Who are dying and why? A case series study of maternal deaths in Nepal.

OBJECTIVES: To identify delays and associated factors for maternal deaths in Nepal. DESIGN: A cross-sectional case series study of maternal deaths. An integrated verbal and social autopsy tool was used to collect quantitative and qualitative information regarding three delays. We recorded death accounts and conducted social autopsy by means of community Focus Group Discussions for each maternal death; and analysed data by framework analysis. SETTING: Sixty-two maternal deaths in six districts in three provinces of Nepal. RESULTS: Nearly half of the deceased women (45.2%) were primiparous and one-third had no formal education. About 40% were from Terai/Madhesi and 30.6% from lower caste. The most common place of death was private hospitals (41.9%), followed by public hospitals (29.1%). Nearly three-fourth cases were referred to higher health facilities and median time (IQR) of stay at the lower health facility was 120 (60-180) hours. Nearly half of deaths (43.5%) were attributable to more than one delay while first and third delay each contributed equally (25.8%). Lack of perceived need; perceived cost and low status; traditional beliefs and practices; physically inaccessible facilities and lack of service readiness and quality care were important factors in maternal deaths. CONCLUSIONS: The first and third delays were the equal contributors of maternal deaths. Interventions related to birth preparedness, economic support and family planning need to be focused on poor and marginalised communities. Community management of quick transportation, early diagnosis of pregnancy risks, accommodation facilities near the referral hospitals and dedicated skilled manpower with adequate medicines, equipment and blood supplies in referral hospitals are needed for further reduction of maternal deaths in Nepal.

Health management committee strengthening and community mobilisation through women's groups to improve trained health worker attendance at birth in rural Nepal: a cluster randomised controlled trial.

BACKGROUND: Engaging citizens and communities to make services accountable is vital to achieving health development goals. Community participation in health management committees can increase public accountability of health services. We conducted a cluster randomised controlled trial to test the impact of strengthened health management committees (HMCs) and community mobilisation through women's groups on institutional deliveries and deliveries by trained health workers in rural Nepal. METHODS: The study was conducted in all Village Development Committee clusters in the hills district of Makwanpur (population of 420,500). In 21 intervention clusters, we conducted three-day workshops with HMCs to improve their capacity for planning and action and supported female community health volunteers to run women's groups. These groups met once a month and mobilised communities to address barriers to institutional delivery through participatory learning and action cycles. We compared this intervention with 22 control clusters. Prospective surveillance from October 2010 to the end of September 2012 captured complete data on 13,721 deliveries in intervention and control areas. Analysis was by intention to treat. RESULTS: The women's group intervention was implemented as intended, but we were unable to support HMCs as planned because many did not meet regularly. The activities of community based organisations were systematically targeted at control clusters, which meant that there were no true 'control' clusters. 39% (5403) of deliveries were in health institutions and trained health workers attended most of them. There were no differences between trial arms in institutional delivery uptake (1.45, 0.76-2.78) or attendance by trained health workers (OR 1.43, 95% CI 0.74-2.74). CONCLUSIONS: The absence of a true counterfactual and inadequate coverage of the HMC strengthening intervention impedes our ability to draw conclusions. Further research is needed to test the effectiveness of strengthening public accountability mechanisms on increased utilisation of services at delivery. TRIAL REGISTRATION: Current Controlled Trials ISRCTN99834806. Date of registration:28/09/10.

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 Estimated Prevalence of Autism in School-Aged Children Living in Rural Nepal Using a Population-Based Screening Tool.

Few data exist on the prevalence of autism in low-income countries. We translated, adapted and tested the acceptability of a Nepali-language version of a screening tool for autism (Autism Quotient-10). Using this tool, we estimated autism prevalence in 4098 rural Nepali children aged 9-13 years. Fourteen children scored > 6 out of 10, indicative of elevated autistic symptomatology, of which 13 also screened positive for disability. If the AQ-10 screening tool is as sensitive and specific in the Nepali population as it is in the UK, this would yield an estimated true prevalence of 3 in 1000 (95% confidence interval 2-5 in 1000). Future research is required to validate this tool through in-depth assessments of high-scoring children.

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.

Cause-specific neonatal mortality: analysis of 3772 neonatal deaths in Nepal, Bangladesh, Malawi and India.

