linked maternal death review (CLMDR) process in Mchinji District, Malawi, which partnered community and health facility stakeholders to identify and review maternal deaths and generate actions to prevent future deaths. The CLMDR process involved five stages: community verbal autopsy, community and facility review meetings, a public meeting and bimonthly reviews involving both community and facility representatives. RESULTS: The CLMDR process was found to be comparable to a previous research-driven surveillance system at identifying deaths in Mchinji District (population 456,500 in 2008). 52 maternal deaths were identified between July 2011 and June 2012, 27 (52%) of which would not have been identified without community involvement. Based on district estimates of population (500,000) and crude birth rate (35 births per 1000 population), the maternal mortality ratio was around 300 maternal deaths per 100,000 live births. Of the 41 cases that started the CLMDR process, 28 (68%) completed all five stages. We found the CLMDR process to increase the quantity of information available and to involve a wider range of stakeholders in maternal death review (MDR). The process resulted in high rates of completion of community-planned actions (82%), and district hospital (67%) and health centre (65%) actions to prevent maternal deaths. CONCLUSIONS: CLMDR is an important addition to the established forms of MDR. It shows potential as a maternal death surveillance system, and may be applicable to similar contexts with high maternal mortality.

Effects of quality improvement in health facilities and community mobilization through women's groups on maternal, neonatal and perinatal mortality in three districts of Malawi: MaiKhanda, a cluster randomized controlled effectiveness trial.

BACKGROUND: Maternal, perinatal and neonatal mortality remains high in low-income countries. We evaluated community and facility-based interventions to reduce deaths in three districts of Malawi. METHODS: We evaluated a rural participatory women's group community intervention (CI) and a quality improvement intervention at health centres (FI) via a two-by-two factorial cluster randomized controlled trial. Consenting pregnant women were followed-up to 2 months after birth using key informants. Primary outcomes were maternal, perinatal and neonatal mortality. Clusters were health centre catchment areas assigned using stratified computer-generated randomization. Following exclusions, including non-birthing facilities, 61 clusters were analysed: control (17 clusters, 4912 births), FI (15, 5335), CI (15, 5080) and FI + CI (14, 5249). This trial was registered as International Standard Randomised Controlled Trial [ISRCTN18073903]. Outcomes for 14,576 and 20,576 births were recorded during baseline (June 2007-September 2008) and intervention (October 2008-December 2010) periods. RESULTS: For control, FI, CI and FI + CI clusters neonatal mortality rates were 34.0, 28.3, 29.9 and 27.0 neonatal deaths per 1000 live births and perinatal mortality rates were 56.2, 55.1, 48.0 and 48.4 per 1000 births, during the intervention period. Adjusting for clustering and stratification, the neonatal mortality rate was 22% lower in FI + CI than control clusters (OR = 0.78, 95% CI 0.60-1.01), and the perinatal mortality rate was 16% lower in CI clusters (OR = 0.84, 95% CI 0.72-0.97). We did not observe any intervention effects on maternal mortality. CONCLUSIONS: Despite implementation problems, a combined community and facility approach using participatory women's groups and quality improvement at health centres reduced newborn mortality in rural Malawi.

A systematic review and thematic synthesis of qualitative studies on maternal emergency transport in low- and middle-income countries.

BACKGROUND: Most maternal deaths are preventable with emergency obstetric care; therefore, ensuring access is essential. There is little focused information on emergency transport of pregnant women. OBJECTIVES: The literature on emergency transport of pregnant women in low- and middle-income countries (LMICs) was systematically reviewed and synthesized to explore current practices, barriers, and facilitators for transport utilization. SEARCH STRATEGY: MEDLINE, EMBASE, BNI, Cochrane Library, CINAHL, African Index Medicus, ASSIA, QUALIDATA, RHL, and Science Citation Index (inception to April 2012) were searched without language restriction. SELECTION CRITERIA: Studies using qualitative methodology and reporting on emergency transportation in LMICs were included. DATA COLLECTION AND ANALYSIS: Thematic framework and synthesis through examination and translation of common elements were used to analyze and synthesize the data. MAIN RESULTS: Twenty-nine articles were included. Eight major themes were identified: time for transport; transport options; geography; local support; autonomy; culture; finance; and ergonomics. Key issues were transport availability; transport speed; terrain; meteorology; support; dependence for decision making; cultural issues; cost; and lack of safe, comfortable positioning during transport. CONCLUSION: Themes should be appreciated within local contexts to illuminate barriers and facilitators. Potential solutions include motorcycle ambulance programs, collaboration with taxi services, community education, subsidies, and vehicle maintenance.

