Sustainability of community-based women's groups: reflections from a participatory intervention for newborn and maternal health in Nepal.

Participatory community-based women's group interventions have been successful in improving maternal and newborn survival. In rural Makwanpur, Nepal, exposure to these Participatory Learning and Action groups resulted in a thirty-percent reduction in neonatal mortality rate and significantly fewer maternal deaths. It is often theorised that participatory approaches are more likely to be sustained than top-down approaches, but this is rarely evaluated after the withdrawal of external support. We sought to understand how participatory learning and action (PLA) groups in Makwanpur fared after the supporting non-governmental organisation withdrew their support as well as factors affecting their sustainability. We used mixed methods, conducting a cross-sectional survey of 239 groups, thirty focus group discussions with group members and thirty key informant interviews within twelve-seventeen months after support was withdrawn. Eighty percent of groups were still active which suggests that PLA groups have a high chance of being sustained over time. Groups were more likely to be sustained if the group had local importance and members continued to acquire new knowledge. However, the participatory nature of the group and local embeddedness were not enough to sustain all groups. They also needed leadership capacity, a unifying activity such as a fund, and a strong belief in the value of their meeting to sustain. These key factors should be considered when seeking to enable sustainability of participatory interventions.

The long-term impact of community mobilisation through participatory women's groups on women's agency in the household: A follow-up study to the Makwanpur trial.

Women's groups practicing participatory learning and action (PLA) in rural areas have been shown to improve maternal and newborn survival in low-income countries, but the pathways from intervention to impact remain unclear. We assessed the long-term impact of a PLA intervention in rural Nepal on women's agency in the household. In 2014, we conducted a follow-up study to a cluster randomised controlled trial on the impact of PLA women's groups from 2001-2003. Agency was measured using the Relative Autonomy Index (RAI) and its subdomains. Multi-level regression analyses were performed adjusting for baseline socio-demographic characteristics. We additionally adjusted for potential exposure to subsequent PLA groups based on women's pregnancy status and conduct of PLA groups in areas of residence. Sensitivity analyses were performed using two alternative measures of agency. We analysed outcomes for 4030 mothers (66% of the cohort) who survived and were recruited to follow-up at mean age 39.6 years. Across a wide range of model specifications, we found no association between exposure to the original PLA intervention with women's agency in the household approximately 11.5 years later. Subsequent exposure to PLA groups was not associated with greater agency in the household at follow-up, but some specifications found evidence for reduced agency. Household agency may be a prerequisite for actualising the benefits of PLA groups rather than a consequence.

Prenatal and perinatal risk factors for disability in a rural Nepali birth cohort.

BACKGROUND: Improving newborn health remains a global health priority. Little however is known about the neurodevelopmental consequences for survivors of complications in pregnancy, labour and the neonatal period in in low-income countries outside of small selective and typically urban facility studies. We ask which antenatal, birth and neonatal factors are associated with disability in childhood in a large community birth cohort from rural Nepal. METHODS: 6436 infants were recruited during a cluster randomised control trial (RCT) of participatory women's groups (ISRCTN31137309), of whom 6075 survived beyond 28 days. At mean age of 11∙5 years (range 9.5-13.1), 4219 children (27% lost to follow-up) were available for disability screening which was conducted by face-to-face interview using the Module on Child Functioning and Disability produced by the Washington Group/UNICEF. Hypothesised risk factors for disability underwent multivariable regression modelling. FINDINGS: Overall prevalence of disability was 7.4%. Maternal underweight (OR 1.44 (95% CI 1.01-2.08)), maternal cohabitation under 16 years of age (OR 1.50 (1.13-2.00)), standardised infant weight at 1 month (OR 0.82 (0.71-0.95)) and reported infant diarrhoea and vomiting in the first month (OR 2.48 (1.58-3.89)) were significantly associated with disability adjusted for trial allocation. The majority of hypothesised risk factors, including prematurity, were not significant. INTERPRETATION: Proxies for early marriage and low birth weight and a measure of maternal undernutrition were associated with increased odds of disability. The lack of association of most other recognised risk factors for adverse outcome and disability may be due to survival bias.

Understanding parents' and professionals' knowledge and awareness of autism in Nepal.

Autism is a global phenomenon. Yet, there is a dearth of knowledge of how it is understood and its impact in low-income countries. We examined parents' and professionals' understanding of autism in one low-income country, Nepal. We conducted focus groups and semi-structured interviews with parents of autistic and non-autistic children and education and health professionals from urban and rural settings ( n = 106), asking questions about typical and atypical development and presenting vignettes of children to prompt discussion. Overall, parents of typically developing children and professionals had little explicit awareness of autism. They did, however, use some distinctive terms to describe children with autism from children with other developmental conditions. Furthermore, most participants felt that environmental factors, including in-utero stressors and birth complications, parenting style and home or school environment were key causes of atypical child development and further called for greater efforts to raise awareness and build community capacity to address autism. This is the first study to show the striking lack of awareness of autism by parents and professionals alike. These results have important implications for future work in Nepal aiming both to estimate the prevalence of autism and to enhance support available for autistic children and their families.

Implementing a community-based participatory intervention to improve essential newborn care in rural Nepal.

The persistence of high perinatal and neonatal mortality rates in many developing countries make efforts to improve perinatal care in the home and at local health facilities important public health concerns. We describe a study which aims to evaluate a community-level participatory intervention in rural Nepal. The effectiveness of community-based action research interventions with mothers and other key members of the community in improving perinatal health outcomes is being examined using a cluster randomized, controlled trial covering a population of 28,000 married women of reproductive age. The unit of randomization was the village development committee (VDC): 12 VDCs receive the intervention while 12 serve as controls. The key elements of the intervention are the activities of female facilitators, each of whom works in one VDC facilitating the activities of women's groups in addressing problems in pregnancy, childbirth and the newborn period. Each group moves through a participatory planning cycle of assessment, sharing experiences, planning, action and reassessment, with the aim of improving essential maternal and newborn care. Outcomes assessed are neonatal and perinatal mortality rates, changes in patterns of home care, health care seeking and referral. The study also aims to generate programmatic information on the process of implementation in communities.

Cross sectional, community based study of care of newborn infants in Nepal.

OBJECTIVE: To determine home based newborn care practices in rural Nepal in order to inform strategies to improve neonatal outcome. DESIGN: Cross sectional, retrospective study using structured interviews. SETTING: Makwanpur district, Nepal. PARTICIPANTS: 5411 married women aged 15 to 49 years who had given birth to a live baby in the past year. MAIN OUTCOMES MEASURES: Attendance at delivery, hygiene, thermal care, and early feeding practices. RESULTS: 4893 (90%) women gave birth at home. Attendance at delivery by skilled government health workers was low (334, 6%), as was attendance by traditional birth attendants (267, 5%). Only 461 (8%) women had used a clean home delivery kit, and about half of attendants had washed their hands. Only 3482 (64%) newborn infants had been wrapped within half an hour of birth, and 4992 (92%) had been bathed within the first hour. 99% (5362) of babies were breast fed, 91% (4939) within six hours of birth. Practices with respect to colostrum and prelacteals were not a cause for anxiety. CONCLUSIONS: Health promotion interventions most likely to improve newborn health in this setting include increasing attendance at delivery by skilled service providers, improving information for families about basic perinatal care, promotion of clean delivery practices, early cord cutting and wrapping of the baby, and avoidance of early bathing.