Quality of life among Ghanaian adolescents living with perinatally acquired HIV: a mixed methods study

In Sub-Saharan Africa, increasing numbers of children with perinatally acquired HIV (PAHIV) are living into adolescence. These adolescents face numerous unique challenges such as parent illness/death and years of medication use. Optimizing care for these youth requires an understanding of the factors that contribute to physical health, psychological well-being, social relationships, and quality of life (QOL). This mixed methods study collected quantitative questionnaire data from 40 Ghanaian adolescents with PAHIV (50% female, 12–19 years old) who received care through an adolescent HIV clinic in Kumasi, Ghana. The study also presents results from qualitative interviews conducted with 20 adolescents. Results from quantitative analyses suggested that a significant number of participants were not virally suppressed (67%) and participants reported barriers to treatment adherence, limited social support, concerns about disclosure and HIV-related stigma, limited resources, and lower than expected QOL. Salient themes from the qualitative analyses included limited understanding of how HIV is transmitted, the interplay between food insecurity and treatment adherence and the need for developing safe relationships through which adolescents can discuss their illness without fear of accidental disclosure of their HIV status.     

Disclosure of the diagnosis of HIV/AIDS to children born of HIV-infected mothers

HIV disease in perinatally infected patients is now treated as a chronic illness of childhood. The effective use of highly active anti-retroviral therapy has contributed to the improvements in the prognosis of this illness. As this population matures, the issue of disclosure of diagnosis becomes more significant and part of their comprehensive medical care. The importance of disclosure relates directly to medication adherence, treatment compliance, sexual exploration, fears associated with premature death, and the child's developing autonomy. disclosure of HIV disease to an infected child poses complex issues, such as transmissibility, maternal guilt, more than one family member with the virus, and the potential for social stigma and isolation, among others. A change in perspectives is currently taking place regarding the process of disclosure, whereby it may be approached as a gradual discussion process over the life of the child. A method of gradual and partial disclosure to the child with consistent support by a multi-disciplinary team of providers has been a successful strategy for many children cared for at the New York Hospital-Cornell University Medical Center. Of 73 perinatally HIV-infected children who are 6 years of age or older, 41% have had complete disclosure and another 19% are partially disclosed. Continuous communication and negotiation among the members of the team, which includes the parents and caregivers, are vital to the gradual process leading to complete disclosure.     

Redefining treatment: how biological mothers manage their children's treatment for perinatally acquired HIV

Current medical thinking supports early initiation of aggressive approaches to the management of perinatally acquired HIV infection. Biological mothers, however, may not endorse this way of managing their child's condition. For this study, grounded theory methods were used to conduct secondary analysis of eight semi-structured in-depth interviews with parents of children with perinatally acquired HIV. Biological mothers' perspectives on their children's treatment for perinatally acquired HIV infection, the strategies they used to manage their children's treatment and sociocultural influences on mothers' beliefs and actions are explored and described. Creation of a framework that may be useful for future research and recommendations for clinical practice are offered.     

“Just take your medicine and everything will be fine”: Responsibilisation narratives in accounts of transitioning young people with HIV into adult care services in Australia

Young people who have grown up with perinatally acquired HIV in wealthy nations are increasingly transitioning into adult care settings which expect more independence and self-regulation than paediatric care. Drawing on the first qualitative study on growing up with HIV in Australia, this paper examines “responsibilisation” narratives in semi-structured interviews conducted with young people with HIV and their paediatric and adult care providers. Three dominant narratives were identified: responsibilisation as imperative, practice and contest. This suggests that while young people growing up with HIV in an advanced liberal setting such as Australia may value the independence of adult care, and appreciate the need to take responsibility for their health, the practices involved in becoming a responsible health citizen are shaped by individual histories and circumstances, and in some cases, can lead to serious contestation and conflict with care providers. Placing a stronger emphasis on what young people can gain from taking an active role in managing their health may more successfully foster responsibilisation, rather than focusing on what they will lose. Clinicians could benefit from greater support regarding how to engage young people with the elements of responsibilisation likely to resonate more meaningfully at different points in their lives.     

Treatment outcomes in HIV-infected adolescents attending a community-based antiretroviral therapy clinic in South Africa

Background  

Very few data are available on treatment outcomes of adolescents living with HIV infection (whether perinatally acquired or sexually acquired) in sub-Saharan Africa. The present study therefore compared the treatment outcomes in adolescents with those of young adults at a public sector community-based ART programme in Cape Town, South Africa.     

