Joy E Lawn1, Hannah Blencowe1, Doris Kwesiga2,3,4, Charlotte Tawiah5, Md Ali Imam6, Adane Kebede Tesega7,8, Tryphena Nareeba9, Yeetey A K Enuameh5,10, Gashaw A Biks7,8, Grace Manu5, Alexandra Beedle1, Nafisa Delwar6, Ane B Fisker11,12,13, Peter Waiswa14,15,16. 1. Maternal, Adolescent, Reproductive & Child Health (MARCH) Centre, London School of Hygiene & Tropical Medicine, London, UK. 2. Department of Health Policy, Planning and Management, Makerere University School of Public Health, Kampala, Uganda. dknnkwesiga@gmail.com. 3. Centre of Excellence for Maternal Newborn and Child Health Research, Makerere University, Kampala, Uganda. dknnkwesiga@gmail.com. 4. Department of Women and Children's Health, Uppsala University, Uppsala, Sweden. dknnkwesiga@gmail.com. 5. Kintampo Health Research Centre, Kintampo, Ghana. 6. Health Systems and Population Studies Division, International Centre for Diarrhoeal Disease Research, Dhaka, Bangladesh. 7. Dabat Research Centre Health and Demographic Surveillance System, Dabat, Ethiopia. 8. Department of Health Systems and Policy, University of Gondar Institute of Public Health, Gondar, Ethiopia. 9. IgangaMayuge Health and Demographic Surveillance System, Makerere University Centre for Health and Population Research, Makerere, Uganda. 10. Department of Epidemiology and Biostatistics, Kwame Nkrumah University of Science and Technology, Kumasi, Ghana. 11. Bandim Health Project, Bissau, Guinea-Bissau. 12. Research Centre for Vitamins and Vaccines, Statens Serum Institut, Copenhagen, Denmark. 13. Open Patient data Explorative Network (OPEN), Uni. of Southern Denmark, Odense, Denmark. 14. Department of Health Policy, Planning and Management, Makerere University School of Public Health, Kampala, Uganda. 15. Centre of Excellence for Maternal Newborn and Child Health Research, Makerere University, Kampala, Uganda. 16. Department of Public Health Sciences, Karolinska Institutet, Stockholm, Sweden.
Abstract
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.
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.