Factors that influence disclosure and program participation among pregnant HIV-positive women: a mixed methods study in Lilongwe, Malawi

Background: Programs for the prevention of mother-to-child transmission (PMTCT) of HIV are increasingly available in low-resource settings. Challenges, such as HIV disclosure, impede participation by pregnant HIV-positive women. This study describes factors that influence women's willingness to participate in PMTCT programs and explores factors associated with HIV disclosure by pregnant women to their partners in Lilongwe, Malawi. Methods: This study was conducted in three antenatal clinics from June 2006-May 2007. Qualitative interviews were conducted with 9 clinic nurses, 4 community nurses, and 30 pregnant HIV-positive women within a week of diagnosis. An additional twelve clinic nurses participated in two focus groups. A quantitative survey was administered to 300 HIV-positive women, using probability sampling. Results: The common facilitator for participation identified by women and providers was women's desire to know their disease status. Providers believed women's high level of PMTCT knowledge contributed to participation. The main barrier to participation identified by women and providers was the culturally dominant role of partners in decision-making. Despite provider's belief that HIV disclosure was a barrier to participation, most women (90%) disclosed their HIV status to their partner, and most (73%) did so early (day of diagnosis). Of women who disclosed, almost half (47%) told more than one person. Women who believed they were infected by their partner were more likely to disclose (OR=2.82, 95% CI 1.17, 6.81). Women who tested for HIV before their partner were more likely to disclose early (OR=2.26, 95% CI 1.14, 4.48) and to more than one person (OR=2.58, 95% CI 1.39, 4.78). Reasons women disclosed to their partners were often the same reasons nurses promoted in post-test counseling, specifically cultural obligation and communication norms with partners, belief the partner infected the woman, negotiation for condom use, and explanation for illness. Conclusions: Participation can be enhanced through outreach to men and women to increase knowledge of PMTCT and to promote clinic services. Post-test counseling should encourage participation and HIV disclosure. Providers should be educated that HIV disclosure was high and that women's perceptions of the source of HIV infection and of testing before their partners were powerful motivators for disclosure

Access to HIV prevention and care for HIV-exposed and HIV-infected children : a qualitative study in rural and urban Mozambique

Background: Follow-up of HIV-exposed children for the delivery of prevention of mother-to-child transmission services and for early diagnosis and treatment of HIV infection is critical to their survival. Despite efforts, uptake of postnatal care for these children remains low in many sub-Saharan African countries. Methods: A qualitative study was conducted in three provinces in Mozambique to identify motivators and barriers to improve uptake of and retention in HIV prevention, care and treatment services for HIV-exposed and HIV-infected children. Participant recommendations were also gathered. Individual interviews (n = 79) and focus group discussions (n = 32) were conducted with parents/caregivers, grandmothers, community leaders and health care workers. Using a socioecological framework, the main themes identified were organized into multiple spheres of influence, specifically at the individual, interpersonal, institutional, community and policy levels. Results: Study participants reported factors such as seeking care outside of the conventional health system and disbelief in test results as barriers to use of HIV services. Other key barriers included fear of disclosure at the interpersonal level and poor patient flow and long waiting time at the institutional level. Key facilitators for accessing care included having hope for children's future, symptomatic illness in children, and the belief that health facilities were the appropriate places to get care. Conclusions: The results suggest that individual-level factors are critical drivers that influence the health-seeking behavior of caregivers of HIV-exposed and HIV-infected children in Mozambique. Noted strategies are to provide more information and awareness on the benefits of early pediatric testing and treatment with positive messages that incorporate success stories, to reach more pregnant women and mother-child pairs postpartum, and to provide counseling during tracing visits. Increasing uptake and retention may be achieved by improving patient flow at the institutional level at health facilities, by addressing concerns with family decision makers, and by working with community leaders to support the uptake of services for HIV-exposed children for essential preventive care

Continuous Chest Compression Cardiopulmonary Resuscitation Training Promotes Rescuer Self-Confidence and Increased Secondary Training: A Hospital-Based Randomized Controlled Trial