OBJECTIVE: Understanding the causes of death is key to tackling the burden of three million annual neonatal deaths. Resource-poor settings lack effective vital registration systems for births, deaths and causes of death. We set out to describe cause-specific neonatal mortality in rural areas of Malawi, Bangladesh, Nepal and rural and urban India using verbal autopsy (VA) data. DESIGN: We prospectively recorded births, neonatal deaths and stillbirths in seven population surveillance sites. VAs were carried out to ascertain cause of death. We applied descriptive epidemiological techniques and the InterVA method to characterise the burden, timing and causes of neonatal mortality at each site. RESULTS: Analysis included 3772 neonatal deaths and 3256 stillbirths. Between 63% and 82% of neonatal deaths occurred in the first week of life, and males were more likely to die than females. Prematurity, birth asphyxia and infections accounted for most neonatal deaths, but important subnational and regional differences were observed. More than one-third of deaths in urban India were attributed to asphyxia, making it the leading cause of death in this setting. CONCLUSIONS: Population-based VA methods can fill information gaps on the burden and causes of neonatal mortality in resource-poor and data-poor settings. Local data should be used to inform and monitor the implementation of interventions to improve newborn health. High rates of home births demand a particular focus on community interventions to improve hygienic delivery and essential newborn care.

Disabled women׳s maternal and newborn health care in rural Nepal: a qualitative study.

OBJECTIVE: there is little evidence about disabled women׳s access to maternal and newborn health services in low-income countries and few studies consult disabled women themselves to understand their experience of care and care seeking. Our study explores disabled women׳s experiences of maternal and newborn care in rural Nepal. DESIGN: we used a qualitative methodology, using semi-structured interviews. SETTING: rural Makwanpur District of central Nepal. PARTICIPANTS: we purposively sampled married women with different impairments who had delivered a baby in the past 10 years from different topographical areas of the district. We also interviewed maternal health workers. We compared our findings with a recent qualitative study of non-disabled women in the same district to explore the differences between disabled and non-disabled women. FINDINGS: married disabled women considered pregnancy and childbirth to be normal and preferred to deliver at home. Issues of quality, cost and lack of family support were as pertinent for disabled women as they were for their non-disabled peers. Health workers felt unprepared to meet the maternal health needs of disabled women. KEY CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: integration of disability into existing Skilled Birth Attendant training curricula may improve maternal health care for disabled women. There is a need to monitor progress of interventions that encourage institutional delivery through the use of disaggregated data, to check that disabled women are benefiting equally in efforts to improve access to maternal health care.

Exploring the first delay: a qualitative study of home deliveries in Makwanpur district Nepal.

BACKGROUND: In many low-income countries women tend to deliver at home, and delays in receiving appropriate maternal care can be fatal. A contextual understanding of these delays is important if countries are to meet development targets for maternal health. We present qualitative research with women who delivered at home in rural Nepal, to gain a contemporary understanding of the context where we are testing the effectiveness of an intervention to increase institutional deliveries. METHODS: We purposively sampled women who had recently delivered at home and interviewed them to explore their reasons for home delivery. Interviews were recorded, transcribed and analysed using thematic content analysis. We used the 'delays' model discussed in the literature to frame our analysis. RESULTS: Usually a combination of factors prevented women from delivering in health institutions. Many women were aware of the benefits of institutional delivery yet their status in the home restricted their access to health facilities. Often they did not wish to bring shame on their family by going against their wishes, or through showing their body in a health institution. They often felt unable to demand the organisation of transportation because this may cause financial problems for their family. Some felt that government incentives were insufficient. Often, a lack of family support at the time of delivery meant that women delivered at home. Past bad experience, and poor quality health services, also prevented women from having an institutional delivery. CONCLUSIONS: Formative research is important to develop an understanding of local context. Sociocultural issues, perceived accessibility of health services, and perceived quality of care were all important barriers preventing institutional delivery. Targeting one factor alone may not be effective in increasing institutional deliveries. Our intervention encourages communities to develop local responses to address the factors preventing institutional delivery through women's groups and improved health facility management. We will monitor perceptions of health services over time to help us understand the effectiveness of the intervention.

Community mobilisation and health management committee strengthening to increase birth attendance by trained health workers in rural Makwanpur, Nepal: study protocol for a cluster randomised controlled trial.

BACKGROUND: Birth attendance by trained health workers is low in rural Nepal. Local participation in improving health services and increased interaction between health systems and communities may stimulate demand for health services. Significant increases in birth attendance by trained health workers may be affected through community mobilisation by local women's groups and health management committee strengthening. We will test the effect of community mobilisation through women's groups, and health management committee strengthening, on institutional deliveries and home deliveries attended by trained health workers in Makwanpur District. DESIGN: Cluster randomised controlled trial involving 43 village development committee clusters. 21 clusters will receive the intervention and 22 clusters will serve as control areas. In intervention areas, Female Community Health Volunteers are supported in convening monthly women's groups. The groups work through an action research cycle in which they consider barriers to institutional delivery, plan and implement strategies to address these barriers with their communities, and evaluate their progress. Health management committees participate in three-day workshops that use appreciative inquiry methods to explore and plan ways to improve maternal and newborn health services. Follow-up meetings are conducted every three months to review progress. Primary outcomes are institutional deliveries and home deliveries conducted by trained health workers. Secondary outcome measures include uptake of antenatal and postnatal care, neonatal mortality and stillbirth rates, and maternal morbidity. TRIAL REGISTRATION NUMBER: ISRCTN99834806.

