Stitching the fabric back together: child fostering attitudes in the transition to a chronic HIV epidemic

There are an estimated 56 million orphans and vulnerable children across sub-Saharan Africa. Communities typically care for orphan children through informal caring arrangements – either within or outside of kinship networks. Within Kenya, an estimated 250,000 children live on the streets. There is less research related to fostering attitudes of this special population than orphans and vulnerable children generally. Important research over the past decade has illuminated multiple ways in which children are made more vulnerable because of HIV, including parental death and street-migration from HIV-affected households. As HIV transitions from a terminal illness to a chronic, manageable one, research is also required to establish how parents living with HIV can be an asset to children. In this study, we assess whether mothers living with HIV were very willing to foster biologically-related children, and street-involved children, how these fostering attitudes differed from mothers not living with HIV, and whether differences in fostering attitudes by reported HIV status were mediated by social support, family functioning and general self-rated health. Approximately 40% of mothers living with HIV were very willing to provide long-term foster care to biologically-related or street-involved children. This was less than the percentage of mothers not living with HIV, who were very willing to foster biologically-related children (61%) or street-involved children (58%). Significant portions of these differences were explained by social support, family functioning and general self-rated health. Multi-sectoral approaches are suggested by these findings in order to improve the child-fostering capacity of mothers living with HIV. Improving social support, family functioning and general self-rated health among HIV-infected mothers may not only provide protective benefits for the mothers and their children, but also expand the community’s capacity to care for orphan and vulnerable children.     

Disclosure of diagnosis and planning for the future in HIV-affected families in Europe

Information relating to disclosure of infection status in families affected by HIV and the existence of plans for the future social care of children with infected parents was collected as part of a larger survey on clinical and psychosocial service use of these families. Parents and alternative carers of HIV-affected children in follow-up in 10 paediatric centres from seven European countries were surveyed. A total of 182 questionnaires were returned: most (73%) were completed by parents, of whom 92% were HIV-infected. Of the 226 children cared for by the respondents, most (62%) were HIV-infected. Disclosure of both the child's and the parent's infection status was rare and found to be associated with child's age in both cases. Infected children living with their parents were less likely to know their diagnosis than those living in alternative care. Uninfected parents and carers were significantly more likely to want professional help with disclosing to an infected child than infected parents. Infected parents also face difficult decisions regarding the issue of who will care for their children when they are unable to. Half of the infected parents had made long-term plans for their children's future social care. European parents were more likely to have made such plans than those from elsewhere (mainly Africa) and parents with plans had known about their HIV infection for significantly longer than those without. Increasing numbers of vertically infected children are reaching adolescence as a result of improvements in the management of paediatric HIV infection. As both disclosure and planning for the future social care of HIV-affected children have been found to be strongly associated with child's age, the changing epidemiology of paediatric HIV highlights the need for more information on these issues in order to support families more effectively.     

“Like being in a cage”: stigma as experienced by adolescents whose mothers are living with HIV

Stigma affects not only the person living with HIV, but also, by association, their family members. Stigma-by-association may contribute to adverse outcomes for children of parents living with HIV. We interviewed 27 African-American adolescents, 13–18 years old, who were not HIV-positive but whose mothers were living with HIV. As part of a broader study, adolescents responded to four open-ended questions regarding their experience of HIV stigma-by-association. Their responses were analyzed using ATLAS.ti to identify themes. About half of the teens had not told anyone their mother’s HIV status but had heard peers make fun of or insult people with HIV. Anticipating stigma, teens used a range of strategies from being silent and vigilant to brushing off insults as ignorance and refusing to feel shame. In some instances, these strategies strained peer interactions and reinforced the mother/teen connection. With guidance, mothers may be well positioned to coach children and teens to identify stigma situations, manage those situations, and ultimately reduce stigma’s impact on both adolescent and mother. Group interventions with HIV-affected teens, with or without parental involvement, can ameliorate the strained peer relationships which teens described, reducing their isolation and empowering them with knowledge and decision-making skills.     