Provider perceptions of stigma and discrimination experienced by adolescents and young adults with pHiV while accessing sexual and reproductive health care

Historically, children with perinatally-acquired HIV (PHIV) were viewed as the “innocent victims” as their HIV infection was not acquired through sexual/drug related means. Today, adolescents with PHIV are surviving into young adulthood and are engaging in developmentally expected behaviors such as establishing intimate, sexual relationships. Like other youth, those living with PHIV often need to access sexual and reproductive health (SRH) services. Previous research has documented stigma and discrimination experienced by adult women living with HIV as they try to access SRH care. However, little is known about the experiences of stigma and discrimination encountered by the maturing adolescents and young adults (AYA) with PHIV when accessing services. HIV health care providers (HHCPs) who frequently care for this population are in a unique position to learn about and understand the stigma and discrimination experienced by their patients in formal service settings. HHCPs (n?=?57, 28 medical and 29 social service providers) were recruited using snowball sampling, and completed an online survey based on patient-shared experiences of stigma and discrimination when accessing SRH-related health care and social services. Thirty-eight percent (22/57) of providers reported that their patients with PHIV had shared encounters of stigma or discrimination when accessing SRH services. Coded open-ended provider comments indicated that AYA patients experienced challenges with providers who were unfamiliar with PHIV and expressed surprise that someone with PHIV was still alive. Analyses also revealed prejudicial attitudes towards women with HIV. Patients reported being counseled to terminate their pregnancy and lectured about their “poor choices.” As AYA with PHIV transition out of pediatric and adolescent care, it is important for providers to simultaneously help them navigate care in other health settings, as well as educate adult health care providers about possible misconceptions of caring for individuals with PHIV.     

Behaviorally and perinatally HIV-infected young women: targets for preconception counseling

This study aimed to describe demographic and psychological characteristics among HIV-infected young women, and to identify knowledge, attitudes, and behaviors associated with conception, with the goal of informing interventions or programmatic decisions regarding preconception counseling methods for young women living with HIV. Behaviorally and perinatally HIV-infected young women (n?=?34) were conveniently sampled in Miami, Florida. Participants were asked to complete measures of reproductive knowledge, attitudes toward conception, and risk behaviors, as well as measures of depression and cognitive functioning. Perinatally and behaviorally HIV-infected young women were very similar in important areas of health preconception practices such as conception-related health literacy and conception-related communication with providers. Behaviorally infected women, however, were somewhat more likely to have been pregnant in the past, and had greater knowledge of healthy contraception practices and family planning. Despite the difference among groups, both the perinatally and behaviorally acquired women demonstrated having adequate overall knowledge. Depression was higher and consistent with moderate depression among the behaviorally HIV-infected women in comparison to perinatally infected women. This study found that that despite adequate reproductive knowledge, most young HIV-infected women were not using contraception. Given the consequences of presentation of advanced HIV during pregnancy, the need for both treatment adherence and preconception counseling is essential. Results suggest that interventions or programmatic decisions regarding preconception counseling methods for young women living with HIV are necessary and potentially transferrable between populations.     

Perinatal HIV: special considerations

The percentage of AIDS cases among women--particularly women of color--in the United States is increasing yearly. Despite this increase, there has been a relatively steady decline in the number of AIDS cases occurring perinatally. Regardless of the reasons HIV-infected couples choose to become pregnant, studies indicate that providing support, such as contraceptive counseling and assisted reproduction techniques, can improve the health outcome in the face of HIV-related challenges. Issues specific to antiretroviral therapy, including viral resistance, pregnancy outcomes, and adverse fetal effects, complicate the treatment of perinatal HIV. Postpartum case is yet another area that requires special consideration when supporting HIV-infected parents and children. The growing body of data on pregnancy and HIV may indicate a rising commitment to research of and support for the unique challenges HIV-infected families face. This article was adapted from an IAS-USA interactive case-based program, Cases on the Web, in November 2003.     

Bone mineral metabolism in pediatric inflammatory bowel disease.

The development of reliable techniques to measure bone densitometry and evolving effective drug treatment have kindled great interest in the diagnosis and treatment of osteoporosis in adults with inflammatory bowel disease. A number of studies have examined the prevalence of abnormal bone mineral metabolism in children and adolescents. Studies, conducted over the past decade, indicate a greater likelihood of clinically significant problems in Crohn's disease than in ulcerative colitis. Corticosteroids have been proven to impair bone mineral status. It is increasingly clear that inflammation and other factors play a bigger role than malabsorbtion of minerals or vitamin D in most patients. As the use of the bisphonate class of drugs is limited in pediatric patients, there is a need to emphasize the role of diet and exercise in children and teenagers, particularly in those affected by inflammatory bowel disease.     

