Caregiver HIV Status Research Articles

A cross-sectional study on caregivers\u2019 perspective of the quality of life and adherence of paediatric HIV patients to highly active antiretroviral therapy

BackgroundPoor compliance to highly active antiretroviral therapy (HAART) can result in the poor quality of life in children living with Human immunodeficiency virus/Acquired immunodeficiency syndrome (HIV/AIDS) because of low plasma drug concentration and the possibility of drug resistance. This study evaluates the response of caregivers for determination of adherence and the four quality of life domains in children (aged 14 years and under) on HAART.MethodsWe conducted a cross-sectional study of 188 children, each accompanied by their caregivers at Ola During Children’s Hospital and Makeni Government Hospital between September and November 2016. Adherence to HAART and Quality of life was assessed using the WHO Quality of life summary questionnaire (WHOQOL-BREF). We obtained ethical approval from the Sierra Leone Ethics and Scientific Review Committee.ResultsThe study revealed 5.9% adherence amongst paediatric patients, and a strong association of adherent patients(p = 0.019*) to the physical health domain (mean = 64.61 SD = 8.1). Caregiver HIV status showed a strong association with the physical (mean = 58.3, SD = 11.7 and p = 0.024*), and psychological health domains (mean = 68.2, SD = 14.7 and p = 0.001). Caregiver type (mother/father/sibling) accompanying child to hospital also showed strong associated with the physical (mean = 58.0, SD = 10.6, p < 0.001), psychological (mean 68.2 SD = 14.81 p < 0.001) and environmental health domains (mean = 59.7, SD = 13.47, p < 0.001). Further regression analysis showed a strong association with physical health domain for HIV positive caregivers (p = 0.014) and adherent paediatric patients (p = 0.005). Nuclear family also showed a strong association with psychological (p < 0.001) and environmental (p = 0.001) health domains.ConclusionThis study showed a strong association between the quality of life domains and the involvement of nuclear family caregiver, HIV-positive caregiver and adherence to HAART. Our study suggests that the involvement of any member of the nuclear family, HIV positive parents and patient adherence to therapy can improve the quality of life of paediatric HIV/AIDS patients on highly active antiretroviral therapy in the two hospitals.

Understanding the association between caregiver sex and HIV infection among orphans and vulnerable children in Tanzania: learning from the USAID Kizazi Kipya project

BackgroundTanzania has met only 50.1% of the 90% target for diagnosing HIV in children. The country’s pediatric case finding strategy uses global best practices of index testing, provider-initiated counselling and testing, and targeted community testing of at-risk populations to find about 50,000 children living with HIV (CLHIV) who are undiagnosed. However, context-specific strategies are necessary to find the hidden children to meet the full 90% target. This study assesses whether sex of the caregiver is associated with HIV status of orphans and vulnerable children (OVC) as a valuable strategy for enhanced pediatric case findings.MethodsData originate from the community-based, United States Agency for International Development (USAID)-funded Kizazi Kipya Project, which works towards increasing OVC’s and their caregivers’ uptake of HIV/AIDS and other health and social services in Tanzania. Included in this study are 39,578 OVC ages 0–19 years who the project enrolled during January through March 2017 in 18 regions of Tanzania and who voluntarily reported their HIV status. Data analysis involved multi-level logistic regression, with OVC HIV status as the outcome of interest and caregiver’s sex as the main independent variable.ResultsThree-quarters (74.3%) of the OVC included in the study had female caregivers, and their overall HIV prevalence was 7.1%. The prevalence was significantly higher (p < 0.001) among OVC with male caregivers (7.8%) than among OVC with female caregivers (6.8%), and indeed, multivariate analysis showed that OVC with male caregivers were significantly 40% more likely to be HIV-positive than those with female caregivers (OR = 1.40, 95% CI 1.08–1.83). This effect was the strongest among 0–4 year-olds (OR = 4.02, 95% CI 1.61–10.03), declined to 1.72 among 5–9 year-olds (OR = 1.72, 95% CI 1.02–2.93), and lost significance for children over age 9 years. Other significant factors included OVC age and nutritional status; caregiver HIV status and marital status; household health insurance status, and family size; and rural versus urban residence.ConclusionsOVC in Tanzania with male caregivers have a 40% higher likelihood of being HIV-positive than those with female caregivers. HIV risk assessment activities should target OVC with male caregivers, as well as OVC who have malnutrition, HIV-positive caregivers, or caregivers who do not disclose their HIV status to community volunteers. Further, younger HIV-positive OVC are more likely to live in rural areas, while older HIV-positive OVC are more likely to live in urban areas. These factors should be integrated in HIV risk assessment algorithms to enhance HIV testing yields and pediatric case-finding in the OVC population in Tanzania.

