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1.  Development and promotion of a national website to improve dissemination of information related to the prevention of mother-to-child HIV transmission (PMTCT) in Tanzania 
BMC Public Health  2015;15:1077.
Websites that address national public health issues provide an important mechanism to improve health education and services in resource limited countries. This article describes the development, promotion and initial evaluation of a national website to increase access to information and resources about prevention of mother-to-child transmission of HIV (PMTCT) among healthcare workers and PMTCT stakeholders in Tanzania.
A participatory approach, involving the Tanzania Ministry of Health and Social Welfare (MOHSW) and key PMTCT stakeholders, was used to develop and manage the online PMTCT National Resource Center (NRC), The website was created with a content management system software system that does not require advanced computer skills and facilitates content updates and site management. The PMTCT NRC hosts related regularly updated PMTCT-related news, resources and publications. Website implementation, access and performance were evaluated over two years using Google Analytics data about visits, page views, downloads, bounce rates and location of visitors, supplemented by anecdotal feedback.
Following its launch in July 2013, the PMTCT NRC website received a total of 28,400 visits, with 66,463 page views, over 2 years; 30 % of visits were from returning visitors. During year 1, visits increased by 80 % from the first to second 6 month period and then declined slightly (9–11 %) but remained stable in Year 2. Monthly visits spiked by about 70 % during October 2013 and January 2014 in response to the release and promotion of revised national PMTCT guidelines and training manuals. The majority of visitors came from primarily urban areas in Tanzania (50 %) and from other African countries (16 %). By year 2, over one-third of visitors used mobile devices to access the site.
The successfully implemented PMTCT NRC website provides centralized, easily accessed information designed to address the needs of clinicians, educators and program partners in Tanzania. Ongoing involvement of the MOHSW and key stakeholders are essential ensure the website’s growth, effectiveness and sustainability. Additional efforts are needed to expand use of the PMTCT NRC throughout the country. Future evaluations should examine the role of the website in supporting implementation of national PMTCT guidelines and services in Tanzania.
PMCID: PMC4619088  PMID: 26494170
2.  Integrating Health and Prevention Services in Syringe Access Programs: A Strategy to Address Unmet Needs in a High-Risk Population 
Public Health Reports  2014;129(Suppl 1):26-32.
Injection drug users are at a high risk for a number of preventable diseases and complications of drug use. This article describes the implementation of a nurse-led health promotion and disease prevention program in New Jersey's syringe access programs. Initially designed to target women as part of a strategy to decrease missed opportunities for perinatal HIV prevention, the program expanded by integrating existing programs and funding streams available through the state health department. The program now offers health and prevention services to both men and women, with 3,488 client visits in 2011. These services extend the reach of state health department programs, such as adult vaccination and hepatitis and tuberculosis screening, which clients would have had to seek out at multiple venues. The integration of prevention, treatment, and health promotion services in syringe access programs reaches a vulnerable and underserved population who otherwise may receive only urgent and episodic care.
PMCID: PMC3862985  PMID: 24385646
3.  Barriers to Medication Adherence in HIV-Infected Children and Youth Based on Self- and Caregiver Report 
Pediatrics  2012;129(5):e1244-e1251.
Nonadherence to antiretroviral therapy among children/youth with HIV often is associated with disease progression. This study examined the agreement between child and caregiver perceptions of barriers to adherence and factors associated with these barriers.
Children/youth with perinatally acquired HIV and their parents/caregivers (n = 120 dyads) completed a questionnaire about 19 potential barriers to adherence to the child’s antiretroviral therapy regimen. Agreement between the 2 reports was measured via the kappa statistic. Factors associated with the barriers were assessed by using multiple logistic regression.
Of the 120 children, 55% were African American, 54% were boys, and the average age was 12.8 years. The most frequently reported barrier by either the caregiver or youth was “forgot.” There were varying degrees of agreement between child and caregiver on the following barriers: “forgot,” “taste,” “child was away from home,” “child refused,” and “child felt good.” Children who knew their HIV status were more likely to report logistical barriers, such as scheduling issues. Children with a biological parent as their caregiver were more likely to report regimen or fear of disclosure as a barrier.
Lack of agreement was observed for more than half of the studied barriers, indicating discrepancies between children’s and caregivers’ perceptions of factors that influence medication-taking. The findings suggest a need for interventions that involve both child and caregiver in the tasks of remembering when to administer the child’s medications, sustaining adherence, and appropriately transitioning medication responsibility to the youth.
PMCID: PMC3340587  PMID: 22508915
children; HIV; adherence; adolescents; pediatric
4.  Building Social Networks for Health Promotion: Shout-out Health, New Jersey, 2011 
Building social networks for health promotion in high-poverty areas may reduce health disparities. Community involvement provides a mechanism to reach at-risk people with culturally tailored health information. Shout-out Health was a feasibility project to provide opportunity and support for women at risk for or living with human immunodeficiency virus infection to carry out health promotion within their informal social networks.
