| 1. |
- Baschieri, Angela, et al.
(författare)
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"Every Newborn-INDEPTH" (EN-INDEPTH) study protocol for a randomised comparison of household survey modules for measuring stillbirths and neonatal deaths in five Health and Demographic Surveillance sites
- 2019
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Ingår i: Journal of Global Health. - : International Global Health Society. - 2047-2978 .- 2047-2986. ; 9:1, s. 1-15
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Tidskriftsartikel (refereegranskat)abstract
- Background: Under-five and maternal mortality were halved in the Millennium Development Goals (MDG) era, with slower reductions for 2.6 million neonatal deaths and 2.6 million stillbirths. The Every Newborn Action Plan aims to accelerate progress towards national targets, and includes an ambitious Measurement Improvement Roadmap. Population-based household surveys, notably Demographic and Health Surveys (DHS) and Multiple Indicator Cluster Surveys, are major sources of population-level data on child mortality in countries with weaker civil registration and vital statistics systems, where over two-thirds of global child deaths occur. To estimate neonatal/child mortality and pregnancy outcomes (stillbirths, miscarriages, birthweight, gestational age) the most common direct methods are: (1) the standard DHS-7 with Full Birth History with additional questions on pregnancy losses in the past 5 years (FBH+) or (2) a Full Pregnancy History (FPH). No direct comparison of these two methods has been undertaken, although descriptive analyses suggest that the FBH+ may underestimate mortality rates particularly for stillbirths.Methods: This is the protocol paper for the Every Newborn-INDEPTH study (INDEPTH Network, International Network for the Demographic Evaluation of Populations and their Health Every Newborn, Every Newborn Action Plan), aiming to undertake a randomised comparison of FBH+ and FPH to measure pregnancy outcomes in a household survey in five selected INDEPTH Network sites in Africa and South Asia (Bandim in urban and rural Guinea-Bissau; Dabat in Ethiopia; IgangaMayuge in Uganda; Kintampo in Ghana; Matlab in Bangladesh). The survey will reach >68 000 pregnancies to assess if there is ≥15% difference in stillbirth rates. Additional questions will capture birthweight, gestational age, birth/death certification, termination of pregnancy and fertility intentions. The World Bank's Survey Solutions platform will be tailored for data collection, including recording paradata to evaluate timing. A mixed methods assessment of barriers and enablers to reporting of pregnancy and adverse pregnancy outcomes will be undertaken.Conclusions: This large-scale study is the first randomised comparison of these two methods to capture pregnancy outcomes. Results are expected to inform the evidence base for survey methodology, especially in DHS, regarding capture of stillbirths and other outcomes, notably neonatal deaths, abortions (spontaneous and induced), birthweight and gestational age. In addition, this study will inform strategies to improve health and demographic surveillance capture of neonatal/child mortality and pregnancy outcomes.
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| 2. |
- Biks, Gashaw Andargie, et al.
(författare)
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Birthweight data completeness and quality in population-based surveys : EN-INDEPTH study
- 2021
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Ingår i: Population Health Metrics. - : BioMed Central (BMC). - 1478-7954. ; 19
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Tidskriftsartikel (refereegranskat)abstract
- Background: Low birthweight (< 2500g) is an important marker of maternal health and is associated with neonatal mortality, long-term development and chronic diseases. Household surveys remain an important source of population-based birthweight information, notably Demographic and Health Surveys (DHS) and UNICEF's Multiple Indicator Cluster Surveys (MICS); however, data quality concerns remain. Few studies have addressed how to close these gaps in surveys.Methods: The EN-INDEPTH population-based survey of 69,176 women was undertaken in five Health and Demographic Surveillance System sites (Matlab-Bangladesh, Dabat-Ethiopia, Kintampo-Ghana, Bandim-Guinea-Bissau, IgangaMayuge-Uganda). Responses to existing DHS/MICS birthweight questions on 14,411 livebirths were analysed and estimated adjusted odds ratios (aORs) associated with reporting weighing, birthweight and heaping reported. Twenty-eight focus group discussions with women and interviewers explored barriers and enablers to reporting birthweight.Results: Almost all women provided responses to birthweight survey questions, taking on average 0.2min to answer. Of all babies, 62.4% were weighed at birth, 53.8% reported birthweight and 21.1% provided health cards with recorded birthweight. High levels of heterogeneity were observed between sites. Home births and neonatal deaths were less likely to be weighed at birth (home births aOR 0.03(95%CI 0.02-0.03), neonatal deaths (aOR 0.19(95%CI 0.16-0.24)), and when weighed, actual birthweight was less likely to be known (aOR 0.44(95%CI 0.33-0.58), aOR 0.30(95%CI 0.22-0.41)) compared to facility births and post-neonatal survivors. Increased levels of maternal education were associated with increases in reporting weighing and knowing birthweight. Half of recorded birthweights were heaped on multiples of 500g. Heaping was more common in IgangaMayuge (aOR 14.91(95%CI 11.37-19.55) and Dabat (aOR 14.25(95%CI 10.13-20.3) compared to Bandim. Recalled birthweights were more heaped than those recorded by card (aOR 2.59(95%CI 2.11-3.19)). A gap analysis showed large missed opportunity between facility birth and known birthweight, especially for neonatal deaths. Qualitative data suggested that knowing their baby's weight was perceived as valuable by women in all sites, but lack of measurement and poor communication, alongside social perceptions and spiritual beliefs surrounding birthweight, impacted women's ability to report birthweight.Conclusions: Substantial data gaps remain for birthweight data in household surveys, even amongst facility births. Improving the accuracy and recording of birthweights, and better communication with women, for example using health cards, could improve survey birthweight data availability and quality.