Educational outcomes of family-based HIV-infected and affected children from Maharashtra,India

India is home to 0.14 million children, living with HIV. Little is known about their educational needs. The present analysis estimated educational outcomes of family-based children affected by HIV/AIDS (CABA) and impact of their HIV status on educational outcomes. A situation analysis was undertaken in four districts from Maharashtra, India. A total of 510 parents/guardians of family-based CABA were interviewed. Data of single child per household, aged 6–16 years, were analyzed. Child not infected/not tested for HIV and having one/both parents infected with HIV was defined as HIV affected. Logistic regression analysis was used to understand determinants of ‘currently out of school’ and ‘lag behind age appropriate standard’. Of the total 472 CABA, 237 and 235 were HIV infected and affected respectively, 43% were girls, 70% were below 13 years of age, 51% resided in rural area, 83% belonged to lower economic strata and 61% had lost one/both parents. Higher proportion of HIV-infected children had history of hospitalization in the past year (26%) compared with HIV affected (7%). Majority of HIV-infected children (84%) were taking ART. A total of 23 (4.87%) children were currently out of school and 43 (9.23%) lagged behind age appropriate standard. Compared to HIV-affected, HIV-infected children were more likely to be out of school (aOR = 7.16, 95% CI = 1.79–42.47) and lagged behind age appropriate standard (aOR = 2.82, 95% CI = 1.17–6.81). Children 14–16 years old had higher risk of being out of school (aOR = 11.55, 95% CI = 3.46–50.65) and lag (aOR = 3.85, 95% CI = 1.79–8.29), compared to 6–13 years old children. Having lost mother and caregiver being illiterate independently predicted the lag. Among HIV-infected children, the most common reason for discontinuation of school was child’s illness. The analysis highlights greater educational disadvantages of HIV-infected children and its possible linkage with ill health of these children.     

Psychosocial support intervention for HIV-affected families in Haiti: implications for programs and policies for orphans and vulnerable children

Given the increased access of antiretroviral therapy (ART) throughout the developing world, what was once a terminal illness is now a chronic disease for those receiving treatment. This requires a paradigmatic shift in service provision for those affected by HIV/AIDS in low-resource settings. Although there is a need for psychosocial support interventions for HIV-affected youth and their caregivers, to date there has been limited empirical evidence on the effectiveness of curriculum-based psychosocial support groups in HIV-affected families in low-income countries. Therefore, the purpose of this study is to examine the feasibility and assess the preliminary effectiveness of a psychosocial support group intervention for HIV-affected youth and their caregivers in central Haiti. The study was conducted at six Partners In Health-affiliated sites between February 2006 and September 2008 and included quantitative as well as qualitative methods. HIV-affected youth (n = 168) and their caregivers (n = 130) completed a baseline structured questionnaire prior to participation in a psychosocial support group intervention. Ninety-five percent of families completed the intervention and a follow-up questionnaire. Psychological symptoms, psychosocial functioning, social support, and HIV-related stigma at baseline were compared with outcomes one year later. Qualitative methods were also used to assess the participants' perspectives of the intervention. Comparing pre- and post-intervention assessment, youth affected by HIV experienced decreased psychological symptoms as well as improved psychosocial functioning and social support. Caregivers (95% HIV-positive) demonstrated a significant reduction in depressive symptoms, improved social support, and decreased HIV-related stigma. Although further study is needed to assess effectiveness in a randomized controlled trial, corroborative findings from qualitative data reflected reduced psychological distress, less social isolation and greater hope for the future for families affected by HIV/AIDS following the intervention.     

Comparisons of HIV-affected and non-HIV-affected families over time

This study compares HIV-affected families' and their non-HIV-affected neighbors' behavioral health outcomes and family conflict. To compare two groups from the same neighborhoods at four points over 18 months, mothers living with HIV (MLH) (N?=?167) and their school-age children (age 6–20) were recruited from clinical care settings in Los Angeles, CA, and neighborhood control mothers (NCM) without HIV (N?=?204) were recruited from modal neighborhoods. In addition, children living at home who were 12 years and older were recruited. We assessed parenting behaviors, family conflict, mental health, sexual behavior, substance use, and HIV-related health behaviors over time. MLH perceived greater economic insecurity at baseline, less employment, and involvement in romantic relationships. MLH reported more emotional distress and substance use than NCM. MLH, however, reported lowered HIV transmission risk. The random regressions indicated that MLH exhibited higher levels of risk and became significantly less depressed and less anxious over time than their non-HIV-affected neighbors. MLH also reported less initial family violence and conflict reasoning than NCM; violence decreased and conflict increased over time for MLH relative to NCM. Children of MLH decreased their marijuana use but hard drug users of MLH increased their risk, over time, compared to children of NCM. Moreover, children of MLH reported more internalizing behaviors than children of NCM. Even when compared to other families living in the same economically disadvantaged communities, MLH and their children continue to face challenges surrounding family conflict and key behavioral health outcomes, especially with respect to substance use and mental health outcomes. These families, however, show much resilience, and MLH report lowered levels of HIV transmission risk, their children report no greater levels of HIV transmission risk, and levels of family violence were lower than reported by families in the same neighborhoods.     