Brief Report: Disclosure, Consent, Opportunity Costs, and Inaccurate Risk Assessment Deter Pediatric HIV Testing: A Mixed-Methods Study.

Prompt child HIV testing and treatment is critical; however, children are often not diagnosed until symptomatic. Understanding factors that influence pediatric HIV testing can inform strategies to increase testing. A mixed-methods study was conducted at a tertiary hospital in Nairobi, Kenya. Three focus group discussions with health care workers (HCWs) and 18 in-depth interviews with HIV-infected adults with children of unknown status were analyzed using thematic analysis. A structured questionnaire was administered to 116 HIV-infected caregivers of children of unknown status to triangulate qualitative findings. Analysis revealed 3 key periods of the pediatric HIV testing process: decision to test, test visit, and posttest. Key issues included: decision to test: inaccurate HIV risk perception for children, challenges with paternal consent, lack of caregiver HIV status disclosure to partners or older children; test experience: poor understanding of child consent/assent and disclosure guidelines, perceived costs of testing and care, school schedules, HCW discomfort with pediatric HIV testing; and posttest: pessimism regarding HIV-infected children's prognosis, caregiver concerns about their own emotional health if their child is positive, and challenges communicating about HIV with children. Concerns about all 3 periods influenced child testing decisions. In addition, 3 challenges were unique to pediatric HIV: inaccurate HIV risk perception for children; disclosure, consent, and permission; and costs and scheduling. Pediatric HIV testing barriers are distinct from adult barriers. Uptake of pediatric HIV testing may be enhanced by interventions to address misconceptions, disclosure services, psychosocial support addressing concerns unique to pediatric testing, child-focused HCW training, and alternative clinic hours.

Over-age and underserved: a case control study of HIV-affected children and education in Rwanda

ABSTRACTChildren living with and affected by HIV are at risk of poverty and mental health problems that can interfere with educational attainment. This review is a secondary analysis of educational attainment within a case-controlled study of children 10–17 years of age who were HIV-positive, HIV-affected by caregiver HIV status or by HIV in their family and HIV-unaffected in rural Rwanda. We evaluated caregiver and child-reported HIV-related stigma, anxiety/depression, conduct problems and social support and any likely associations with children being overage for their current grade in school. Overall, 90.4% of children were enrolled in school; however, 83.8% were overage for their current grade, with higher rates of overage for grade among HIV-positive and HIV-affected children. Interventions and policies that recognize and promote social support within education to address challenges of conduct problems among youth may help counteract the high rates of grade repetition among children in rural Rwanda.

HIV Status Disclosure through Family-Based Intervention Supports Parenting and Child Mental Health in Rwanda.

Few evidence-based interventions exist to support parenting and child mental health during the process of caregiver HIV status disclosure in sub-Saharan Africa. A secondary analysis of a randomized-controlled trial was conducted to examine the role of family-based intervention versus usual social work care (care as usual) in supporting HIV status disclosure within families in Rwanda. Approximately 40 households were randomized to family-based intervention and 40 households to care as usual. Parenting, family unity, and child mental health during the process of disclosure were studied using quantitative and qualitative research methods. Many of the families had at least one caregiver who had not disclosed their HIV status at baseline. Immediately post-intervention, children reported lower parenting and family unity scores compared with those in the usual-care group. These changes resolved at 3-month follow-up. Qualitative reports from clinical counselor intervention sessions described supported parenting during disclosure. Overall findings suggest adjustments in parenting, family unity, and trust surrounding the disclosure process. Family-based intervention may support parenting and promote child mental health during adjustment to caregiver HIV status disclosure. Further investigation is required to examine the role of family-based intervention in supporting parenting and promoting child mental health in HIV status disclosure.

Cross Sectional Characterization of Factors Associated with Pediatric HIV Status Disclosure in Southern Ethiopia.

