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Item Ethical considerations for research involving pregnant women living with HIV and their young children: a systematic review of the empiric literature and discussion(BMC, 2021-04-01) Raciti, Catherine G.; Enane, Leslie A.; MacDonald, Katherine R.; Whipple, Elizabeth C.; Ott, Mary A.; McHenry, Megan S.; Pediatrics, School of MedicineBackground: The proper and ethical inclusion of PWLHIV and their young children in research is paramount to ensure valid evidence is generated to optimize treatment and care. Little empirical data exists to inform ethical considerations deemed most critical to these populations. Our study aimed to systematically review the empiric literature regarding ethical considerations for research participation of PWLHIV and their young children. Methods: We conducted this systematic review in partnership with a medical librarian. A search strategy was designed and performed within the following electronic databases: Ovid MEDLINE, Embase and CINAHL. We screened titles and abstracts using the following inclusion criteria: (1) a study population of PWLHIV or children under 5 years of age; and (2) collection of qualitative or quantitative data regarding ethics of research participation. Excluded were reviews, commentaries, policy statements, clinical care-related ethics concerns, abstracts, case studies, or studies unrelated to HIV research. Studies were appraised for quality, data were extracted, and studies were qualitatively analyzed using a principle-based ethical framework within the Belmont Report. Results: Of the 7470 titles identified, 538 full-text articles were reviewed for eligibility and only three articles met full criteria for inclusion within this review. While we allowed for inclusion of studies involving young children born to mothers with HIV, only articles focused on PWLHIV were identified. Within the results of these studies, four themes emerged: (1) adequacy of informed consent; (2) consideration of paternal involvement; (3) balancing risks; and (4) access to research and treatment. A strength of this review is that it included perspectives of international research investigators, community leaders, and male partners. However, only two studies collected empiric data from PWLHIV regarding their experiences participating in research CONCLUSION: Researchers and funding agencies should be aware of these considerations and appreciate the value of and critical need for formative research to ensure clinical trials involving PWLHIV promote ethical, well-informed research participation and, ultimately, improve care outcomes. More research is needed to create a comprehensive ethical framework for researchers when conducting studies with PWLHIV.Item “If it benefits someone, it will be good:” perspectives on research participation from pregnant women living with HIV(T&F, 2022) Raciti, Catherine G.; Marsha, Joy; Nafiseh, Amira A.; Masese , Eric R.; Apondi, Edith; McHenry, Megan S.; Pediatrics, School of MedicinePregnant women living with HIV (PWLHIV) are becoming increasingly involved in HIV research; however, the ethical concerns regarding their decision-making related to research participation are understudied. This qualitative study aimed to understand the perspectives and lived research experiences of PWLHIV, intending to identify important considerations to inform best practices. This study used semi-structured interviews (SSIs) of PWLHIV who participated in research studies in Eldoret, Kenya. All interviews were audio-recorded, transcribed, and translated. Qualitative analyses were performed, with line-by-line coding, constant comparison, axial coding, and triangulation to identify central concepts. Twelve PWLHIV participated. Overall, participants had positive experiences with HIV research. Most participants had difficulty distinguishing the differences between the research process and enhanced clinical care. They reported a willingness to participate in future HIV research studies and indicated altruism as the primary motivator. Participants identified their preferences and experiences with recruitment, consenting, reimbursement, and enrolment of infants in HIV research. The largest barrier for participating in HIV research was identified as a concern that participation would lead to HIV disclosure. By understanding the lived experiences of PWLHIV who participate in HIV research, future researchers can design studies and consenting processes to optimize ethical research practices.Item The