Health-related quality of life (HRQoL) and its correlates among community-recruited children living with HIV and uninfected children born to HIV-infected parents in West Bengal,India

Purpose

Helping children living with HIV (CLH) to attain an optimum quality of life is an important goal for HIV programs around the world. Our principal objectives were to determine the association of HIV infection with different domains of health-related quality of life (HRQoL) among 8- to 15-year-old CLH in India and to compare the HRQoL parameters between CLH and HIV-negative children born to HIV-infected parents (“HIV-affected”). We also assessed whether antiretroviral therapy (ART) and CD4 lymphocyte counts were associated with HRQoL among CLH.

Methods

Using the “Quality of Life (health-related) of Children Living with HIV/AIDS in India” instrument, we interviewed 199 CLH and 194 HIV-affected children from three districts of West Bengal, India. Participants were asked to quantify the difficulties faced by them in six HRQoL domains: physical, emotional, social, school functioning, symptoms, and discrimination.

Results

The mean age of the participants was 11.6 (SD?±?2.5) years. CLH, compared to HIV-affected children, had poorer scores on all HRQoL domains except ‘discrimination.’ Among CLH, there were no significant differences in HRQoL domain scores (except in the ‘discrimination’ domain) between ART-treated and -untreated groups. CD4 lymphocyte count was found to be a significant positive predictor of the ‘symptom’ scale score.

Conclusions

In India, interventions for CLH mostly focus on biological disease. However, the current study revealed that HRQoL among CLH was much poorer than that of a socio-demographically comparable group. Culturally and developmentally appropriate psychosocial support measures for Indian CLH are urgently needed.

     

The context and process of pediatric HIV disclosure

This qualitative study sought to elicit the context and process of disclosure to children living with HIV (CLHIV) on antiretroviral treatment in Nigeria. The study, nested in a larger study, involved detailed interviews with 15 parent/caregivers of children ≥6 years, who had been told they were living with HIV. Most children were disclosed to at home by their parents/caregivers. The common reason for disclosure was related to the children taking their drugs. Disclosure was mostly unplanned and a one-off event, even when it was the healthcare worker who disclosed. The conversation about the child’s HIV status took place in private between the child and parent(s)/caregiver. Where several children were living with HIV in the family, parents/caregivers would usually disclose to the children at the same time, rather than individually. Children’s reaction to disclosure ranged from no reaction to shock and crying. Some parents felt they did not have the right skills to disclose. The disclosure decision model provides some insight into the disclosure process.     

Parents’ attitudes towards their children with cerebral palsy

A negative attitude towards disability from family not only impacts upon a child directly, but also adds to the existing stress levels of a family. It can be concluded the parental attitudes are assumed to be associated with the psychosocial development of children. The aim of this study was to assess parents’ attitudes towards their children with cerebral palsy (CP), and to examine the relationship between parental attitudes, emotional and behavioural problems, and other factors related to a child with CP and their parents. Parents of 70 children with CP (aged 6–13 years) completed questionnaires assessing parental attitudes and the Social and Emotional Behavioural Problematic scale. The results indicated that most parents had moderate attitudes towards their children with CP, although 40.7% of parents held negative attitudes. The results also revealed that there were statistically significant moderate negative correlations between parental attitudes, internalising behavioural problems and child order, and significant moderate positive correlations between parental attitudes, level of education, and type of school. Regression analysis revealed that internalising behaviour problems, aggression, child order, level of disability, parental income, and type of school contributed significantly to the variation in the prediction of parental attitudes towards their children with CP. Based on the findings, appropriate recommendations are suggested.     