Objective: Recent work suggests that delivery of continuous chest compression cardiopulmonary resuscitation is an acceptable layperson resuscitation strategy, although little is known about layperson preferences for training in continuous chest compression cardiopulmonary resuscitation. We hypothesized that continuous chest compression cardiopulmonary resuscitation education would lead to greater trainee confidence and would encourage wider dissemination of cardiopulmonary resuscitation skills compared to standard cardiopulmonary resuscitation training (30 compressions: two breaths). Design: Prospective, multicenter randomized study. Setting: Three academic medical center inpatient wards. Subjects: Adult family members or friends (\u3e=18 yrs old) of inpatients admitted with cardiac-related diagnoses. Interventions: In a multicenter randomized trial, family members of hospitalized patients were trained via the educational method of video self-instruction. Subjects were randomized to continuous chest compression cardiopulmonary resuscitation or standard cardiopulmonary resuscitation educational modes. Measurements: Cardiopulmonary resuscitation performance data were collected using a cardiopulmonary resuscitation skill-reporting manikin. Trainee perspectives and secondary training rates were assessed through mixed qualitative and quantitative survey instruments. Main Results: Chest compression performance was similar in both groups. The trainees in the continuous chest compression cardiopulmonary resuscitation group were significantly more likely to express a desire to share their training kit with others (152 of 207 [73%] vs. 133 of 199 [67%], p = .03). Subjects were contacted 1 month after initial enrollment to assess actual sharing, or “secondary training.” Kits were shared with 2.0 ± 3.4 additional family members in the continuous chest compression cardiopulmonary resuscitation group vs. 1.2 ± 2.2 in the standard cardiopulmonary resuscitation group (p = .03). As a secondary result, trainees in the continuous chest compression cardiopulmonary resuscitation group were more likely to rate themselves “very comfortable” with the idea of using cardiopulmonary resuscitation skills in actual events than the standard cardiopulmonary resuscitation trainees (71 of 207 [34%] vs. 57 of 199 [28%], p = .08). Conclusions: Continuous chest compression cardiopulmonary resuscitation education resulted in a statistically significant increase in secondary training. This work suggests that implementation of video self-instruction training programs using continuous chest compression cardiopulmonary resuscitation may confer broader dissemination of life-saving skills and may promote rescuer comfort with newly acquired cardiopulmonary resuscitation knowledge

Effect of cytomegalovirus infection on breastfeeding transmission of HIV and on the health of infants born to HIV-infected mothers

Cytomegalovirus (CMV) infection can be acquired in utero or postnatally through horizontal transmission and breastfeeding. The effect of postnatal CMV infection on postnatal HIV transmission is unknown

Evaluating Nurses' Implementation of an Infant-Feeding Counseling Protocol for HIV-Infected Mothers: The Ban Study in Lilongwe, Malawi

A process evaluation of nurses’ implementation of an infant-feeding counseling protocol was conducted for the Breastfeeding, Antiretroviral and Nutrition (BAN) Study, a prevention of mother-to-child transmission of HIV clinical trial in Lilongwe, Malawi. Six trained nurses counseled HIV-infected mothers to exclusively breastfeed for 24 weeks postpartum and to stop breastfeeding within an additional four weeks. Implementation data were collected via direct observations of 123 infant feeding counseling sessions (30 antenatal and 93 postnatal) and interviews with each nurse. Analysis included calculating a percent adherence to checklists and conducting a content analysis for the observation and interview data. Nurses were implementing the protocol at an average adherence level of 90% or above. Although not detailed in the protocol, nurses appropriately counseled mothers on their actual or intended formula milk usage after weaning. Results indicate that nurses implemented the protocol as designed. Results will help to interpret the BAN Study’s outcomes

Adherence to extended postpartum antiretrovirals is associated with decreased breast milk HIV-1 transmission

Estimate association between postpartum antiretroviral adherence and breastmilk HIV-1 transmissio

Plasma Micronutrient Concentrations Are Altered by Antiretroviral Therapy and Lipid-Based Nutrient Supplements in Lactating HIV-Infected Malawian Women

Background: Little is known about the influence of antiretroviral therapy with or without micronutrient supplementation on the micronutrient concentrations of HIV-infected lactating women in resource-constrained settings

Bi-allelic Loss-of-Function CACNA1B Mutations in Progressive Epilepsy-Dyskinesia.