Influence of Antenatal Partner Support on Pregnancy Outcomes(Mary Ann Liebert, Inc., 2016-07) Cheng, Erika R.; Rifas-Shiman, Sheryl L.; Perkins, Meghan E.; Rich-Edwards, Janet Wilson; Gillman, Matthew W.; Wright, Rosalind; Taveras, Elsie M.; Pediatrics, School of MedicineBACKGROUND: While there has been considerable attention given to the multitude of maternal factors that contribute to perinatal conditions and poor birth outcomes, few studies have aimed to understand the impact of fathers or partners. We examined associations of antenatal partner support with psychological variables, smoking behavior, and pregnancy outcomes in two socioeconomically distinct prebirth cohorts. MATERIALS AND METHODS: Data were from 1764 women recruited from an urban-suburban group practice (Project Viva) and 877 women from urban community health centers (Project ACCESS), both in the Boston area. Antenatal partner support was assessed by the Turner Support Scale. Multivariable linear and logistic regression analyses determined the impact of low antenatal partner support on the outcomes of interest. RESULTS: In early pregnancy, 6.4% of Viva and 23.0% of ACCESS participants reported low partner support. After adjustment, low partner support was cross-sectionally associated with high pregnancy-related anxiety in both cohorts (Viva AOR 1.8; 95% CI: 1.0-3.4 and ACCESS AOR 1.9; 95% CI: 1.1-3.3) and with depression in ACCESS (AOR 1.9; 95% CI: 1.1-3.3). In Viva, low partner support was also related to depression mid-pregnancy (AOR 3.1; 95% CI: 1.7-5.7) and to smoking (AOR 2.2; 95% CI: 1.3-3.8). Birth weight, gestational age, and fetal growth were not associated with partner support. CONCLUSIONS: This study of two economically and ethnically distinct cohorts in the Boston area highlights higher levels of antenatal anxiety, depression, and smoking among pregnant women who report low partner support. Partner support may be an important and potentially modifiable target for interventions to improve pregnancy outcomes.Item Outcomes of retained and disengaged pregnant women living with HIV in Uganda(Public Library of Science, 2021-05-21) Kiragga, Agnes N.; Twinomuhwezi, Ellon; Banturaki, Grace; Achieng, Marion; Nampala, Juliet; Bagaya, Irene; Kigozi, Joanita; Castelnuovo, Barbara; Musick, Beverly S.; Hazra, Rohan; Yiannoutsos, Constantin T.; Wools-Kaloustian, Kara K.; Medicine, School of MedicineIntroduction: Loss-to-follow-up among women living with HIV (WLWHIV) may lead to unfavorable outcomes for both mother and exposed infant. This study traced WLWHIV disengaged from care and their infants and compared their outcomes with those retained in care. Methods: The study included WLWHIV who initiated ART during pregnancy at six public clinics in Uganda. A woman was defined as disengaged (DW) if she had not attended her 6-week post-partum visit by 10 weeks after her estimated date of delivery. DW were matched with retained women (RW) by age and duration on ART. Nurse counselors traced all selected DW via telephone and community visits to assess vital status, infant HIV sero-status and maternal HIV viral load through blood draws. Results: Between July 2017 and July 2018, 734 women (359 DW and 375 RW) were identified for the study. Tracing was attempted on 349 DW and 160 (44.6%) were successfully located and enrolled in the study. They were matched with 162 RW. Among DW, 52 (32.5%) transferred to another health facility. Very few DW, 39.0% were HIV virally suppressed (<1000 copies/ml) compared to RW 89.5%, P<0.001). Among 138 babies born to DW, 4.3% tested positive for HIV compared to 1.4% among babies born to RW (P = 0.163). Conclusion: Pregnant and breastfeeding WLWHIV who disengage from care are difficult to find in urban environments. Many have detectable viral loads, leading to the potential for an increased risk of MTCT. Efforts to reduce disengagement from care are critical for the successful elimination of MTCT in resource-limited settings.Item Pregnancy-Related Information Seeking in Online Health Communities: A Qualitative Study(Springer, 2021) Lu, Yu; Zhang, Zhan; Min, Katherine; Luo, Xiao; He, Zhe; Engineering Technology, School of Engineering and TechnologyPregnancy often imposes risks on women's health. Consumers are increasingly turning to online resources (e.g., online health communities) to look for pregnancy-related information for better care management. To inform design opportunities for online support interventions, it is critical to thoroughly understand consumers' information needs throughout the