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.

Women's groups practising participatory learning and action to improve maternal and newborn health in low-resource settings: a systematic review and meta-analysis.

BACKGROUND: Maternal and neonatal mortality rates remain high in many low-income and middle-income countries. Different approaches for the improvement of birth outcomes have been used in community-based interventions, with heterogeneous effects on survival. We assessed the effects of women's groups practising participatory learning and action, compared with usual care, on birth outcomes in low-resource settings. METHODS: We did a systematic review and meta-analysis of randomised controlled trials undertaken in Bangladesh, India, Malawi, and Nepal in which the effects of women's groups practising participatory learning and action were assessed to identify population-level predictors of effect on maternal mortality, neonatal mortality, and stillbirths. We also reviewed the cost-effectiveness of the women's group intervention and estimated its potential effect at scale in Countdown countries. FINDINGS: Seven trials (119,428 births) met the inclusion criteria. Meta-analyses of all trials showed that exposure to women's groups was associated with a 37% reduction in maternal mortality (odds ratio 0.63, 95% CI 0.32-0.94), a 23% reduction in neonatal mortality (0.77, 0.65-0.90), and a 9% non-significant reduction in stillbirths (0.91, 0.79-1.03), with high heterogeneity for maternal (I(2)=58.8%, p=0.024) and neonatal results (I(2)=64.7%, p=0.009). In the meta-regression analyses, the proportion of pregnant women in groups was linearly associated with reduction in both maternal and neonatal mortality (p=0.026 and p=0.011, respectively). A subgroup analysis of the four studies in which at least 30% of pregnant women participated in groups showed a 55% reduction in maternal mortality (0.45, 0.17-0.73) and a 33% reduction in neonatal mortality (0.67, 0.59-0.74). The intervention was cost effective by WHO standards and could save an estimated 283,000 newborn infants and 41,100 mothers per year if implemented in rural areas of 74 Countdown countries. INTERPRETATION: With the participation of at least a third of pregnant women and adequate population coverage, women's groups practising participatory learning and action are a cost-effective strategy to improve maternal and neonatal survival in low-resource settings. FUNDING: Wellcome Trust, Ammalife, and National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care for Birmingham and the Black Country programme.

Development and formative evaluation of a visual e-tool to help decision makers navigate the evidence around health financing.

BACKGROUND: There are calls for low and middle income countries to develop robust health financing policies to increase service coverage. However, existing evidence around financing options is complex and often difficult for policy makers to access. OBJECTIVE: To summarize the evidence on the impact of financing health systems and develop an e-tool to help decision makers navigate the findings. METHODS: After reviewing the literature, we used thematic analysis to summarize the impact of 7 common health financing mechanisms on 5 common health system goals. Information on the relevance of each study to a user's context was provided by 11 country indicators. A Web-based e-tool was then developed to assist users in navigating the literature review. This tool was evaluated using feedback from early users, collected using an online survey and in-depth interviews with key informants. RESULTS: The e-tool provides graphical summaries that allow a user to assess the following parameters with a single snapshot: the number of relevant studies available in the literature, the heterogeneity of evidence, where key evidence is lacking, and how closely the evidence matches their own context. Users particularly liked the visual display and found navigating the tool intuitive. However there was concern that a lack of evidence on positive impact might be construed as evidence against a financing option and that the tool might over-simplify the available financing options. CONCLUSIONS: Complex evidence can be made more easily accessible and potentially more understandable using basic Web-based technology and innovative graphical representations that match findings to the users' goals and context.