The occurrence of non-epileptic hyperkinetic movements in the context of developmental epileptic encephalopathies is an increasingly recognized phenomenon. Identification of causative mutations provides an important insight into common pathogenic mechanisms that cause both seizures and abnormal motor control. We report bi-allelic loss-of-function CACNA1B variants in six children from three unrelated families whose affected members present with a complex and progressive neurological syndrome. All affected individuals presented with epileptic encephalopathy, severe neurodevelopmental delay (often with regression), and a hyperkinetic movement disorder. Additional neurological features included postnatal microcephaly and hypotonia. Five children died in childhood or adolescence (mean age of death: 9 years), mainly as a result of secondary respiratory complications. CACNA1B encodes the pore-forming subunit of the pre-synaptic neuronal voltage-gated calcium channel Cav2.2/N-type, crucial for SNARE-mediated neurotransmission, particularly in the early postnatal period. Bi-allelic loss-of-function variants in CACNA1B are predicted to cause disruption of Ca2+ influx, leading to impaired synaptic neurotransmission. The resultant effect on neuronal function is likely to be important in the development of involuntary movements and epilepsy. Overall, our findings provide further evidence for the key role of Cav2.2 in normal human neurodevelopment.MAK is funded by an NIHR Research Professorship and receives funding from the Wellcome Trust, Great Ormond Street Children's Hospital Charity, and Rosetrees Trust. E.M. received funding from the Rosetrees Trust (CD-A53) and Great Ormond Street Hospital Children's Charity. K.G. received funding from Temple Street Foundation. A.M. is funded by Great Ormond Street Hospital, the National Institute for Health Research (NIHR), and Biomedical Research Centre. F.L.R. and D.G. are funded by Cambridge Biomedical Research Centre. K.C. and A.S.J. are funded by NIHR Bioresource for Rare Diseases. The DDD Study presents independent research commissioned by the Health Innovation Challenge Fund (grant number HICF-1009-003), a parallel funding partnership between the Wellcome Trust and the Department of Health, and the Wellcome Trust Sanger Institute (grant number WT098051). We acknowledge support from the UK Department of Health via the NIHR comprehensive Biomedical Research Centre award to Guy's and St. Thomas' National Health Service (NHS) Foundation Trust in partnership with King's College London. This research was also supported by the NIHR Great Ormond Street Hospital Biomedical Research Centre. J.H.C. is in receipt of an NIHR Senior Investigator Award. The research team acknowledges the support of the NIHR through the Comprehensive Clinical Research Network. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR, Department of Health, or Wellcome Trust. E.R.M. acknowledges support from NIHR Cambridge Biomedical Research Centre, an NIHR Senior Investigator Award, and the University of Cambridge has received salary support in respect of E.R.M. from the NHS in the East of England through the Clinical Academic Reserve. I.E.S. is supported by the National Health and Medical Research Council of Australia (Program Grant and Practitioner Fellowship)

Towards the Elimination of Pediatric HIV: Enhancing Maternal, Sexual, and Reproductive Health Services

Almost 10 years ago, the United Nations adopted a comprehensive, four-pronged approach for the prevention of mother-to-child transmission of HIV (PMTCT). Despite all four prongs being central to the elimination of pediatric HIV, and the health of the mother being critical to reaching this goal, PMTCT programs have historically focused more attention on preventing HIV transmission from mother to child (prong 3) than on preventing HIV in women of reproductive age (prong 1) and preventing unintended pregnancies in women living with HIV (prong 2). In this commentary, experts from the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) argue that within the context of efforts to eliminate pediatric HIV, there are many ways to keep women living with HIV alive and at the center of the response to the global epidemic. One of the ways to do this is to enhance maternal and sexual and reproductive health (SRH) services. Within the elimination agenda, integration and linkages between PMTCT and comprehensive SRH services can keep mothers alive and at the center of the response. The commentary highlights some of the foundation’s global health work supporting, evaluating and enhancing maternal and SRH services provided to women living with HIV and proposes concrete actions for donors, researchers, policy makers and program implementers to further enhance maternal and SRH services within the context of PMTCT. If keeping women living with HIV is an integral component of the elimination of pediatric HIV agenda, maternal and SRH research, policies and programs need to be strengthened within the context of PMTCT. Donor funding and priorities for PMTCT also need to be more supportive of primary prevention of HIV infection among women of childbearing age and preventing unintended pregnancies among women living with HIV. Key Words: HIV/AIDS • Elimination of pediatric HIV • PMTCT • Reproductive and sexual health • Maternal healt

Towards the Elimination of Pediatric HIV: Enhancing Maternal, Sexual, and Reproductive Health Services

Almost 10 years ago, the United Nations adopted a comprehensive, four-pronged approach for the prevention of mother-to-child transmission of HIV (PMTCT). Despite all four prongs being central to the elimination of pediatric HIV, and the health of the mother being critical to reaching this goal, PMTCT programs have historically focused more attention on preventing HIV transmission from mother to child (prong 3) than on preventing HIV in women of reproductive age (prong 1) and preventing unintended pregnancies in women living with HIV (prong 2). In this commentary, experts from the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) argue that within the context of efforts to eliminate pediatric HIV, there are many ways to keep women living with HIV alive and at the center of the response to the global epidemic. One of the ways to do this is to enhance maternal and sexual and reproductive health (SRH) services. Within the elimination agenda, integration and linkages between PMTCT and comprehensive SRH services can keep mothers alive and at the center of the response. The commentary highlights some of the foundation’s global health work supporting, evaluating and enhancing maternal and SRH services provided to women living with HIV and proposes concrete actions for donors, researchers, policy makers and program implementers to further enhance maternal and SRH services within the context of PMTCT. If keeping women living with HIV is an integral component of the elimination of pediatric HIV agenda, maternal and SRH research, policies and programs need to be strengthened within the context of PMTCT. Donor funding and priorities for PMTCT also need to be more supportive of primary prevention of HIV infection among women of childbearing age and preventing unintended pregnancies among women living with HIV