Identification of psychological behaviours among children having parental HIV infection and their determinants in Myanmar: a comparative study with neighbourhood peers

Psychological impact is one of the direct and indirect consequences of HIV and AIDS on children. A national survey applying a cross-sectional comparative design was conducted among children aged 4–16 years with parental HIV infection and age-group matched neighbourhood peers without parental HIV infection to identify and compare their psychological behaviours and determinants. A multistage sampling method was used. Face-to-face interviews were conducted with parents/guardians of the children to obtain family characteristics and children’s psychological behaviours using the modified Strengths and Difficulties Questionnaire. Factor analysis identified three domains of psychological behaviours, namely social, emotional and conduct behaviours. Comparison of these behaviours was done using Chi-squared test with Rao–Scott adjustment. Determinants of these behaviours were identified using survey-weighted logistic regression adjusted for socio-demographic variables. A total of 1280 children with parental HIV infection and 1279 neighbourhood peers participated in the study. Social conditions of the two groups differed in terms of family displacement (24.6% vs. 8.9%, p < 0.001), family dispersion (12.4% vs. 3.7%, p < 0.001), and child displacement (10.3% vs. 3.5%, p < 0.001). Emotional behaviour was significantly different between the two groups (31.3% vs. 24.0%, p < 0.01) but no difference in social or conduct behaviours was evident. Children from extended families (adjusted odds ratio (AOR): 1.34, 95% CI: 1.07–1.67), females (AOR: 1.37, 95% CI: 1.07–1.75), orphans (AOR: 1.62, 95% CI: 1.29–2.05) and children who experienced family displacement (AOR: 1.38, 95% CI: 1.11–1.72) were more likely to have abnormal emotional behaviour. Children from extended families (AOR: 0.77, 95% CI: 0.62–0.97) had less chance of having abnormal conduct behaviour. In contrast, preschool (AOR: 2.73, 95% CI: 1.92–3.87) and out-of-school children (AOR: 1.47, 95% CI: 1.01–2.27) were more likely to have abnormal conduct behaviour. Development of long-term strategies for reducing the risk of behavioural problems among children with parental HIV infection is suggested.     

AIDS in the family and community: The impact on child health in Malawi

Pediatric HIV infections jeopardize children’s health and survival. Much less is known about how the experiences of being orphaned, living with chronically ill parents, or living in a severely affected community impact child health. Our study responds by examining which HIV/AIDS-related experiences place children at greatest risk for poor health. Data from the 2004–2005 Malawi Integrated Household Survey were analyzed using logistic multilevel modeling to examine whether HIV/AIDS-related experiences within the family and community predicted reported health status among children age 6–17 years. We found higher burdens of acute and chronic morbidity for children whose parents have an AIDS-related illness. No other AIDS-related exposure, including orphanhood and recent household deaths, demonstrated a clear relationship with health status. Children living with sick parents may be at increased risk due to the spread of infectious disease and receiving limited adult care. Community home-based care programs are best situated to identify children in these difficult circumstances and to mitigate their disadvantage.     

Disclosure of parental HIV/AIDS to children in rural China

Abstract

The purpose of this study is to examine the complex issue of disclosure of parental HIV/AIDS to children in rural China. Semi-structured interviews were conducted with children affected by HIV/AIDS aged 8–17 (n?=?16), their caregivers (n?=?16) and key informants in the community (n?=?5). Findings showed that most children were shielded from knowing the HIV/AIDS status of their parents, although many children may have drawn their own conclusions through observation or sources outside the family. Caregivers felt discouraged and hesitated to discuss parental HIV/AIDS with children due to societal stigma and lack of knowledge and skills. Interventions are needed to improve caregivers' skills to communicate about HIV/AIDS with children. Interventions are also needed to reduce the stigma and discrimination towards people living with HIV/AIDS and their families.     

