How community and healthcare provider perceptions, practices and experiences influence reporting, disclosure and data collection on stillbirth: Findings of a qualitative study in Afghanistan

Christou, Aliki; Alam, Ashraful; Hofiani, Sayed Murtaza Sadat; Rasooly, Mohammad Hafiz; Mubasher, Adela; Rashidi, Mohammad Khakerah; Dibley, Michael J.; Raynes‐Greenow, Camille

doi:10.1016/j.socscimed.2019.112413

Cited by 21 publications

(26 citation statements)

References 37 publications

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“…In Matlab, we found that the performance of religious rituals was almost the same for neonatal and adult deaths, with only slight differences for stillbirths. Similarly in an Afghanistan study, funerals were held and sometimes people prayed when babies were stillborn, despite this being frowned upon [17]. This was different from other sites in our study and literature from South Africa [25] and Ethiopia [22,24], where burial and mourning practices were different or discouraged for APOs, especially miscarriages and stillbirths.…”

Section: Discussion Of Findingscontrasting

confidence: 77%

“…They also identified terminological and methodological challenges to reporting. Similar findings were reported in a study in Afghanistan which used in-depth interviews [17]. However, these studies focused on single countries and did not include interviewers' perspectives.…”

Section: Introductionsupporting

confidence: 82%

“…In rural Vietnam, fear of stigma was a barrier to the quality and accuracy of reporting deaths [31]. However, in Afghanistan, it was reported that stillbirths were openly discussed in communities and rarely stigmatised unless they had congenital abnormalities; rather, it was said that talking about a stillbirth could prevent it happening again [17]. Challenges with stigma have been cited as influencing reporting in other studies beyond pregnancy and APOs.…”

Section: Discussion Of Findingsmentioning

confidence: 99%

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

Kwesiga

Tawiah

Imam

et al. 2021

Popul Health Metrics

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Background 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. 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. Methods The 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. Results Survey 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. Conclusion Sociocultural 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.

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Section: Discussion Of Findingscontrasting

confidence: 77%

Section: Introductionsupporting

confidence: 82%

Section: Discussion Of Findingsmentioning

confidence: 99%

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

Kwesiga

Tawiah

Imam

et al. 2021

Popul Health Metrics

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“…Whilst FPH also captures information on stillbirths, the FBH has been supplemented with a reproductive calendar or additional questions on non-live births to capture such data in surveys since DHS-II. In practice, stillbirths, miscarriages and terminations of pregnancy are not fully captured, especially in FBH plus reproductive calendar or additional questions in the current DHS-VII [43]. Based on recent qualitative research, we hypothesise that this may be because the women do not report the event or timing, or do not perceive stillbirths as "valued", or avoid reporting due to stigma in the community associating adverse outcomes with evil spirits [44].…”

Section: Discussionmentioning

confidence: 99%

Four decades of measuring stillbirths and neonatal deaths in Demographic and Health Surveys: historical review

Akuze

Lawn

Waiswa

et al. 2021

Popul Health Metrics

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Background Worldwide, an estimated 5.1 million stillbirths and neonatal deaths occur annually, 98% in low- and middle-income countries. Limited coverage of civil and vital registration systems necessitates reliance on women’s retrospective reporting in household surveys for data on these deaths. The predominant platform, Demographic and Health Surveys (DHS), has evolved over the last 35 years and differs by country, yet no previous study has described these differences and the effects of these changes on stillbirth and neonatal death measurement. Methods We undertook a review of DHS model questionnaires, protocols and methodological reports from DHS-I to DHS-VII, focusing on the collection of information on stillbirth and neonatal deaths describing differences in approaches, questionnaires and geographic reach up to December 9, 2019. We analysed the resultant data, applied previously used data quality criteria including ratios of stillbirth rate (SBR) to neonatal mortality rate (NMR) and early NMR (ENMR) to NMR, comparing by country, over time and by DHS module. Results DHS has conducted >320 surveys in 90 countries since 1984. Two types of maternity history have been used: full birth history (FBH) and full pregnancy history (FPH). A FBH collecting information only on live births has been included in all model questionnaires to date, with data on stillbirths collected through a reproductive calendar (DHS II-VI) or using additional questions on non-live births (DHS-VII). FPH collecting information on all pregnancies including live births, miscarriages, abortions and stillbirths has been used in 17 countries. We found no evidence of variation in stillbirth data quality assessed by SBR:NMR over time for FBH surveys with reproductive calendar, some variation for surveys with FBH in DHS-VII and most variation among the surveys conducted with a FPH. ENMR:NMR ratio increased over time, which may reflect changes in data quality or real epidemiological change. Conclusion DHS remains the major data source for pregnancy outcomes worldwide. Although the DHS model questionnaire has evolved over the last three and half decades, more robust evidence is required concerning optimal methods to obtain accurate data on stillbirths and neonatal deaths through household surveys and also to develop and test standardised data quality criteria.

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“…A separate guide was used for the FGDs with the LHWs. The guides were developed after literature review, and previous similar research experience [13]. The final versions of the IDI and FGD guides were approved after revision of several draft versions of the guides, and input by co-authors.…”

Section: Data Collectionmentioning

confidence: 99%

Exploring women’s experience of healthcare use during pregnancy and childbirth to understand factors contributing to perinatal deaths in Pakistan: A qualitative study

Ahmed

Alam

Khokhar³

et al. 2020

PLoS ONE

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Understanding key healthcare system challenges experienced by women during pregnancy and birth is crucial to scale up available interventions and reduce perinatal mortality. A community perspective about preferences and experience of care during this period can be used to improve community-based programs to reduce perinatal mortality. Using a qualitative exploratory approach, we examined women's experience of perinatal loss, aiming to understand the main factors, as perceived and experienced by women, leading to perinatal loss. Qualitative in-depth Interviews were conducted with 25 mothers with a recent perinatal loss, three family members, six healthcare officials, and two focus group discussions with 17 lady health workers. Data were analysed using inductive and deductive coding, by thematic analysis. Our findings revealed three distinct but interrelated themes, which include: 1) poor access to care during pregnancy and birth, 2) unavailability of appropriate healthcare services, and 3) poor quality of care during pregnancy and birth. Women frequently delayed seeking formal care around birth because of delays by themselves, their family members, or the local traditional birth attendants who frequently induced births at women's homes without recognising the dangers to the mothers or their babies. Preference for private care was common, however they often could not bear the cost of care when they needed caesarean section or in-patient care for their sick newborns because these services were absent in public health facilities of the district. Referral to the regional tertiary care hospital was often not officially arranged leading to risky births in small and crowded private clinics. Women's views about negative staff attitudes and the lack of attention given to them in public health facilities highlighted a lack of quality and respectful antenatal care. Improvement in women's access to essential care during pregnancy and around birth, availability of emergency obstetric and newborn care, improving the quality of maternal and newborn care in both public and private health facilities at the district level might reduce perinatal mortality in Pakistan.

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How community and healthcare provider perceptions, practices and experiences influence reporting, disclosure and data collection on stillbirth: Findings of a qualitative study in Afghanistan

Cited by 21 publications

References 37 publications

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

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

Four decades of measuring stillbirths and neonatal deaths in Demographic and Health Surveys: historical review

Exploring women’s experience of healthcare use during pregnancy and childbirth to understand factors contributing to perinatal deaths in Pakistan: A qualitative study

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