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| 3. |
- Blencowe, Hannah, et al.
(författare)
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Stillbirth outcome capture and classification in population-based surveys : EN-INDEPTH study
- 2021
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Ingår i: Population Health Metrics. - : BioMed Central (BMC). - 1478-7954. ; 19
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Tidskriftsartikel (refereegranskat)abstract
- Background: Household surveys remain important sources of stillbirth data, but omission and misclassification are common. Classifying adverse pregnancy outcomes as stillbirths requires accurate reporting of vital status at birth and gestational age or birthweight for every pregnancy. Further categorisation, e.g. by sex, or timing (intrapartum/antepartum) improves data to understand and prevent stillbirth.Methods: We undertook a cross-sectional population-based survey of women of reproductive age in five health and demographic surveillance system sites in Bangladesh, Ethiopia, Ghana, Guinea-Bissau and Uganda (2017-2018). All women answered a full birth history with pregnancy loss questions (FBH+) or a full pregnancy history (FPH). A sub-sample across both groups were asked additional stillbirth questions. Questions were evaluated using descriptive measures. Using an interpretative paradigm and phenomenology methodology, focus group discussions with women exploring barriers to reporting birthweight for stillbirths were conducted. Thematic analysis was guided by an a priori codebook.Results: Overall 69,176 women reported 98,483 livebirths (FBH+) and 102,873 pregnancies (FPH). Additional questions were asked for 1453 stillbirths, 1528 neonatal deaths and 12,620 surviving children born in the 5years prior to the survey. Completeness was high (> 99%) for existing FBH+/FPH questions on signs of life at birth and gestational age (months). Discordant responses in signs of life at birth between different questions were common; nearly one-quarter classified as stillbirths on FBH+/FPH were reported born alive on additional questions. Availability of information on gestational age (weeks) (58.1%) and birthweight (13.2%) was low amongst stillbirths, and heaping was common. Most women (93.9%) were able to report the sex of their stillborn baby. Response completeness for stillbirth timing (18.3-95.1%) and estimated proportion intrapartum (15.6-90.0%) varied by question and site. Congenital malformations were reported in 3.1% stillbirths. Perceived value in weighing a stillborn baby varied and barriers to weighing at birth a nd knowing birthweight were common.Conclusions: Improving stillbirth data in surveys will require investment in improving the measurement of vital status, gestational age and birthweight by healthcare providers, communication of these with women, and overcoming reporting barriers. Given the large burden and effect on families, improved data must be made available to end preventable stillbirths.
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| 4. |
- Enuameh, Yeetey Akpe Kwesi, et al.
