In India, an estimated 30,000 mothers die annually from preventable causes related to pregnancy and childbirth.1 Meanwhile, 800,000 children under the age of five die from vaccine preventable disease, neonatal infection, birth asphyxia and malnutrition. In 2017, the Indian Council of Medical Research (ICMR), Public Health Foundation of India (PHFI) and National Institute of Nutrition (NIN), reported malnutrition as the main risk factor for under-5 deaths nationally, accounting for 68% of total deaths. A major predictor of low birthweight and infant malnutrition is maternal anemia (and associated poor maternal nutrition), which occurs in greater than 50% of women between the ages of 15–49 years.2
Rajasthan, India’s largest state, is a high-focus state with respect to reproductive and child health (RCH). It has a population of 80 million citizens,3 75% of whom live in rural areas,4 and a maternal and infant mortality rate of 199 (India MMR: 130) and 41 (India IMR: 34) respectively.5,6 Annually, an estimated 420,000 pregnant women in Rajasthan are at high-risk of delivery complications from carrying three or more pregnancies.7
India’s public health system provides a large set of cost effective, successful solutions across the ante-, intra-, and post-natal care continuum that have been implemented to prevent unnecessary maternal, neonatal, and child mortality: iron folic acid supplementation for pregnant women, regular antenatal care checkups, institutional deliveries, training on newborn care, immunizations, and treatment of febrile illness.
However, since data for these interventions is collected on paper at the point of care, the public health system faces the following problems: missing and inconsistent data, poor coordination between health workers at different levels of care, lack of accountability, delays in reporting data for action, unregistered populations, and a disconnected continuum of care.
To address these gaps, Khushi Baby, a non-profit organization based in the Udaipur District of Rajasthan, developed and implemented a digital health intervention to track key reproductive and child health indicators over the last five years. This platform ensures data accountability, completeness, retention and sharing in an offline and timely manner. It has also significantly improved infant immunization rates and decreased infant malnutrition.8 Through years of field work in rural Udaipur, we have observed inadequate access to referral care for high-risk pregnant women and infants. In response, the Khushi Baby solution combines a technology platform with human effort in the form of field monitors who support community health workers providing high-risk follow-up. So far, 15 Khushi Baby field monitors have conducted more than 2000 home and hospital visits to encourage completion of referral care for maternal anemia and infant malnutrition. Their efforts have had a positive impact on the health of at least 300 high-risk mothers and infants. Despite these established and emerging interventions, poor access - to both routine and referral care services - remains a barrier for most pregnant women living at the rural last mile.
As described by Thaddeus and Maine, mothers face three key delays to referral care: delays in seeking care, delays in arriving at the healthcare facility, and delays in provision of adequate care.9 These delays are rooted in socio-economic, cultural, and environmental characteristics (patient factors) and quality of health care (health system factors). Health system factors are thought to carry more weight than patient factors because of their potential to affect all three phases of delay.
A 2019 narrative review of barriers of maternal and neonatal referral systems in developing countries by Harahap et al. noted challenges in both patient and health systems factors. Patient barriers included: environments, knowledge about the referral, poverty, maternal health status, and culture. Health system barriers included: transportation, communication, quality of care, referral documentation, standard procedures for referral and monitoring, and network infrastructure. The five studies from India (between 2014–2018) included in the review focused more on the health system and did not identify barriers related to network infrastructure, knowledge about referral, maternal health status, and culture.10
Barriers to maternal and child referral care have been under-researched in the Indian context, and most relevant for our study, no such studies have been conducted in Rajasthan. We hypothesize that beyond the globally identified barriers to maternal and child referral care, several specific barriers may emerge from a local application of the socio-ecological model. Our study is the first to use the socio-ecological model (SEM) to qualitatively assess the barriers and facilitators of antenatal referral care in India. Through qualitative interviews with high risk pregnant (HRP) women and infants living in rural communities across four blocks in Udaipur, we aim to 1) identify barriers and facilitators to referral care completion, 2) categorize them into individual, interpersonal, community and structural factors, 3) study the interactions and combined effects of individual/interpersonal factors and community/structural factors on referral care completion, and 5) discuss potential policy, human resource and technology solutions to improve referral care completion and improve maternal and infant health.