EQUITY Special Issue: A Summary
We are pleased to bring you this AIDS Care Special Issue: Equity Supplement. For your convenience, we have developed summaries for the research articles contained in this issue.
Promoting uptake of child HIV testing: An evaluation of the role of a home visiting program for orphans and vulnerable children in South Africa
Thurman et al.
Population: Orphans and Vulnerable Children
Topic/Key Words: HIV counseling and testing (HCT); community-based initiatives
Geographic Region: South Africa, Peri-Urban
The Research Need: HIV counseling and testing (HCT) is critical for children as they are a stepping-stone to care and treatment. Currently, significant shortfalls in HCT coverage persist, notably among orphans and other vulnerable populations.
The Findings: This study examined the effects of a home visiting program, Future Families, in South Africa on orphaned and vulnerable children’s uptake of HCT. Research indicated that Future Families home visiting program contributed to increased rates of HIV testing for children compared to those who were not part of the program. These results demonstrate the potential that community-based initiatives have on increasing HCT access among high-risk children.
Underage and Underserved: Reaching Young Women Who Sell Sex in Zimbabwe
Busza et al.
Population: Young women who sell sex(YWSS)
Topic/Key Words: Sex workers; interventions; local programs
Geographic Region: Zimbabwe, Southern Africa
The Research Need: Young women who sell sex (YWSS) in Southern Africa are highly vulnerable to HIV, as the risks of being young and female in a high prevalence settings combine with those of commercial sex. Compared to older sex workers, YWSS are less able to negotiate safe sex, more likely to have higher-risk partners, and less likely to use available health services. Despite the large number of programs for adolescent girls and young women in the general population and those targeting sex workers, few interventions have brought the aims, resources, and skills from these programs together to address the needs of YWSS.
The Findings: This paper presents findings of a process evaluation to assess strengths, identify challenges, and recommend changes to CeSHHAR’s pilot Activity Pack program, the first program targeting YWSS in Zimbabwe. Findings showed that over one year, the program proved viable to staff and acceptable to participants. Given enhanced vulnerability of YWSS, this program provides one workable model for reaching this underserved group.
I don’t know what I am doing because I am doing everything: Perceptions and experiences of nurses about HIV counseling and testing among children in Free State Province, South Africa
Olaleye et al.
Population: Paediatric Nurses
Topic/Key Words: HIV Counseling and Testing (HCT); Children; Caregivers; Stigma
Geographic Region: South Africa
The Research Need: HIV Counseling and Testing (HCT) has been described as an entry point into HIV prevention, care and support. While HIV/AIDS constitute a significant health burden in South Africa, testing and counseling of HIV-exposed children are inadequate. It is therefore imperative that factors relating to paediatric HCT services offered by health workers are examined.
The Findings: This study was conducted to explore and describe the perceptions and experiences of trained professional nurses regarding HIV counseling and testing among children. The study identified refusal of consent, work overload, lack of encouragement, and poor record keeping as barriers to HCT among children. Developing clear guidance and policies to resolve issues relating to consent, recruit more healthcare providers, improve provider-initiated counseling and testing among children, and address structural issues in the society to reduce stigma and discrimination were identified as key priority issues by majority of the participants.
Closing the Delivery Gaps in Pediatric HIV Care in Togo, West Africa: Using the Care Delivery Value Chain Framework to Direct Quality Improvement
Fiori et al.
Topic/Key Words: Paediatric Care; Care Delivery
Geographic Region: Togo, West Africa
The Research Need: Providing quality care for all children living with HIV/AIDS remains a global challenge and requires the development of new healthcare delivery strategies. The Care Delivery Value Chain (CDVC) is a framework that maps activities required to provide effective and responsive care for a patient with a particular disease across the continuum of care. The CDVC framework has the potential to significantly advance the field of healthcare delivery science by offering a strategy to close healthcare delivery gaps, including gaps in paediatric HIV/AIDS treatment.
The Findings: This case study covers the experience of employing the CDVC framework with the aim of improving care for paediatric patients living with HIV/AIDS in northern Togo, West Africa. The study found that utilizing a CDVC framework to identify and prioritize quality improvement activities was an effective strategy to improve care delivery over the full cycle of HIV/AIDS care for paediatric patients. It provided a framework to drive meaningful, strategic action to improve paediatric HIV care in Togo.