(författare)
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Termination of pregnancy data completeness and feasibility in population-based surveys : EN-INDEPTH study
- 2021
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Ingår i: Population Health Metrics. - : BioMed Central (BMC). - 1478-7954. ; 19
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Tidskriftsartikel (refereegranskat)abstract
- Background: Termination of pregnancy (TOP) is a common cause of maternal morbidity and mortality in low- and middle-income countries. Population-based surveys are the major data source for TOP data in LMICs but are known to have shortcomings that require improving. The EN-INDEPTH multi-country survey employed a full pregnancy history approach with roster and new questions on TOP and Menstrual Restoration. This mixed methods paper assesses the completeness of responses to questions eliciting TOP information from respondents and reports on practices, barriers, and facilitators to TOP reporting.Methods: The EN-INDEPTH study was a population-based cross-sectional study. The Full Pregnancy History arm of the study surveyed 34,371 women of reproductive age between 2017 and 2018 in five Health and Demographic Surveillance System (HDSS) sites of the INDEPTH network: Bandim, Guinea-Bissau; Dabat, Ethiopia; IgangaMayuge, Uganda; Kintampo, Ghana; and Matlab, Bangladesh. Completeness and time spent in answering TOP questions were evaluated using simple tabulations and summary statistics. Exact binomial 95% confidence intervals were computed for TOP rates and ratios. Twenty-eight (28) focus group discussions were undertaken and analysed thematically.Results: Completeness of responses regarding TOP was between 90.3 and 100.0% for all question types. The new questions elicited between 2.0% (1.0-3.4), 15.5% (13.9-17.3), and 11.5% (8.8-14.7) lifetime TOP cases over the roster questions from Dabat, Ethiopia; Matlab, Bangladesh; and Kintampo, Ghana, respectively. The median response time on the roster TOP questions was below 1.3 minutes in all sites. Qualitative results revealed that TOP was frequently stigmatised and perceived as immoral, inhumane, and shameful. Hence, it was kept secret rendering it difficult and uncomfortable to report. Miscarriages were perceived to be natural, being easier to report than TOP. Interviewer techniques, which were perceived to facilitate TOP disclosure, included cultural competence, knowledge of contextually appropriate terms for TOP, adaptation to interviewee's individual circumstances, being non-judgmental, speaking a common language, and providing detailed informed consent.Conclusions: Survey roster questions may under-represent true TOP rates, since the new questions elicited responses from women who had not disclosed TOP in the roster questions. Further research is recommended particularly into standardised training and approaches to improving interview context and techniques to facilitate TOP reporting in surveys.
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| 5. |
- Kambugyiro, Doris Kwesiga, 1981-
(författare)
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Exploring the Under Reporting of Pregnancy and Adverse Pregnancy Outcomes in Population and Health Surveys : A Multi-Country Qualitative Study
- 2023
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: Globally in 2021, an estimated 2.3 million newborn deaths and 1.9 million stillbirths occurred, with highest mortality in sub-Saharan Africa and southern Asia. True mortality is likely higher due to under reporting of pregnancies and Adverse Pregnancy Outcomes (APOs). Accurate data are critical for monitoring and preventing these events but many countries rely on Demographic and Health Surveys (DHS), despite measurement challenges. Few studies have explored reasons for under reporting pregnancy and APOs in low income countries, within surveys and surveillance settings.Objective: To explore enablers and barriers to reporting pregnancy and APOs during population and health surveys in multi-country contexts, informing measurement improvements.Methods: The study was conducted in Uganda, Guinea-Bissau, Ghana, Ethiopia and Bangladesh between 2018 and 2021. Focus group discussions (Study I and II), narratives (Study III) and cognitive interviews (Study IV) were undertaken. Thematic analysis was done for the first three studies and qualitative description for Study IV.Results: Methodological challenges included question framing, where double barrelled questions resulted in wrong answers. There were incorrect definitions for miscarriages and stillbirths. Enablers were mostly around interviewers’ skills like building rapport, probing and empathy. Community barriers comprised socio-cultural factors that encouraged silence, including fear of witchcraft. Stigma towards APOs was common, with some foetal deaths viewed as not human, thus less reported. Informal reporting of APOs within social networks sometimes resulted in social support. Individually, APOs left women and men with negative psychosocial effects like depression, thus their reluctance to report. Nevertheless, some respondents said interviews left them feeling better, especially if the interviewer comforted them. Respondents accepted interviews hoping to receive health education about pregnancy loss.Conclusions: Many adverse pregnancy outcomes are avoidable, but they must be accurately measured before designing appropriate interventions. Surveys like the DHS are globally trusted but this study demonstrates that they have weaknesses and sometimes inaccurate data. Improving measurement requires precise questions, strengthened interviewer training, embedded counseling and health education. Supportive policies encouraging reporting are critical, alongside sensitizing citizens on its importance. Otherwise, APOs shall remain invisible and a continued burden to the mental health of those who experience them.
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| 6. |
- Kwesiga, Doris, et al.