Utilization and management of maternal and child health funds in rural Nepal.

Maternal and neonatal mortality rates are highest in the poorest countries, and financial barriers impede access to health care. Community loan funds can increase access to cash in rural areas, thereby reducing delays in care seeking. As part of a participatory intervention in rural Nepal, community women's groups initiated and managed local funds. We explore the factors affecting utilization and management of these funds and the role of the funds in the success of the women's group intervention. We conducted a qualitative study using focus group discussions, group interviews and unstructured observations. Funds may increase access to care for members of trusted 'insider' families adjudged as able to repay loans. Sustainability and sufficiency of funds was a concern but funds increased women's independence and enabled timely care seeking. Conversely, the perceived necessity to contribute may have deterred poorer women. While funds were integral to group success and increased women's autonomy, they may not be the most effective way of supporting the poorest, as the risk pool is too small to allow for repayment default.

Behaviour change in perinatal care practices among rural women exposed to a women's group intervention in Nepal [ISRCTN31137309].

BACKGROUND: A randomised controlled trial of participatory women's groups in rural Nepal previously showed reductions in maternal and newborn mortality. In addition to the outcome data we also collected previously unreported information from the subgroup of women who had been pregnant prior to study commencement and conceived during the trial period. To determine the mechanisms via which the intervention worked we here examine the changes in perinatal care of these women. In particular we use the information to study factors affecting positive behaviour change in pregnancy, childbirth and newborn care. METHODS: Women's groups focusing on perinatal care were introduced into 12 of 24 study clusters(average cluster population 7000). A total of 5400 women of reproductive age enrolled in the trial had previously been pregnant and conceived during the trial period. For each of four outcomes (attendance at antenatal care; use of a boiled blade to cut the cord; appropriate dressing of the cord; not discarding colostrum) each of these women was classified as BETTER, GOOD, BAD or WORSE to describe whether and how she changed her pre-trial practice. Multilevel multinomial models were used to identify women most responsive to intervention. RESULTS: Among those not initially following good practice, women in intervention areas were significantly more likely to do so later for all four outcomes (OR 1.92 to 3.13). Within intervention clusters, women who attended groups were more likely to show a positive change than non-group members with regard to antenatal care utilisation and not discarding colostrum, but non-group members also benefited. CONCLUSION: Women's groups promoted significant behaviour change for perinatal care amongst women not previously following good practice. Positive changes attributable to intervention were not restricted to specific demographic subgroups.

Effect of a participatory intervention with women's groups on birth outcomes in Nepal: cluster-randomised controlled trial.

BACKGROUND: Neonatal deaths in developing countries make the largest contribution to global mortality in children younger than 5 years. 90% of deliveries in the poorest quintile of households happen at home. We postulated that a community-based participatory intervention could significantly reduce neonatal mortality rates. METHODS: We pair-matched 42 geopolitical clusters in Makwanpur district, Nepal, selected 12 pairs randomly, and randomly assigned one of each pair to intervention or control. In each intervention cluster (average population 7000), a female facilitator convened nine women's group meetings every month. The facilitator supported groups through an action-learning cycle in which they identified local perinatal problems and formulated strategies to address them. We monitored birth outcomes in a cohort of 28?931 women, of whom 8% joined the groups. The primary outcome was neonatal mortality rate. Other outcomes included stillbirths and maternal deaths, uptake of antenatal and delivery services, home care practices, infant morbidity, and health-care seeking. Analysis was by intention to treat. The study is registered as an International Standard Randomised Controlled Trial, number ISRCTN31137309. FINDINGS: From 2001 to 2003, the neonatal mortality rate was 26.2 per 1000 (76 deaths per 2899 livebirths) in intervention clusters compared with 36.9 per 1000 (119 deaths per 3226 livebirths) in controls (adjusted odds ratio 0.70 [95% CI 0.53-0.94]). Stillbirth rates were similar in both groups. The maternal mortality ratio was 69 per 100000 (two deaths per 2899 livebirths) in intervention clusters compared with 341 per 100000 (11 deaths per 3226 livebirths) in control clusters (0.22 [0.05-0.90]). Women in intervention clusters were more likely to have antenatal care, institutional delivery, trained birth attendance, and hygienic care than were controls. INTERPRETATION: Birth outcomes in a poor rural population improved greatly through a low cost, potentially sustainable and scalable, participatory intervention with women's groups.

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.