Attitudes towards and perceptions of reproductive health needs of persons living with HIV/AIDS in rural Kilimanjaro,Tanzania

The introduction of antiretroviral treatment has resulted in the resumption of socially productive and sexually active lives of people living with HIV/AIDS, together with the desire for children. However, factors affecting the reproductive health needs of people living with HIV/AIDS are not well understood. With this in mind, the aim of this paper was to investigate factors associated with these health needs using a qualitative approach. Findings indicate that attitudes and perceptions about reproductive health needs are influenced by fertility beliefs, the central role of family, procreation and the perceived social and clinical consequences of pregnancies among people living with HIV/AIDS. While there was mixed opinion about acceptability of people living with HIV/AIDS, having children, marriage and family were institutions important for partnerships maintenance and procreation. These findings suggest that living with HIV in a community with strong pro-life attitudes is challenging for people living with HIV/AIDS who do not have children. Apart from having to grapple with potential stigma of not having children, people living with HIV/AIDS also face social challenges in realising their reproductive choices. Interventions to address stigma, societal changes and the integration of reproductive-health education into HIV care and treatment are needed.     

Disclosing HIV diagnosis to infected children: A health care team's approach

Abstract

Telling children that they have HIV is a one of the most difficult psychosocial issues for parents and professionals caring for children with HIV. The literature presents three primary reasons for this: concerns for children's emotional well-being, fear that children will not be able to keep the secret within the family and maternal fear of blame when the virus is transmitted from mother to child. Through research and clinical experience, our HIV team has developed strategies for balancing the needs of parents and children through the three major stages of disclosure: pre-disclosure preparation; the disclosure event and immediate support; and post-disclosure: ongoing assessment, support and information. Before children are told about their HIV, we provide them with health information through partial truth-telling, building gradually upon their knowledge about their health while supporting their parents as they move towards disclosure. We provide support and information during the disclosure event, as planned with parents, and ongoing support after disclosure, as children gain knowledge and understanding of their health and HIV issues. We discuss issues such as multi-disciplinary communication and delayed disclosures.     

Stresses on grandparents and other relatives caring for children affected by HIV/AIDS

This study investigated the needs of relative caregivers of children in the child welfare system whose parents had HIV. Families of children supported by the state child welfare agency were invited to participate in the study; 17 families reported that HIV affected them and 11 families did not identify HIV as an issue. The findings indicate that complex emotional and behavioral issues stressed the HIV-affected kin caregivers; these issues included the children's behavioral problems, HIV-related concerns, adolescent issues, emotional difficulties, and sexual abuse, HIV-affected caregivers had more concern about their health and multiple roles. Nonaffected caregivers were less likely to report severe parenting stress and more likely to report financial stress. HIV-affected caregivers require attention and intervention by social workers, child welfare workers, and case managers.     

Untangling the web: a close look at diagnosis disclosure among HIV-infected adolescents.

As children living with human immunodeficiency virus (HIV) survive into adolescence and young adulthood, attention to the relationship of diagnosis disclosure to psychological functioning, interpersonal relationships, and HIV prevention is needed. This exploratory study describes the level of adolescents' diagnosis disclosure to family, friends, and potential sexual partners, and the relationship between disclosure and psychosocial variables.     

Prevalence and Factors Affecting Discrimination Towards People Living With HIV/AIDS in Indonesia

ObjectivesThis study aimed to identify the behaviors associated with discrimination towards people living with HIV/AIDS (PLHA) in Indonesia and to determine the factors affecting discrimination.MethodsSecondary data from the 2017 Indonesia Demographic and Health Survey were analyzed using a cross-sectional design. Discrimination was assessed based on the questions (1) “Should children infected with HIV/AIDS be allowed to attend school with non-infected children?” and (2) “Would you buy fresh vegetables from a farmer or shopkeeper known to be infected with HIV/AIDS?” Multivariable logistic regression was used to determine the factors affecting discrimination, with adjusted odds ratio (aOR) and 95% confidence interval (CIs) used to show the strength, direction, and significance of the associations among factors.ResultsIn total, 68.9% of 21 838 individuals showed discrimination towards PLHA. The odds of discrimination were lower among women (aOR, 0.63; 95% CI, 0.55 to 0.71), rural dwellers (aOR, 0.81; 95% CI, 0.75 to 0.89), those who understood how HIV is transmitted from mother to child (aOR, 0.81; 95% CI, 0.73 to 0.89), and those who felt ashamed of their own family’s HIV status (aOR, 0.56; 95% CI, 0.52 to 0.61). The odds were higher among individuals who knew how to reduce the risk of getting HIV/AIDS (aOR, 1.27; 95% CI, 1.15 to 1.39), how HIV/AIDS is transmitted (aOR, 3.49; 95% CI, 3.09 to 3.95), and were willing to care for an infected relative (aOR, 2.78; 95% CI, 2.47 to 3.13). A model consisting of those variables explained 69% of the variance in discrimination.ConclusionsGender, residence, knowledge, and attitudes related to HIV/AIDS were explanatory factors for discrimination against PLHA. Improvements in HIV/AIDS education programs are needed to prevent discrimination.     