BackgroundDisclosure of HIV positive status to children and adolescents is a complex process. However, disclosure has been found to be associated with improved outcomes. The objective of the current study was to identify the predictors that facilitate disclosure of HIV status to children and adolescents and to study the reasons for non-disclosure.MethodsInterviews of caregivers and reviews of records were done to collect data on caregiver and child information and details regarding the disclosure status of children. Bivariate analysis was done to test the association between HIV status disclosure and different caregiver and child factors. To identify the independent predictors of disclosure, we did multivariable logistic regression.ResultsA total of 177 children attending an HIV clinic were included. The mean age of the participants was 10.1 years (SD = 2.8), and about half (50.8%) were female. Most caregivers, 137 (77.8%) stated that disclosure of HIV status to children is important and should be done. However, disclosure had only been made to 59 (33.3%) of the participants. Child age more than 10 years [AOR = 6.7; 95%CI: 1.73–26.01], duration of HIV diagnosis of 5 years or more [AOR = 4.4; 95%CI: 1.26–15.06] and taking a zidovudin (AZT) based regimen [AOR = 3.5; 95%CI: 1.31–9.53] predicted HIV positive status disclosure. Additionally, length of treatment of caregivers of more than 14 years [AOR = 3.9; 95%CI: 1.07–14.61], disclosure of caregiver’s HIV status to children and/or others [AOR = 4.7; 95%CI: 1.19–18.74], and the child’s inquiry about their condition [AOR = 4.5; 95%CI: 1.16–17.43] increased the odds of disclosure.ConclusionThe rate of disclosure among HIV infected children in southern Ethiopia is low. Primarily time-based factors were associated with the probability of HIV positive status disclosure and a specific regimen which has not been found previously. Further qualitative research may elucidate more on these factors; educational strategies may address some of these determinants.

A Prospective Study of the Onset of Sexual Behavior and Sexual Risk in Youth Perinatally Infected with HIV

Perinatally HIV-infected (PHIV+) youth are surviving into adolescence and young adulthood. Understanding the sexual development of PHIV+ youth is vital to providing them with developmentally appropriate HIV-prevention programs. Using pooled data (N = 417) from two longitudinal studies focused on HIV among youth (51% female; 39% HIV+) and their caregivers (92% female; 46% HIV+), the rate of sexual onset during adolescence across four youth–caregiver combinations was compared: PHIV+ youth with HIV+caregivers (12%), PHIV+ youth with HIV– caregivers (27%), HIV– youth with HIV+caregivers (34%), and HIV– youth with HIV– caregivers (27%). Youth with HIV– caregivers were more likely than other youth–caregiver groups to have had their sexual onset. Youth with HIV+ caregivers reported a slower rate of onset of penetrative sex across the adolescent years. Findings are discussed by highlighting the role that both youth and caregiver HIV status play in the onset of sexual behavior across adolescence.

Mental Health in Youth Infected with and Affected by HIV: The Role of Caregiver HIV

To examine the association of youth and caregiver HIV status, and other contextual and social regulation factors with youth mental health. Data were from two longitudinal studies of urban youth perinatally infected, affected, and unaffected by HIV (N = 545; 36% PHIV+ youth; 45.7% HIV+ caregivers). Youth mental health was measured using the Child Behavior Checklist, the Child Depression Inventory, and the State-Trait Anxiety Inventory for Children. HIV+ youth reported elevated scores on the CDI compared with HIV- youth. HIV+ caregivers reported fewer symptoms and were less likely to report scores in the clinical range for their children on the CBCL compared with HIV- caregivers. Caregiver mental health and parent-child communication and involvement were also associated with youth mental health. Youth who resided with HIV+ caregivers had better mental health. Future research needs to further explore the role of caregiver HIV infection in youth mental health. Understanding and building upon strengths of HIV-affected families may be an effective focus of interventions for this population.

Predictors of adherence to antiretroviral treatment and therapeutic success among children in South Africa

The recent years have shown an up-scaling of treatment programs for HIV-infected children in resource-limited settings, with an increased focus on adherence. Little is known, however, about the influence of socioeconomic as well as caregivers' health beliefs on both adherence and virologic outcome of pediatric antiretroviral treatment in these settings. We conducted a cross-sectional study with 57 caregiver–child dyads at a public hospital in Cape Town, South Africa. Adherence was electronically monitored over three months, viral loads were available pre- and post-study. Caregivers answered questionnaires on their socioeconomic situation, attitudes toward and knowledge about treatment, and quality of life. Young children with a mean age of 51 months (SD 25.6) were investigated, and all were cared for by female caregivers. Mean adherence was 81%, and 67% of children achieved virologic suppression (VS). Household income, educational status, and child characteristics were not significantly correlated with adherence. Disclosure of both the child's and the caregiver's HIV status was linked to achieving VS and was a significant predictor for VS. A model including child's health status, caregiver's language skills, caregiver's disclosure, and perceived stigmatization could explain 95% of the variance in VS. Adherence and VS were not associated with socioeconomic factors in this population. Social factors such as stigmatization, fear of disclosure, and caregivers' attitudes toward the health-care system influenced VS but not adherence.

