Social autopsy: INDEPTH Network experiences of utility, process, practices, and challenges in investigating causes and contributors to mortality

Abstract

BackgroundEffective implementation of child survival interventions depends on improved understanding of cultural, social, and health system factors affecting utilization of health care. Never the less, no standardized instrument exists for collecting and interpreting information on how to avert death and improve the implementation of child survival interventions.ObjectiveTo describe the methodology, development, and first results of a standard social autopsy tool for the collection of information to understand common barriers to health care, risky behaviors, and missed opportunities for health intervention in deceased children under 5 years old.MethodsUnder the INDEPTH Network, a social autopsy working group was formed to reach consensus around a standard social autopsy tool for neonatal and child death. The details around 434 child deaths in Iganga/Mayuge Health and Demographic Surveillance Site (HDSS) in Uganda and 40 child deaths in Dodowa HDSS in Ghana were investigated over 12 to 18 months. Interviews with the caretakers of these children elicited information on what happened before death, including signs and symptoms, contact with health services, details on treatments, and details of doctors. These social autopsies were used to assess the contributions of delays in care seeking and case management to the childhood deaths.ResultsAt least one severe symptom had been recognized prior to death in 96% of the children in Iganga/Mayuge HDSS and in 70% in Dodowa HDSS, yet 32% and 80% of children were first treated at home, respectively. Twenty percent of children in Iganga/Mayuge HDSS and 13% of children in Dodowa HDSS were never taken for care outside the home. In both countries most went to private providers. In Iganga/Mayuge HDSS the main delays were caused by inadequate case management by the health provider, while in Dodowa HDSS the main delays were in the home.ConclusionWhile delay at home was a main obstacle to prompt and appropriate treatment in Dodowa HDSS, there were severe challenges to prompt and adequate case management in the health system in both study sites in Ghana and Uganda. Meanwhile, caretaker awareness of danger signs needs to improve in both countries to promote early care seeking and to reduce the number of children needing referral. Social autopsy methods can improve this understanding, which can assist health planners to prioritize scarce resources appropriately.

Using social autopsy to understand maternal, newborn, and child mortality in low-resource settings: a systematic review of the literature

“…and June 2006.Caregivers (N = 26) interviewed about 26 child deathsUnder 5 years, neonates, and infants4–6 weeks

All but 3 children had been taken to an allopathic healthcare provider during the illness, while the other 3 had been taken to a traditional care provider.

3 mothers reported having to find the father before any decision could be made. (21/26) were taken to more than one healthcare provider.

Barriers to care related to 1) Illness interpretation, 2) seeking care, 3) receiving adequate treatment.INDEPTH Network Verbal tool; Aguilar et al’s Social Autopsy Tool from BoliviaNot clear0.67Jat TR, Deo PR, Goicolea I, Hurtig A, San Sabastian M. [9]2015IndiaCross-sectionalUsing ‘government records and community informants’ purposively selected maternal deaths to cover range of circumstances July 2011-Nov. 2011.31 caregivers interviewed about 22 maternal deaths.Mothers2 weeks – 1 year21/22 women were delayed in reaching care.13/22 women accessed more than 2 health facilities.13/22 women were delayed at health facility from initiation of care.12 died at facility; 9 died en routeWHO Verbal Autopsy Tool; CHERG Social Autopsy ToolThree Delays Model0.80Källander K, Hildenwall H, Waiswa P, Galiwango E, Peterson S, Pariyo G. [10]2008UgandaCross-sectionalIganga/Mayuga Demographic Surveillance Site used to identify under 5 childhood deaths occurring between Nov. 2005 and Aug. 2007Caregivers (N not reported) surveyed about 164 children.Under 5 years old4–6 weeksStudy collected info on many diseases, but emphasizes results for pneumoniaOverall, a child that died of pneumonia had been sick for 7 daysMedian reported duration was 4 hours from illness recognition to home care initiation, 2 days until care sought outside the home60% were within one hour walking distance of the facility visited.14% never taken outside of the home.Delayed care seeking was only associated with home treatment with antibiotics.INDEPTH Network Verbal tool; Kalter et al’s Social Autopsy Tool from BoliviaNot clear0.71Källander K, Kadobera D, Williams TN, Nielsen RT, Yevoo L, Mutebi A, Akpakli J, Narh C, Gyapong M, Amu A, Waiswa P. [11]2011Uganda/GhanaCross-sectionalIganga/...…”

“…Of the 8 manuscripts in which danger signs were recognized, only 3 reported respondents seeking prompt care. For example, in Uganda [11], 96% of respondents recognized severe symptoms in their children under the age of 5 before death, but a third were treated at home before going to a facility. Similarly, in Niger [12], while 95.8% of pregnant women’s caregivers reported a serious or severe symptom prior to death, 60.3% of women received no care for their illness.…”

“…Another strength of this study is that we examined not only the tools being used, but also the analytic frameworks employed. It is clear from our findings that researchers are typically choosing to use either the Pathway to Survival model or the Three Delays Model to guide their analysis, with only one published paper using both [11]. However, it is worth nothing that those articles using the Three Delays Model did not operationalize the variables in the same way, making comparison across studies difficult.…”

Infant illness spanning the antenatal to early neonatal continuum in rural northern Ghana: local perceptions, beliefs and practices

“…However verbal autopsy tools do not provide information on the critical delays and care-seeking behaviors that could have saved the child. 32 As the contributing factors leading to death are complex, an understanding of the beliefs systems, the recognition and interpretation of adverse health events, the timing and type of care-seeking actions, and treatments received prior to death are essential. This process has been coined 'social autopsy.'…”

Emergency obstetric care in Mali: catastrophic spending and its impoverishing effects on households

“…Each maternal death was matched to a near miss with the same complication that had occurred in the same district and on approximately the same date (median difference of 7 days). We applied a social autopsy interview method 18,19 and conducted social autopsies on the sample of 484 women a median of 5.5 months after the obstetric emergency. During interviews we collected obstetric data and information on women's sociodemographic characteristics and the expenses incurred by their households as a result of the emergency obstetric care, including the costs of transportation and treatment and other related costs, such as the cost of food for the woman and accompanying family members.…”