Children's body mass index and nutrition intake in HIV/AIDS

Abstract

HIV/AIDS in China poses many challenges for caregivers and their children. A total of 154 caregivers of HIV/AIDS-affected families were interviewed to examine the children's nutrition intake and body mass index (BMI) in the context of HIV/AIDS in the family. The results showed that 25% of children in HIV/AIDS-affected families were underweight or at risk of being underweight according to US criteria. More than half the children reported that their consumption of protein such as meat, eggs or milk ranged from not at all to two times during the past month. About 40% of the children sometimes or often went hungry due to insufficient food. The study findings underscore the need to improve the nutrition and general health of children of people living with HIV/AIDS.     

'I felt I have grown up as an adult': caregiving experience of children affected by HIV/AIDS in China

Background The growing global epidemic of HIV/AIDS has a significant impact on the lives of both people living with HIV/AIDS and their family members including children. Children of parents with HIV/AIDS may experience an increased responsibility of caregiving in family. However, limited data are available regarding the caregiving experience and its impact on psychosocial well‐being among these children. This study was designed to address these issues by using qualitative data collected from children affected by HIV/AIDS in China. Methods The qualitative data were collected in 2006 in rural central China, where many residents were infected with HIV/AIDS through unhygienic blood collection procedures. In‐depth individual interviews were conducted by trained interviewers with 47 children between 8 and 17 years of age who had lost one or both parents to AIDS. Results Findings of this study suggest that many children affected by AIDS had experienced increased responsibilities in housework and caregiving for family members. Such caregiving included caring for self and younger siblings, caring for parents with illness and caring for elderly grandparents. Positive impacts from children's participation in family caregiving included personal growth and emotional maturity. Negative consequences included physical fatigue, psychological fear and anxiety and suboptimal schooling (dropping out from school, repeated absence from school and unable to concentrate in class). Conclusion While the increased caregiving responsibilities among children reflected some cultural beliefs and had some positive effect on personal growth, the caregiving experience generally negatively effected the children's physical and mental health and schooling. The findings in the current study suggest that community‐based caregiving support is necessary in areas with high prevalence of HIV and limited resources, especially for the families lacking adult caregivers. In addition, social and psychological support should be made available for children participating in family caregiving.     

Challenges to re-enrolling perinatally HIV-infected and HIV-exposed but uninfected children into a prospective cohort study: strategies for locating and recruiting hard-to-reach families

Children infected with the human immunodeficiency virus (HIV) are living longer. Studies aimed at understanding the health and well-being of these children as they age into adolescence are enhanced by research designs that include appropriate comparison groups. HIV-exposed but uninfected children are one such comparison group; however, recruitment of this comparison group is challenging because uninfected children may no longer be followed at tertiary care centres, and some may be in foster care or no longer living with their biological parents. This paper describes the recruitment methods, sampling plan, and factors associated with enrolling perinatally HIV-infected children and a comparison group of HIV-exposed but uninfected children into the HIV Follow-up Of Perinatally Exposed Children (PACTS-HOPE) prospective cohort study. The source population consists of HIV-infected and uninfected children originally enrolled in the Perinatal AIDS Collaborative Transmission Study (PACTS). Recruitment took place at paediatric HIV clinics in four US locations between March 2001 and March 2003. A total of 182 HIV-infected and 180 uninfected children were enrolled. Enrolment of uninfected children was much harder than that of infected children because the former often could not be located. After adjusting for site and birth-year category, uninfected children born to white mothers were significantly less likely to be enrolled (P < 0.01). There was a trend for infected and uninfected children of mothers with a history of injection drug use to enrol at lower rates. Although recruitment of the uninfected comparison group was challenging, it was nevertheless facilitated by hierarchical recruitment techniques, involvement of family networks, and continuity of study staff. The PACTS-HOPE cohort will provide opportunities for future research aimed at understanding the unique effects of HIV on the well-being of HIV-infected children.