Video observations of treatment administration to children on ART in rural KwaZulu-Natal
Coetzee et al.
Population: Caregivers of HIV+ children (ages 0-5)
Topic/Key Words: Caregivers, ART-adherence, Drug Resistance, Children
Geographic Region: South Africa
The Research Need: For children younger than five years, caregivers are responsible for the measurement and administration of antiretroviral medication doses to children. Acquired drug resistance to antiretroviral therapy (ART) is prevalent amongst children in South Africa, and poor adherence to the dosing regimen by caregivers is associated with this problem.
The Findings: The aim of this study was to document the barriers to and facilitators of adherence to ART among children younger than five years in a rural area of South Africa. The results identified contextual and medication-related factors influencing adherence. Although the majority of children in this sample took their medicine successfully, the way in which medications were prepared and administered by their caregivers was problematic. In the context of emerging drug resistance, efforts are needed to carefully monitor caregiver knowledge of treatment administration by healthcare workers during monthly clinic visits.
“It’s because they care”: Understanding pathways to classroom concentration problems among HIV-affected children and youth in western Kenya
Skovdal et al.
Topic/Key Words: Education; Caregivers; Poverty; Marginalization
Geographic Region: Kenya
The Research Need: Children and young people living in households affected by HIV are experiencing poorer educational outcomes compared to their peers. Care ethics, household poverty and familial HIV are central to understanding the classroom concentration problems of HIV-affected pupils.
The Findings: This article explores how different forms of marginalization can undermine the education of HIV-affected children. The analysis revealed three core pathways to classroom concentration problems amongst HIV-affected pupils. One, a general ‘lack of care’ and neglect in the context of household poverty and illness; two, some HIV-affected pupils play a key role in keeping their household afloat, generating food and income as well as providing practical support; and three, many participating pupils had their minds at home (‘caring about’). To ensure school-going children and youth affected by HIV have the same opportunities as their peers, education initiatives must simultaneously alleviate both household poverty and other challenges pertaining to familial HIV.
Resilience in Perinatal HIV+ Adolescents in South Africa
Small et al.
Topic/Key Words: PHIV+; Caregivers; Community; Stigma; Mental Health
Geographic Region: South Africa
The Research Need: Due to increased access of antiretroviral treatment (ART) the numbers of prenatally HIV infected (PHIV+) youth that are surviving into adulthood are also increasing. There is a set of complex issues related to identification, care, and treatment of children with perinatal HIV infection but there have been few studies examining these high-risk populations, particularly in ways that avoid promoting only deficit-focused perspectives on PHIV+ adolescents.
The Findings: The study examined the mental health outcomes in PHIV+ early adolescents with focus on the contextual, social and self-regulatory factors, which may facilitate their health and wellbeing. Despite the context of poverty and few resources, this study suggests that the mechanisms with which PHIV+ adolescents and their caregivers adapt and respond to a chronic illness are as much a function of the familial and community resources to which they have access as it is to the availability of early treatment. This study provides an important basis for further developing family and evidence-based interventions that also promote youth self-regulation skills to promote the health and mental health of PHIV+ youth.
Shortcomings of adherence counseling provided to caregivers of children receiving antiretroviral therapy (ART) in rural South Africa
Coetzee et al.
Topic/Key Words: antiretroviral therapy (ART); caregivers of children; ART Counseling
Geographic Region: South Africa
The Research Need: In order to achieve optimal benefits of antiretroviral therapy (ART), caregivers of children receiving ART are required to attend routine clinic visits monthly and administer medication to the child as prescribed. Yet, the level of adherence to these behaviours varies considerably in many settings.
The Findings: The purpose of the study was to observe and document the content of adherence counseling sessions that caregivers attending rural clinics in Kwa-Zulu Natal receive. The results showed that caregivers attending a public healthcare facility do not receive adequate adherence counseling and that training and support for counselors is insufficient. This paper calls attention to the sub-optimal level of counseling provided to patients on ART and the urgent need to standardize and improve the training, support and debriefing provided to counselors.
