Illness recognition, decision-making, and care-seeking for maternal and newborn complications: a qualitative study in Sarlahi District, Nepal

BACKGROUND: Identification of maternal and newborn illness and the decision-making and subsequent care-seeking patterns are poorly understood in Nepal. We aimed to characterize the process and factors influencing recognition of complications, the decision-making process, and care-seeking behavior among families and communities who experienced a maternal complication, death, neonatal illness, or death in a rural setting of Nepal. METHODS: Thirty-two event narratives (six maternal/newborn deaths each and 10 maternal/newborn illnesses each) were collected using in-depth interviews and small group interviews. We purposively sampled across specific illness and complication definitions, using data collected prospectively from a cohort of women and newborns followed from pregnancy through the first 28 days postpartum. The event narratives were coded and analyzed for common themes corresponding to three main domains of illness recognition, decision-making, and care-seeking; detailed event timelines were created for each. RESULTS: While signs were typically recognized early, delays in perceiving the severity of illness compromised prompt care-seeking in both maternal and newborn cases. Further, care was often sought initially from informal health providers such as traditional birth attendants, traditional healers, and village doctors. Key decision-makers were usually female family members; husbands played limited roles in decisions related to care-seeking, with broader family involvement in decision-making for newborns. Barriers to seeking care at any type of health facility included transport problems, lack of money, night-time illness events, low perceived severity, and distance to facility. Facility care was often sought only after referral or following treatment failure from an informal provider and private facilities were sought for newborn care. Respondents characterized government facility-based care as low quality and reported staff rudeness and drug type and/or supply stock shortages. CONCLUSION: Delaying the decision to seek skilled care was common in both newborn and maternal cases. Among maternal cases, delays in receiving appropriate care when at a facility were also seen. Improved recognition of danger signs and increased demand for skilled care, motivated through community level interventions and health worker mobilization, needs to be encouraged. Engaging informal providers through training in improved danger sign identification and prompt referral, especially for newborn illnesses, is recommended. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s41043-017-0123-z) contains supplementary material, which is available to authorized users.