Barriers and enablers to reporting pregnancy and adverse pregnancy outcomes in population-based surveys: EN-INDEPTH study

The Every Newborn-Indepth Study Collaborative Group ,Doris Kwesiga,Peter Waiswa,Tryphena Nareeba,Gashaw A Biks,Grace Manu,Md Ali Imam,Adane Kebede Tesega,Joy E Lawn,Charlotte Tawiah,Alexandra Beedle,Hannah Blencowe,Nafisa Delwar,Ane B Fisker,Yeetey A K Enuameh

doi:10.1186/s12963-020-00228-x

Abstract

BackgroundRisks of neonatal death, stillbirth and miscarriage are highest in low- and middle-income countries (LMICs), where data has most gaps and estimates rely on household surveys, dependent on women reporting these events. Underreporting of pregnancy and adverse pregnancy outcomes (APOs) is common, but few studies have investigated barriers to reporting these in LMICs. The EN-INDEPTH multi-country study applied qualitative approaches to explore barriers and enablers to reporting pregnancy and APOs in surveys, including individual, community, cultural and interview level factors.MethodsThe study was conducted in five Health and Demographic Surveillance System sites in Guinea-Bissau, Ethiopia, Uganda, Bangladesh and Ghana. Using an interpretative paradigm and phenomenology methodology, 28 focus group discussions were conducted with 82 EN-INDEPTH survey interviewers and supervisors and 172 women between February and August 2018. Thematic analysis was guided by an a priori codebook.ResultsSurvey interview processes influenced reporting of pregnancy and APOs. Women found questions about APOs intrusive and of unclear relevance. Across all sites, sociocultural and spiritual beliefs were major barriers to women reporting pregnancy, due to fear that harm would come to their baby. We identified several factors affecting reporting of APOs including reluctance to speak about sad memories and variation in recognition of the baby’s value, especially for APOs at earlier gestation. Overlaps in local understanding and terminology for APOs may also contribute to misreporting, for example between miscarriages and stillbirths. Interviewers’ skills and training were the keys to enabling respondents to open up, as was privacy during interviews.ConclusionSociocultural beliefs and psycho-social impacts of APOs play a large part in underreporting these events. Interviewers’ skills, careful tool development and translation are the keys to obtaining accurate information. Reporting could be improved with clearer explanations of survey purpose and benefits to respondents and enhanced interviewer training on probing, building rapport and empathy.

Highlights

Risks of neonatal death, stillbirth and miscarriage are highest in low- and middle-income countries (LMICs), where data has most gaps and estimates rely on household surveys, dependent on women reporting these events
Differences in reporting adverse pregnancy outcomes (APOs) o Variation in severity of reporting barriers by APO: The results suggest that there is a “dose response,” with higher barriers to reporting APOs at earlier gestations and those with more attached stigma, notably miscarriage, stillbirth, with neonatal deaths more likely to be reported but still less likely than older child deaths
Adverse pregnancy outcomes (APOs), including miscarriages, stillbirths and neonatal deaths, are a major burden associated with long-term psychological and social effects [1]

Summary

Introduction

Stillbirth and miscarriage are highest in low- and middle-income countries (LMICs), where data has most gaps and estimates rely on household surveys, dependent on women reporting these events. Around 11–22% of known pregnancies end in miscarriage, most of these in the first trimester [4] These APOs are often underreported and can negatively affect maternal health as well as that of fathers and families, leading to grief, depression and social withdrawal [5,6,7,8]. The risk of these APOs is highest in sub-Saharan Africa (SSA) and South Asia, yet these highest burden countries have the most gaps in their civil registration and vital statistics (CRVS) and data systems—the inverse data law [9]. The ENAP aims to end preventable newborn deaths and stillbirths, and by 2030 to reduce neonatal deaths to 12 or fewer per 1000 live births and stillbirths to 12 or fewer per 1000 total births in every country [10]

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