Analysis of the Cultural and Psychosocial Factors Associated with Adherence to Antiretroviral Therapy in Adolescents with Perinatal HIV-1 Infection in Panama from a Gender Perspective
Estripeaut et al.
Topic/Key Words: ART-adherence; Gender
Geographic Region: Panama
The Research Need: Adherence is vital for an effective antiretroviral treatment, however, adolescents are a vulnerable population dealing with many factors that may contribute to jeopardizing their adherence to lifelong treatment. To better ensure adherence to treatment plans, there is a need to improve the understanding of the characteristics of the population and generate an appropriate treatment approach.
The Findings: This is the first study that explores the social and psychosocial actors associated with adherence among adolescents with perinatal HIV infection in Panama from a gender perspective. The study found generally poor treatment adherence for adolescents with no remarkable differences found in regard to the gender perspective. Most adolescents still depend on their female relatives to remind them to take their medications, indicating that educational programs involving patients and family members are warranted to improve the adolescents’ independence and adherence-related habits.
Achieving equity in HIV-treatment outcomes: Can social protection improve adolescent ART-adherence in South Africa?
Cluver et al.
Topic/Key Words: ART-adherence; social protection
Geographic Region: South Africa
The Research Need: Low ART-adherence amongst adolescents causes morbidity, mortality and onwards HIV-transmission. Studying effective adherence-promoting interventions among adolescents can help inform effective programmatic approaches to adolescent HIV-treatment.
The Findings: This study examined associations of ten potential social protection provisions with ART-adherence among HIV-positive adolescents. The findings reaffirmed that social protection combinations remain strongly associated with reductions in non-adherence—independently of a wide range of sociodemographic, HIV-related and healthcare factors. Social protection provisions including food, parenting support and HIV support groups were found to have the potential to improve adolescent adherence. Combinations of ‘cash, care and clinic’ social protections were also noted as an essential tool in increasing adolescent treatment equity, HIV-survival and prevention.
Equity in adherence to antiretroviral therapy among economically-vulnerable adolescents living with HIV in Uganda
Bermudez et al.
Topic/Key Words: ART-adherence; Economic and social inequities
Geographic Region: Uganda
The Research Need: In order for antiretroviral therapy (ART) to be effective, there must be a commitment to adhere to a complex drug regimen and schedule, such as when and how often to take the various drugs. This is one of the first studies to address the question of social and economic equity in adherence to antiretroviral therapy among economically vulnerable youth with HIV.
The Findings: This study examined the extent to which individual and composite measures of equity predict self-reported adherence among Ugandan adolescents. Analysis indicated that adolescents with greater economic advantage in ownership of household assets, financial savings, and caregiver employment had higher odds of adherence. These findings suggest that interventions addressing economic and social inequities may be beneficial to increase ART uptake among economically vulnerable youth, especially in sub-Saharan Africa.
Social support as a protective factor for children impacted by HIV/AIDS across varying living environments in southern Africa
Smith et al.
Topic/Key Words: HIV; AIDS; orphans; caregiver; psychological well-being; social support
Geographic Region: Southern Africa
The Research Need: A population of children in Africa have had a parent or family member die from HIV/AIDS. The study examined 100 orphaned and/or vulnerable children from a small targeted population who received varying levels of support from a private not-for-profit organization. This study was done to determine if increased social support would also promote increased well-being in these children.
The Findings: Children with access to trusted adults were much more likely to share their feelings and had lower incidence of hunger, suicide ideation and witnessing violence. An important component to decrease levels of anxiety and depression in this vulnerable population is providing access to trusted individuals. As a result, social institutions (e.g., government and child welfare) need to support and mentor this group who may not have adult role models to support and mentor them into adulthood. Trusting relationships are key to healthy psychological recovery and children need to have an outlet to share their unhappy feelings.
Do not forget the boys – gender differences in children living in high HIV-affected communities in South Africa and Malawi in a longitudinal, community-based study
Sherr et al.