entire course of pregnancy including three main stages: pre-pregnancy, during-pregnancy, and postpartum. In this study, we present a content analysis of pregnancy-related question posts on Yahoo! Answers to examine how they formulated their inquiries, and the types of replies that information seekers received. This analysis revealed 14 main types of information needs, most of which were "stage-based". We also found that peers from online health communities provided a variety of support, including affirmation of pregnancy, opinions or suggestions, health information, personal experience, and reference to health providers' service. Insights derived from the findings are drawn to discuss design opportunities for tailoring informatics interventions to support consumers' information needs at different pregnancy stages.Item Retention in care and viral suppression in the PMTCT continuum at a large referral facility in western Kenya(Springer, 2022) Humphrey, John M.; Songok, Julia; Ofner, Susan; Musick, Beverly; Alera, Marsha; Kipchumba, Bett; McHenry, Megan S.; Carlucci, James G.; Park, Jun; Mwangi, Winfred; Yiannoutsos, Constantin; Bakoyannis, Giorgos; Wools-Kaloustian, Kara; Medicine, School of MedicineMedical records of pregnant and postpartum women living with HIV and their infants attending a large referral facility in Kenya from 2015 to 2019 were analyzed to identify characteristics associated with retention in care and viral suppression. Women were stratified based on the timing of HIV care enrollment: known HIV-positive (KHP; enrolled pre-pregnancy) and newly HIV-positive (NHP; enrolled during pregnancy). Associations with retention at 18 months postpartum and viral suppression (< 1000 copies/mL) were determined. Among 856 women (20% NHP), retention was 83% for KHPs and 53% for NHPs. Viral suppression was 88% for KHPs and 93% for NHPs, but 19% of women were missing viral load results. In a competing risk model, viral suppression increased by 18% for each additional year of age but was not associated with other factors. Overall, 1.9% of 698 infants with ≥ 1 HIV test result were HIV-positive. Tailored interventions are needed to promote retention and viral load testing, particularly for NHPs, in the PMTCT continuum.Item Trends over time in the knowledge, attitude and practices of pregnant women related to COVID-19: A cross-sectional survey from seven low- and middle-income countries(Wiley, 2023) Jessani, Saleem; Saleem, Sarah; Fogleman, Elizabeth; Billah, Sk Masum; Haque, Rashidul; Figueroa, Lester; Lokangaka, Adrien; Tshefu, Antoinette; Goudar, Shivaprasad S.; Kavi, Avinash; Esamai, Fabian; Mwenchanya, Musaku; Chomba, Elwyn; Patel, Archana; Das, Prabir; Mazariegos, Manolo; Bauserman, Melissa; Petri, William A., Jr.; Krebs, Nancy F.; Derman, Richard J.; Carlo, Waldemar A.; Bucher, Sherri; Hibberd, Patricia L.; Koso-Thomas, Marion; Bann, Carla M.; McClure, Elizabeth M.; Goldenberg, Robert L.; Pediatrics, School of MedicineObjective: To understand trends in the knowledge, attitudes and practices (KAP) of pregnant women related to COVID-19 in seven low- and middle-income countries. Design: Multi-country population-based prospective observational study. Setting: Study sites in Bangladesh, the Demographic Republic of Congo (DRC), Guatemala, India (two sites), Kenya, Pakistan and Zambia. Population: Pregnant women in the Global Network's Maternal and Neonatal Health Registry (MNHR). Methods: Pregnant women enrolled in the MNHR were interviewed to assess their KAP related to COVID-19 from September 2020 through July 2022 across all study sites. Main outcome measures: Trends of COVID-19 KAP were assessed using the Cochran-Armitage test for trend. Results: A total of 52 297 women participated in this study. There were wide inter-country differences in COVID-19-related knowledge. The level of knowledge of women in the DRC was much lower than that of women in the other sites. The ability to name COVID-19 symptoms increased over time in the African sites, whereas no such change was observed in Bangladesh, Belagavi and Guatemala. All sites observed decreasing trends over time in women avoiding antenatal care visits. Conclusions: The knowledge and attitudes of pregnant women related to COVID-19 varied substantially among the Global Network sites over a period of 2 years; however, there was very little change in knowledge related to COVID-19 over time across these sites. The major change observed was that fewer women reported avoiding medical care because of COVID-19 across all sites over time.