Community Context
The Shout-out Health project was designed by an academic–community agency team. During 3 months, health promotion topics were chosen, developed, and delivered to community members within informal social networks by participants living in Paterson and Jersey City, New Jersey.
We recruited women from our community agency partner’s clients; 57 women participated in in-person or online meetings facilitated by our team. The participants identified and developed the health topics, and we discussed each topic and checked it for message accuracy before the participants provided health promotion within their informal social networks. The primary outcome for evaluating feasibility included the women’s feedback about their experiences and the number of times they provided health promotion in the community. Other data collection included participant questionnaires and community-recipient evaluations.
More than half of the participants reported substantial life challenges, such as unemployment and housing problems, yet with technical support and a modest stipend, women in both groups successfully provided health promotion to 5,861 people within their informal social networks.
Shout-out Health was feasible and has implications for building social networks to disseminate health information and reduce health disparities in communities.
PMCID: PMC3760081  PMID: 23987253
5.  Preconception and Contraceptive Care for Women Living with HIV 
Women living with HIV have fertility desires and intentions that are similar to those of uninfected women, and with advances in treatment most women can realistically plan to have and raise children to adulthood. Although HIV may have adverse effects on fertility, recent studies suggest that antiretroviral therapy may increase or restore fertility. Data indicate the increasing numbers of women living with HIV who are becoming pregnant, and that many pregnancies are unintended and contraception is underutilized, reflecting an unmet need for preconception care (PCC). In addition to the PCC appropriate for all women of reproductive age, women living with HIV require comprehensive, specialized care that addresses their unique needs. The goals of PCC for women living with HIV are to prevent unintended pregnancy, optimize maternal health prior to pregnancy, improve maternal and fetal outcomes in pregnancy, prevent perinatal HIV transmission, and prevent HIV transmission to an HIV-uninfected sexual partner when trying to conceive. This paper discusses the rationale for preconception counseling and care in the setting of HIV and reviews current literature relevant to the content and considerations in providing PCC for women living with HIV, with a primary focus on well-resourced settings.
PMCID: PMC3477542  PMID: 23097595
6.  Medication Adherence in Children and Adolescents with HIV Infection: Associations with Behavioral Impairment 
AIDS Patient Care and STDs  2011;25(3):191-200.
The impact of behavioral functioning on medication adherence in children with perinatally acquired HIV infection is not well-explored, but has important implications for intervention. This report addresses the relationship between behavioral functioning and child self-report or caregiver report of medication adherence among children and adolescents enrolled in Pediatric AIDS Clinical Trials Group Protocol 219C (conducted 2000–2007). A total of 1134 participants, aged 3–17 years, received a behavioral evaluation and adherence assessment. Complete adherence was defined as taking 100% of prescribed antiretroviral medications during three days preceding the study visit. Multivariable logistic regression models were used to evaluate associations between adherence and behavioral functioning, adjusting for potential confounders, including demographic, psychosocial, and health factors. Children demonstrated higher than expected rates of behavioral impairment (≈7% expected with T > 65) in the areas of conduct problems (14%, z = 7.0, p < 0.001), learning problems (22%, z = 12.2, p < 0.001), somatic complaints (22%, z = 12.6, p < 0.001), impulsivity-hyperactivity (20%, z = 11.1, p < 0.001), and hyperactivity (19%, z = 10.6, p < 0.001). Children with behavioral impairment in one or more areas had significantly increased odds of nonadherence [adjusted odds ratio (aOR) = 1.49, p = 0.04]. The odds of nonadherence were significantly higher for those with conduct problems and general hyperactivity (aOR = 2.03, p = 0.005 and aOR = 1.68, p = 0.02, respectively). Psychosocial and health factors, such as recent stressful life events and higher HIV RNA levels, were also associated with nonadherence. Knowledge of behavioral, health, and social influences affecting the child and family should guide the development of appropriate, evidence-based interventions for medication adherence.
PMCID: PMC3101948  PMID: 21323533
7.  Routine Prenatal HIV Testing: Women’s Concerns and Their Strategies for Addressing Concerns 
Maternal and Child Health Journal  2011;16(2):464-469.