(författare)
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Adverse pregnancy outcome disclosure and women's social networks : a qualitative multi-country study with implications for improved reporting in surveys
- 2022
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Ingår i: BMC Pregnancy and Childbirth. - : BioMed Central (BMC). - 1471-2393 .- 1471-2393. ; 22:1
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundGlobally, approximately 6,700 newborn deaths and 5,400 stillbirths occur daily. The true figure is likely higher, with under reporting of adverse pregnancy outcomes (APOs) noted. Decision-making in health is influenced by various factors, including one's social networks. We sought to understand APOs disclosure within social networks in Uganda, Ghana, Guinea-Bissau and Bangladesh and how this could improve formal reporting of APOs in surveys.MethodsA qualitative, exploratory multi-country study was conducted within four health and demographic surveillance system sites. 16 focus group discussions were held with 147 women aged 15-49 years, who had participated in a recent household survey. Thematic analysis, with both deductive and inductive elements, using three pre-defined themes of Sender, Message and Receiver was done using NVivo software.ResultsDisclosure of APOs was a community concern, with news often shared with people around the bereaved for different reasons, including making sense of what happened and decision-making roles of receivers. Social networks responded with comfort, providing emotional, in-kind and financial support. Key decision makers included men, spiritual and traditional leaders. Non-disclosure was usually to avoid rumors in cases of induced abortions, or after a previous bad experience with health workers, who were frequently excluded from disclosure, except for instances where a woman sought advice on APOs.ConclusionsCommunities must understand why they should report APOs and to whom. Efforts to improve APOs reporting could be guided by diffusion of innovation theory, for instance for community entry and sensitization before the survey, since it highlights how information can be disseminated through community role models. In this case, these gatekeepers we identified could promote reporting of APOs. The stage at which a person is in decision-making, what kind of adopter they are and their take on the benefits and other attributes of reporting are important. In moving beyond survey reporting to getting better routine data, the theory would be applicable too. Health workers should demonstrate a more comforting and supportive response to APOs as the social networks do, which could encourage more bereaved women to inform them and seek care.
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| 7. |
- Kwesiga, Doris, et al.
(författare)
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Barriers and enablers to reporting pregnancy and adverse pregnancy outcomes in population-based surveys : EN-INDEPTH study
- 2021
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Ingår i: Population Health Metrics. - : BioMed Central (BMC). - 1478-7954. ; 19
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Tidskriftsartikel (refereegranskat)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.
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| 8. |
- Kwesiga, Doris, et al.
(författare)
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Exploring women’s interpretations of survey questions on pregnancy and pregnancy outcomes: Cognitive interviews in Iganga Mayuge, Uganda
- 2024
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Ingår i: Reproductive Health. - : BioMed Central (BMC). - 1742-4755. ; 21
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Tidskriftsartikel (refereegranskat)abstract
- Background: In 2021, Uganda’s neonatal mortality rate was approximately 19 deaths per 1000 live births, with an estimated stillbirth rate of 15.1 per 1000 total births. Data are critical for indicating areas where deaths occur and why, hence driving improvements. Many countries rely on surveys like Demographic and Health Surveys (DHS), which face challenges with respondents’ misinterpretation of questions. However, little is documented about this in Uganda. Cognitive interviews aim to improve questionnaires and assess participants’ comprehension of items. Through cognitive interviews we explored women’s interpretations of questions on pregnancy and pregnancy outcomes.Methods: In November 2021, we conducted cognitive interviews with 20 women in Iganga Mayuge health and demographic surveillance system site in eastern Uganda. We adapted the reproductive section of the DHS VIII women’s questionnaire, purposively selected questions and used concurrent verbal probing. Participants had secondary school education and were English speaking. Cognition was measured through comparing instructions in the DHS interviewers’ manual to participants’ responses and researcher’s knowledge. A qualitative descriptive approach to analysis was undertaken.Results: We report findings under the cognitive aspect of comprehension. Some questions were correctly understood, especially those with less technical terms or without multiple sections. Most participants struggled with questions asking whether the woman has her living biological children residing with her or not. Indeed, some thought it referred to how many living children they had. There were comprehension difficulties with long questions like 210 that asks about miscarriages, newborn deaths, and stillbirths together. Participants had varying meanings for miscarriages, while many misinterpreted stillbirth, not linking it to gestational age. Furthermore, even amongst educated women some survey questions were misunderstood.Conclusions: Population surveys may misclassify, over or under report events around pregnancy and pregnancy outcomes. Interviewers should begin with a standard definition of key terms and ensure respondents understand these. Questions can be simplified through breaking up long sentences, while interviewer training should be modified to ensure they thoroughly understand key terms. We recommend cognitive interviews while developing survey tools, beyond basic pre-testing. Improving respondents’ comprehension and thus response accuracy will increase reporting and data quality.