Population: Young children (ages 4-13)
Topic/Key Words: Gender; HIV/AIDS; children; community; education; violence
Geographic Region: South Africa and Malawi
The Research Need: Gender is an important factor in child development. In sub-Saharan Africa, girls have less access to education and are more likely to carry out household duties compared to boys. The consequence of this has been that programmes addressing child development are often aimed at girls in order to (rightly) redress gender imbalances or disparities. The specific aim of the study was to provide an understanding of gender effects on young children (aged 4–13 years) in relation to health, education, parenting, mental health and psychological parameters.
The Findings: The data suggests that, perhaps due to the narrow approach focusing on providing information for girls, boys may be overlooked. As a result, despite many similarities of outcome, there are some specific experiences where boys are generally worse off. These differences have distinct consequences for the educational and emotional development of boys. A broader, more equitable approach to child development might be warranted to ensure that the needs of both girls and boys are considered, and in the attempt to enhance provision for girls, boys are not overlooked.
The power of siblings and caregivers: under-explored types of social support among children affected by HIV and AIDS
Sharer et al.
Population: Children (ages 10-20)
Topic/Key Words: Children; HIV; family; mental health; social support
Geographic Region: South Africa
The Research Need: Children affected by HIV and AIDS have significantly higher rates of mental health problems than unaffected children. Therefore, there is a need for research to examine how social support helps children in high HIV-prevalence settings such as South Africa. The purpose of this research was to explore how family social support relates to depression, anxiety, and post-traumatic stress (PTS).
The Findings: Overall, caregiver and sibling support helped with depression, anxiety and PTS. The results reinforced that family strengthening should target both caregiver and sibling relationships. Additionally, the findings strongly indicated the need for regular mental health assessment and follow-on support for all children affected by the HIV epidemic. Establishing universal mental health screenings for all children living in high HIV-prevalence settings should be prioritized.
Exploring the potential of a family-based prevention intervention to reduce alcohol use and violence within HIV-affected families in Rwanda
Betancourt et al.
Topic/Key Words: Children affected by HIV/AIDS; resilience; IPV; alcohol; Rwanda; family-based prevention
Geographic Region: Rwanda
The Research Need: HIV-affected families report higher rates of harmful alcohol use, intimate partner violence (IPV) and family conflict, which can have detrimental effects on children. Few resources exist to address these complex issues in Sub-Saharan Africa. This study explores the potential of a family-based intervention resource to reduce IPV, family conflict and problems related to alcohol use to promote child mental health and family functioning within HIV-affected families in post-genocide Rwanda.
The Findings: The study assessed an existing family home-visiting program used with families affected by caregiver HIV in Rwanda. The goal of the program was to identify and enhance resilience and communication in families and promote mental health in children. This program showed qualitative reports of improved family functioning, lower levels of violence and problem drinking, as well as improved child mental health. This information supports the potential for additional family-based interventions to reduce specific adverse caregiver behaviors such as alcohol use and IPV and improve child well-being. Further studies are needed to explore the promise of family-based intervention for use in low- and middle-income countries.
What do we know about children living with HIV-infected or AIDS-ill adults in Sub-Saharan Africa? A systematic review of the literature
Goldberg et al.
Population: Children; HIV-infected adults
Topic/Key Words: Children; HIV/AIDS; adult HIV infection; adult AIDS illness; OVC
Geographic Region: Sub-Saharan Africa
The Research Need: Millions of children in Sub-Saharan Africa live with adults, often parents, who are HIV-infected or ill due to AIDS. These children experience social, emotional, and health vulnerabilities that overlap with, but are not necessarily the same as, those of orphans or other vulnerable children. Despite their distinctive vulnerabilities, research aimed at understanding the situation of these children has been limited until very recently.
The Findings: This research review of 47 articles confirms that the population of children living with HIV-infected or AIDS-sick adults is substantial in size, and that the vulnerabilities they experience are complex, spanning physical and emotional health and schooling. Some evidence is provided that infants, adolescents, children with infected or ill mothers, and children living with severely ill adults are particularly vulnerable. Additional, specific research and more nuanced understanding of the short- and long-term effects of adult HIV on children’s needs and circumstances will be important to ongoing discussions about equity in policies and interventions.
Caregiver supportive policies to improve child outcomes in the wake of the HIV/AIDS epidemic: An analysis of the gap between what is needed and what is available
Kidman et al.