Research report--Volunteer infant feeding and care counselors: a health education intervention to improve mother and child health and reduce mortality in rural Malawi.

The aim of this report is to describe a health education intervention involving volunteer infant feeding and care counselors being implemented in Mchinji district, Malawi. The intervention was established in January 2004 and involves 72 volunteer infant feeding and care counselors, supervised by 24 government Health Surveillance Assistants, covering 355 villages in Mchinji district. It aims to change the knowledge, attitudes and behaviour of women to promote exclusive breastfeeding and other infant care practices. The main target population are women of child bearing age who are visited at five key points during pregnancy and after birth. Where possible, their partners are also involved. The visits cover exclusive breastfeeding and other important neonatal and infant care practices. Volunteers are provided with an intervention manual and picture book. Resource inputs are low and include training allowances and equipment for counselors and supervisors, and a salary, equipment and materials for a coordinator. It is hypothesized that the counselors will encourage informational and attitudinal change to enhance motivation and risk reduction skills and self-efficacy to promote exclusive breastfeeding and other infant care practices and reduce infant mortality. The impact is being evaluated through a cluster randomised controlled trial and results will be reported in 2012.

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.

BACKGROUND: 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. METHODS/DESIGN: 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.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.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. TRIAL REGISTRATION: ISRCTN06477126.

MaiMwana women's groups: a community mobilisation intervention to improve mother and child health and reduce mortality in rural Malawi.

This article presents a detailed description of a community mobilization intervention involving women's groups in Mchinji District, Malawi. The intervention was implemented between 2005 and 2010. The intervention aims to build the capacities of communities to take control of the mother and child health issues that affect them. To achieve this it comprises trained local female facilitators establishing groups and using a manual, participatory rural appraisal tools and picture cards to guide them through a community action cycle to identify and implement solutions to mother and child health problems. Significant resource inputs include salaries for facilitators and supervisors, and training, equipment and materials to support their work with groups. It is hypothesized that the groups will catalyse community collective action to address mother and child health issues and improve the health and reduce the mortality of mothers and children. Their impact, implementation and cost-effectiveness have been rigorously evaluated through a randomized controlled trial design. The results of these evaluations will be reported in 2011.

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.

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?

Women's groups' perceptions of maternal health issues in rural Malawi.

BACKGROUND: Improvements in preventive and care-seeking behaviours to reduce maternal mortality in rural Africa depend on the knowledge and attitudes of women and communities. Surveys have indicated a poor awareness of maternal health problems by individual women. We report the perceptions of women's groups to such issues in the rural Mchinji district of Malawi. METHODS: Participatory women's groups in the Mchinji district identified maternal health problems (172 groups, 3171 women) and prioritised problems they considered most important (171 groups, 2833 women). In-depth qualitative data was obtained through six focus-group discussions with the women's groups, three with women's group facilitators, and four interviews with facilitator supervisors. FINDINGS: The maternal health problems most commonly identified by more than half the groups were anaemia (87%), malaria (80%), retained placenta (77%), obstructed labour (76%), malpresentation (71%), antepartum and postpartum haemorrhage (70% each), and pre-eclampsia (56%). The five problems prioritised as most important were anaemia (sum of rank score 304), malpresentation (295), retained placenta (277), obstructed labour (276). and postpartum haemorrhage (275). HIV/AIDS and sepsis were identified or prioritised much less because complexity and contextual factors hindered their consideration. INTERPRETATION: Rural Malawian women meeting in participatory groups showed a developed awareness of maternal health problems and the concern and motivation to address them. Community mobilisation strategies, such as women's groups, might be effective at reducing maternal mortality because they can draw on the collective capacity in communities to solve problems and make women's voices heard by decision-makers.