"It's like losing a part of my family": transition expectations of adolescents living with perinatally acquired HIV and their guardians

The increased life expectancy of perinatally HIV-infected adolescents necessitates the transition from pediatric to adult infectious disease care. Significant differences exist between pediatric and adult HIV clinic models, and adequate preparation is critical for successful transition. The expectations of youth on the cusp of this transition and their guardians have not previously been explored. Semistructured interviews were conducted with 40 perinatally infected adolescents (mean age, 17.3 years; 90% African American; 57.5% female; 57.5% in high school) currently receiving care in a pediatric infectious disease clinic in the southeast United States and 17 guardians about their expectations related to the pending transition to adult care. Interviews were transcribed and coded for emergent themes. Many adolescents had difficulty articulating expectations of their transition to an adult clinic, reporting they did not know what to expect. Others looked forward to increased responsibility and control, while some expressed concerns over leaving their current providers and having to establish new relationships. Most guardians viewed the transition to adult care as a tool to facilitate maturity. Several indicated they had not discussed transition with their child and were waiting for their child to initiate a conversation about it. Given the importance providers place on preparing youth for transition, it is surprising that many adolescents had no expectations about this impending change. This indicates a need for improved communication between providers and adolescents to enhance preparation and ultimately transition success. Additionally, guardians play an important role in the transition process and may need support to discuss this process with their child.     

HIV in adolescents

Adolescence is a time of dramatic physical, emotional, cognitive, and social change that brings new vulnerabilities. Youth represent half of all new HIV infections in the United States and the rest of the world. The number of newly infected adolescents who acquire the disease behaviorally and the number of perinatally infected children surviving into adolescence have both contributed to this growth. This article reviews the most recent epidemiology of HIV/AIDS in adolescents, gives guidance on clinical practice, including medical and psychosocial care, and examines prevention issues, including counseling and testing, which are needed to make programs effective for youth.     

Use of multisystemic therapy to improve antiretroviral adherence and health outcomes in HIV-infected pediatric patients: evaluation of a pilot program

The purpose of the current study was to evaluate a clinical program that used multisystemic therapy (MST) to improve regimen adherence and health outcomes among children with perinatally acquired HIV who exhibited high viral loads in the absence of viral resistance. MST is an intensive, home-based family therapy previously used for the treatment of serious antisocial behavior. Goals of the study were to assess the feasibility of the MST program and its effectiveness for improving health outcomes among children who were treated. The study was conducted by retrospective chart review. Ninety percent of children and families referred to the program accepted the referral and 95% received a full dose of treatment, suggesting high program feasibility. Nineteen children participated in the program. General HIV knowledge on the part of caregivers improved significantly over the course of treatment. Although caregiver-reported adherence did not change, viral loads were found to significantly decrease from referral to the end of MST treatment, with the mean change reflecting a greater than 1 log10 decrease. The majority of children maintained these improvements during the 3 months after treatment termination. Results suggest that MST holds promise as an intervention for improving health outcomes among pediatric patients with HIV.     

Prevalence and Predictors of Drug Use Among Adolescents with HIV Infection Acquired Perinatally or Later in Life

We examined the prevalence and predictors of drug use among a diverse group of adolescents living with HIV infection acquired perinatally or through sexual risk behaviors (“behaviorally acquired”). Adolescents ages 13–21 (n = 166) who were receiving care at one of five pediatric/adolescent HIV clinics in three US cities (Baltimore MD, Washington DC, and New York NY) and were enrolled in a behavioral intervention were interviewed at baseline regarding lifetime drug use experiences and depression symptoms. A majority of study participants reported using alcohol (57.2%) and marijuana (51.2%); 48.8% reported tobacco/cigarette use. The mean age of onset of use for each type of drug was 14 years or younger. A larger proportion of participants with behaviorally acquired HIV than adolescents with perinatally acquired HIV reported lifetime use of alcohol (76.1 vs. 44.4%), marijuana (73.1 vs. 36.4%), tobacco (70.2 vs. 34.3%), and club drugs (22.4 vs. 3%) (all p < 0.001).     

Transfer is not a transition – voices of Jamaican adolescents with HIV and their health care providers

Increasing access to antiretroviral therapy in resource-limited settings (RLS) has resulted in the survival of perinatally HIV-infected children into adulthood. We characterized the transition process from pediatric to adult care by conducting semi-structured interviews of HIV-infected adolescents and health care providers in Jamaica. Using an inductive content analytic approach, four themes emerged: (1) Transition should be holistic and a process; (2) Pediatric clinics were like families; (3) Rootedness in the pediatric clinic; and (4) Need for adolescent-centered services to bridge the gap between pediatric and adult-centered services. Adolescent informed- and centered-transition approach may result in better outcomes for HIV-infected adolescents.     