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| 9. |
- Kwesiga, Doris, et al.
(författare)
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Improving Post-discharge Practice of Kangaroo Mother Care : Perspectives From Communities in East-Central Uganda
- 2022
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Ingår i: Frontiers in Pediatrics. - : Frontiers Media S.A.. - 2296-2360. ; 10
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Tidskriftsartikel (refereegranskat)abstract
- IntroductionKangaroo mother care (KMC) is among the most cost-effective and easily accessible solutions for improving the survival and wellbeing of small newborns. In this study, we examined the barriers and facilitators to continuity of KMC at home following hospital discharge in rural Uganda. MethodsWe conducted this study in five districts in east-central Uganda, within six hospitals and at the community level. We used a qualitative approach, with two phases of data collection. Phase 1 comprised in-depth interviews with mothers who practiced KMC with their babies and caretakers who supported them and key informant interviews with health workers, district health office staff, community health workers, and traditional birth attendants. We then conducted group discussions with mothers of small newborns and their caretakers. We held 65 interviews and five group discussions with 133 respondents in total and used a thematic approach to data analysis. ResultsIn hospital, mothers were sensitized and taught KMC. They were expected to continue practicing it at home with regular returns to the hospital post-discharge. However, mothers practiced KMC for a shorter time at home than in the hospital. Reasons included being overburdened with competing domestic chores that did not allow time for KMC and a lack of community follow-up support by health workers. There were increased psycho-social challenges for mothers, alongside some dangerous practices like placing plastic cans of hot water near the baby to provide warmth. Respondents suggested various ways to improve the KMC experience at home, including the development of a peer-to-peer intervention led by mothers who had successfully done KMC and community follow-up of mothers by qualified health workers and community health workers. ConclusionDespite wide acceptance of KMC by health workers, challenges to effective implementation persist. Amid the global and national push to scale up KMC, potential difficulties to its adherence post-discharge in a rural, resource-limited setting remain. This study provides insights on KMC implementation and sustainability from the perspectives of key stakeholders, highlighting the need for a holistic approach to KMC that incorporates its adaptability to community settings and contexts.
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| 10. |
- Kwesiga, Doris, et al.
(författare)
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Psychosocial effects of adverse pregnancy outcomes and their influence on reporting pregnancy loss during surveys and surveillance : narratives from Uganda
- 2023
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Ingår i: BMC Public Health. - : BioMed Central (BMC). - 1471-2458. ; 23
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Tidskriftsartikel (refereegranskat)abstract
- Background: In 2021, Uganda had an estimated 25,855 stillbirths and 32,037 newborn deaths. Many Adverse Pregnancy Outcomes (APOs) go unreported despite causing profound grief and other mental health effects. This study explored psychosocial effects of APOs and their influence on reporting these events during surveys and surveillance settings in Uganda.Methods: A qualitative cross-sectional study was conducted in September 2021 in Iganga Mayuge health and demographic surveillance system site, eastern Uganda. Narratives were held with 44 women who had experienced an APO (miscarriage, stillbirth or neonatal death) and 7 men whose spouses had undergone the same. Respondents were purposively selected and the sample size premised on the need for diverse respondents. Reflexive thematic analysis was undertaken, supported by NVivo software.Results: 60.8% of respondents had experienced neonatal deaths, 27.4% stillbirths, 11.8% miscarriages and almost half had multiple APOs. Theme one on psychosocial effects showed that both women and men suffered disbelief, depression, shame and thoughts of self-harm. In theme two on reactions to interviews, most respondents were reminded about their loss. Indeed, some women cried and a few requested termination of the interview. However, many said they eventually felt better, especially where interviewers comforted and advised them. In theme three about why people consent to such interviews, it was due to the respondents' need for sensitization on causes of pregnancy loss and danger signs, plus the expectation that the interview would lead to improved health services. Theme four on suggestions for improving interviews highlighted respondents' requests for a comforting and encouraging approach by interviewers.Conclusion: Psychosocial effects of APOs may influence respondents' interest and ability to effectively engage in an interview. Findings suggest that a multi-pronged approach, including interviewer training in identifying and dealing responsively with grieving respondents, and meeting needs for health information and professional counselling could improve reporting of APOs in surveys and surveillance settings. More so, participants need to understand the purpose of the interview and have realistic expectations.
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