Population: Caregivers, families
Topic/Key Words: HIV-affected children; caregiving; social policy
Geographic Region: 25 Sub-Saharan African countries
The Research Need: In the wake of the HIV/AIDS epidemic, caregivers are struggling to support HIV-affected children. For reasons of equity and efficiency, their needs can be best met through strong social protections and policies. This paper presents a conceptual framework to help address the needs of HIV-affected caregivers and to prioritize policies in 25 sub-Saharan African countries.
The Findings: First, this paper analyzed common needs across diverse caregiving populations, and the needs, which are intensified or unique to providing care to HIV-affected children. The paper then explored social policies that would facilitate meeting these needs. These policies fell into six categories: economic security, work-family balance, access to education, access to healthcare, equal rights & discrimination and expanding social services. Lastly, the paper reviewed the availability of these policies in 25 highly affected countries in sub-Saharan Africa. Although some coverage was found, there are significant gaps in areas critical to family economic security and healthy child development. Filling these policy gaps, as well as making mental health and social services more widely available, is essential to support caregiving by families for HIV-affected children.
Caregiver satisfaction with paediatric HIV treatment and care in Nigeria and equity implications for children living with HIV
Chamla et al.
Population: Caregivers of HIV-infected children
Topic/Key Words: Caregiver; satisfaction; paediatric HIV; equity
Geographic Region: Nigeria
The Research Need: It is more likely that caregivers will seek healthcare for children living with HIV if they have positive experiences with the level of care the children are receiving. This study measured dimensions of caregiver satisfaction with paediatric HIV treatment in Nigeria, and studied its implications for equity by conducting facility-based exit interviews for caregivers of children receiving antiretroviral therapy.
The Findings: Of 1550 caregivers interviewed, 63% reported being very satisfied overall; however, satisfaction varied in some dimensions. Only 55.6% of caregivers could talk privately with health workers, 56.9% reported that lines to see health workers were too long, and 89.9% said that some health workers did not treat patients living with HIV with sufficient respect. Based on this information, two underlying factors, labeled Availability and Attitude, were identified. The study concludes that high levels of overall satisfaction among caregivers masked dissatisfaction with some aspects of services. However, the two underlying satisfaction factors need to be addressed in order to close equity gaps in access to HIV treatment between adults and children, and across socio-economic groups.
The relationships between HIV stigma, emotional status, and emotional regulation among HIV-affected children in rural China
Wei et al.
Population: Children (ages 6-17)
Topic/Key Words: HIV stigma; emotional status; emotional regulation; age
Geographic Region: China
The Research Need: Children affected by HIV/AIDS have unique psychosocial needs that often go unaddressed in traditional treatment approaches. Previous studies have identified a link between HIV stigma and the subsequent emotional status of children affected by HIV/AIDS. However, limited data are available regarding protective psychological factors that can mitigate the effects of HIV stigma and thus promote resilience for this vulnerable population.
The Findings: This study used data from children affected by parental HIV in rural central China. It aimed to examine the linkage between actual and perceived HIV stigma and emotional status among HIV-affected children. It found that the experience of HIV stigma was directly correlated to negative emotions among children affected by HIV, but that children who could regulate their emotions were less affected. Results suggest that children affected by HIV may benefit from being taught to regulate their emotions. Health professionals should be aware of the link between stigma and negative emotion in childhood and adolescence.
Child-street migration among HIV-affected families in Kenya: a mediation analysis from cross-sectional data
Goodman et al.
Population: Children, families
Topic/Key Words: Street-involved children; street migration; social support; HIV; Kenya
Geographic Region: Kenya
The Research Need: HIV has left an estimated 15 million children orphaned, and even when not orphaned, AIDS-affected children face staggering challenges. This study explores whether children in Kenya born into HIV-affected households are more likely to migrate to the streets than other children. Further, the study seeks to identify potential factors that may decrease risks posed to children living in HIV-affected households.
The Findings: The study interviewed a random community sample of caregiving women in Meru County, Kenya. Overall, the study found a small positive-graded association between the number of partners living with HIV and the probability that a child lives on the street. Although street migration of children was strongly associated with household HIV, the small percentage of those affected points to a greater need to focus on interactions between household and community factors. These include coordinating care between clinical providers, social service providers and schools.