Community beliefs,HIV stigma,and depression among adolescents living with HIV in rural Uganda

The availability of and increased access to antiretroviral therapy (ART) has significantly reduced the morbidity and mortality associated with HIV. As a result, perinatally infected youth are increasingly able to reach adolescence. There is limited information about the psychosocial challenges facing adolescents living with HIV (ALWH) in rural settings of sub-Saharan Africa. We sought to understand psychosocial challenges facing ALWH in rural Uganda and their effects on mental health and HIV treatment outcomes. We conducted 5 focus group discussions and 40 one-on-one in-depth interviews in Mbarara, Uganda with adolescents (aged 13–17 years) and adult women caregivers. All interviews were audio-recorded, transcribed directly into English, and coded using thematic analysis to identify themes related to psychosocial adversities and mental health. Adversities faced by adolescents included negative community perceptions (perceived aggression, presumed early mortality), HIV stigma (enacted and internalized), vulnerability factors (loss of parents, poverty), and health challenges (depression, ART non-adherence). In the conceptual model that emerged from the findings, negative community perceptions (about perceived aggression or presumed early mortality) predisposed ALWH to experience enactments and internalization of stigma that led to depression and ART non-adherence. The data also identified several protective factors, including counselling, family and religious support, and timely serostatus disclosure. Interventions to correct community misperceptions about HIV can potentially reduce stigma and thereby improve physical and mental health outcomes of ALWH.     

Survival of HIV-1 and HIV-2 perinatally infected children in The Gambia

BACKGROUND: The risk of mother-to-child transmission (MTCT) of HIV-2 is much lower than that of HIV-1, but the long-term prognosis of perinatally infected HIV-2 children is unknown. We re-visited children who were part of a large MTCT study in The Gambia (conducted during 1993-1997), in order to compare the long-term survival of children perinatally infected with HIV-2 with that of seronegative and of HIV-1 infected children. METHODS: Five to eight years' follow-up of a cohort of children born to HIV-negative, HIV-1 positive, and HIV-2 positive mothers. RESULTS: Seven hundred and seventy-four children were followed up for a median of 6.6 years. Of 17 perinatally HIV-1 infected children, three were still alive on 1 July 2001, two had been lost to follow-up, and 12 had died. The median survival was 2.5 years. Of eight HIV-2 infected children five were still alive, none were lost to follow-up and three had died. The mortality hazards ratio of both HIV-1 [9.9; 95% confidence interval (CI), 5.2-19], and of HIV-2 infected children (3.9; CI, 1.2-12) was significantly increased compared with children of seronegative mothers. The mortality hazards ratio of HIV uninfected children of HIV-1 or HIV-2 infected mothers was not significantly increased compared to that of children of seronegative mothers (P = 0.17 and P = 0.5 respectively). CONCLUSIONS: Children with perinatally acquired HIV-2 infection have a higher mortality than children of seronegative mothers. Guidelines for treatment of HIV-1 infected children should be used for treatment of HIV-2 infected children.     

Heterosexual transmission of human immunodeficiency virus infection - Strategies for prevention

In Canada, over 90% of the acquired immune deficiency syndrome cases diagnosed so far have been acquired sexually, with an increasing proportion made up of heterosexual contacts of high risk individuals. In multiple studies, the transmission rate among steady heterosexual partners of infected individuals has been variable. It is likely that complex biological and epidemiological interactions exist between human immunodeficiency virus (HIV) and sexually transmitted diseases with respect to transmission and disease. Other important determinants in transmission of infection may relate to the virus itself. The importance of sexual practices other than vaginal intercourse (such as anal intercourse) in the heterosexual transmission of HIV has not been well studied. The major approach to the control of HIV-associated disease remains the control of primary infection. Sexual practices which are the major epidemiological determinants of HIV transmission can be successfully modified by appropriate educational interventions. The promotion of condom use must form a special part of these interventions. Results of ongoing trials should be available prior to the formulation of recommendations for the use of spermicides. Targeted education programs may allow us to make better use of our resources in a more efficient way. In Canada, groups that could be reached by such programs include: prostitutes and their clients; men and women attending sexually transmitted disease clinics; sexually active women attending family planning clinics; and children and adolescents who are becoming sexually active.     

Growing up in a world with AIDS: social advantages of having AIDS in Brazil

Could HIV/AIDS become a positive factor for a child's life? This contradiction is explored in this paper based on anthropological fieldwork and research in Brazil. I used participant observation and informal interviewing both with children living with HIV/AIDS and uninfected street children to obtain qualitative data. Brazil is known as a country leader in social responses towards the AIDS epidemic. Not only has access to antiretroviral medications been assured, but also a series of help networks guarantee that the human rights of HIV-infected people be respected. Children and adolescents benefit equally from these social gains. As such, many children born to HIV-positive women have reached adolescence and have 'normal' lives. This article explores the life experiences of children and adolescents infected by HIV and compares them to the life experiences of street children. Even though the AIDS epidemic is linked to death, infected children and adolescents dream about their lives and futures. Contradictorily, street children, who have not acquired the virus and are considered healthy from a biological stand point, have no prospective plans and answer without hope to questions about the future.