The support needs of South African educators affected by HIV and AIDS

In a qualitative study of 77 South African educators, participants were asked to explain how they are affected by HIV and AIDS and how they would best like to be supported in response to this. The term ‘affected’ refers to educators who have colleagues, learners or loved ones who are HIV-positive or who have died from HIV-related illnesses, or those who teach children orphaned by AIDS or learners who are vulnerable because of a parent's or caregiver's HIV status. Their responses endorse current theory regarding support for educators in the context of the epidemic, but their needs for support also include forms of ‘ecosystemic compassion’: that is, a longing for the school management, learners' parents, learners, and colleagues to have compassion for their HIV-related predicaments. Because the latter need was pronounced among those educators caring for an ill HIV-positive loved one, this study introduces the importance of researchers' and stakeholders' sensitivity to the possibility of differentiated support, according to how educators are affected by HIV. Many of the participants' calls for support were at odds with policyfacilitated demands on educators to function as pillars of support to vulnerable learners and communities in the age of HIV and AIDS. The findings provide a caveat with regard to educators who require support—notwithstanding the expectation that they function as ecosystemic agents of support. Finally, the educators' calls for support should be tempered by resilience theory, which suggests that while it is important to support HIV-affected educators, the choice of supports should not stymie educators' agency or discourage educators' active participation in the support process.

Sources and Determinants of Social Support for Caregivers of Persons with AIDS

This study examines the determinants of social support among a sample of 642 caregivers of persons with AIDS living in San Francisco and Los Angeles. Respondents include both traditional family caregivers (mothers, spouses, other relatives) and non-traditional caregivers (friends, homosexual partners). Multiple regression analyses are conducted to assess the independent effects of six sets of variables on emotional and instrumental support: social-structural factors (age, education, employment status), caregiver's relationship to the person with AIDS, situational variables (caregiver's HIV status, patient's functional disability, interpersonal conflict), social network factors (contact with family, contact with friends, community integration), personal resources (mastery, caregiving competence), and use of formal community services (patient-directed services, caregiver-directed services). A number of factors and conditions appear to be relevant for caregiver support. For example, results indicate that network factors, including frequency of contact, conflict, and community integration, are importantly related to caregivers' perceptions of emotional support. There is also a trend suggesting lower emotional support among traditional family caregivers, relative to nonfamily caregivers, within gender categories. With respect to instrumental assistance with caregiving, factors that place greater demands and time constraints on caregivers, such as being employed and caring for an AIDS patient with greater functional limitations, appear to increase the level of informal instrumental support the caregiver receives. Partners and spouses, however, receive significantly lower instrumental assistance, independent of other factors. Implications of the findings are discussed.

The Impact of Children with HIV Infection on the Family System

The authors examined the effects of HIV infection on the family system as reported by 48 caregivers of HlV-exposed children. Respondents completed the Impact on Family Scale (IFS) as part of their participation in the study. Results showed that the psychological burden of the illness was significantly related to the child's HIV status; financial burden, social/familial Impact, and psychological burden of the Illness were significantly related to the caregiver's HIV status; psychological burden and social/familial impact differed as a function of the child's and caregiver's HIV status; and the Impact of HIV infection differed as a function of the caregiver relationship. Implications of the findings for service delivery are discussed.

Support service use by persons with AIDS and their caregivers.

The purpose of this study was to identify factors related to the use and non-use of emotional and practical support services by persons with AIDS (PWAs) and their informal caregivers. Unmet need for PWA support services and perceived barriers to the use of these types of services were also identified. Structured interviews were conducted with 472 self-selected informal AIDS caregivers in greater Los Angeles and the San Francisco Bay area. Data from a cross-sectional survey interview were analysed using logistic regression models fit for three categories of service use. Use of support services was substantial in this sample. Case management, caregiver HIV status, education, co-residence, and type of interpersonal relationship were important predictors of service use. Unmet need for PWA services was also substantial. The PWA's unwillingness to use services and lack of access were identified as key barriers to service use. Even in the presence of an informal caregiver, PWAs require considerable supplemental assistance from institutional sources. The presence of informal assistance to PWAs does not eliminate the need for institutional support. Moreover, caregivers themselves demonstrate considerable need for support.