The purpose of this exploratory study was to solicit women’s opinions about the process of routine prenatal HIV testing to identify strategies for routine testing that will address women’s concerns, increase their level of comfort with testing, and support universal prenatal HIV testing. A convenience sample of English-speaking women between 18 and 45 years of age who were HIV-negative or of unknown HIV status were recruited for focus groups at four diverse community sites in four states. Focus group discussion questions addressed health care provider approaches and actions that would make a woman feel more comfortable with the process of routine prenatal HIV testing. Twenty-five women agreed to participate; most women (64%) were of Black, non-Hispanic race/ethnicity; 44% were 25–34 years of age. Thematic analysis of women’s concerns about routine prenatal HIV testing fell into the following categories: fear, protecting the baby, protecting the woman, confidentiality, and stigma. Women’s strategies for addressing these concerns were related to themes of education and information, normalizing HIV testing, patient–provider relationships, systems, and private communication. Participants offered numerous insightful and practical suggestions for addressing their concerns thereby supporting universal routine prenatal HIV testing. The themes that arose in this study support the conclusion that women will be more comfortable with routine prenatal HIV testing if they are fully informed and knowledgeable about the rationale for HIV testing during pregnancy and their right to decline, and if testing is carried out in a confidential and supportive health care environment.
PMCID: PMC3262134  PMID: 21301944
HIV testing; Prenatal care; HIV prevention
8.  The Role of Cognitive Functioning in Medication Adherence of Children and Adolescents with HIV Infection 
Journal of Pediatric Psychology  2008;34(2):164-175.
Objective To evaluate the relationship between cognitive functioning and medication adherence in children and adolescents with perinatally acquired HIV infection. Methods Children and adolescents, ages 3–18 (N = 1,429), received a cognitive evaluation and adherence assessment. Multiple logistic regression models were used to identify associations between adherence and cognitive status, adjusting for potential confounding factors. Results Children's average cognitive performance was within the low-average range; 16% of children were cognitively impaired (MDI/FSIQ <70). Cognitive status was not associated with adherence to full medication regimens; however, children with borderline/low average cognitive functioning (IQ 70–84) had increased odds of nonadherence to the protease inhibitor class of antiretroviral therapy. Recent stressful life events and child health characteristics, such as HIV RNA detectability, were significantly associated with nonadherence. Conclusion Cognitive status plays a limited role in medication adherence. Child and caregiver psychosocial and health characteristics should inform interventions to support adherence.
PMCID: PMC2722123  PMID: 18647794
adolescents; children; cognitive functioning; HIV; medication adherence
9.  Allocation of Family Responsibility for Illness Management in Pediatric HIV 
Journal of Pediatric Psychology  2008;34(2):187-194.
Objective The purpose of the study is to describe allocation of responsibility for illness management in families of children and adolescents perinatally infected with HIV. Methods A total of 123 youth (ages 8–18) and caregivers completed family responsibility and medication adherence questionnaires as part of a substudy of Pediatric AIDS Clinical Trials Group protocol 219c. Results Approximately one-fourth of the youth reported being fully responsible for taking medications. A smaller percentage of caregivers reported full youth responsibility. Older youth and caregivers of older youth reported higher degree of youth responsibility for medication-related tasks, though age was unrelated to adherence. Caregiver report of greater responsibility for medications was associated with better adherence. Conclusions Caregivers are likely to transition responsibility for HIV care to older youth but this transition was not always successful as evidenced by poor medication adherence. Interventions supporting successful transition may improve adherence and subsequently health outcomes in pediatric HIV.
PMCID: PMC2722122  PMID: 18586756
adherence; adolescents; children; HIV/AIDS; parents
10.  Impact of Disclosure of HIV Infection on Health-Related Quality of Life Among Children and Adolescents With HIV Infection 
Pediatrics  2009;123(3):935-943.
Little is known concerning the impact of HIV status disclosure on quality of life, leaving clinicians and families to rely on research of children with other terminal illnesses.
The purpose of this work was to examine the impact of HIV disclosure on pediatric quality of life and to describe the distribution of age at disclosure in a perinatally infected pediatric population.
A longitudinal analysis was conducted of perinatally HIV-infected youth ≥5 years of age enrolled in a prospective cohort study, Pediatric AIDS Clinical Trials Group 219C, with ≥1 study visit before and after HIV disclosure. Age-specific quality-of-life instruments were completed by primary caregivers at routine study visits. The distribution of age at disclosure was summarized. Six quality-of-life domains were assessed, including general health perception, symptom distress, psychological status, health care utilization, physical functioning, and social/role functioning. For each domain, mixed-effects models were fit to estimate the effect of disclosure on quality of life.
A total of 395 children with 2423 study visits were analyzed (1317 predisclosure visits and 1106 postdisclosure visits). The median age at disclosure was estimated to be 11 years. Older age at disclosure was associated with earlier year of birth. Mean domain scores were not significantly different at the last undisclosed visit compared with the first disclosed visit, with the exception of general health perception. When all of the visits were considered, 5 of 6 mean domain scores were lower after disclosure, although the differences were not significant. In mixed-effects models, disclosure did not significantly impact quality of life for any domain.
Age at disclosure decreased significantly over time. There were no statistically significant differences between predisclosure and postdisclosure quality of life; therefore, disclosure should be encouraged at an appropriate time.
PMCID: PMC2697844  PMID: 19255023
quality of life; HIV; children and adolescents

Results 1-10 (10)