Psychosocial implications of HIV serostatus disclosure to youth with perinatally acquired HIV

Recommendations suggest that older children and adolescents perinatally infected with HIV (PHIV+) be informed of their HIV diagnosis; however, delayed disclosure is commonly reported. This study examined the prevalence and timing of HIV disclosure to PHIV+ adolescents and the associations between the timing of disclosure and psychological functioning and other behavioral outcomes. Recruitment took place at four medical centers in New York City between December 2003 and December 2008. This sample included data from 196 PHIV+ youth and their caregivers: 50% of youth were male, 58% African American, 42% Hispanic, with a mean age of 12.71 years. According to caregiver reports, 70% of the PHIV+ youth knew their HIV diagnosis. Youths who had been told were more likely to be older; youths with a Spanish-speaking Latino caregiver and whose caregivers had a grade school education were told at an older age. Youths who had been told their HIV status were significantly less anxious than those who had not been told; there were no other differences in psychological functioning. Youths who knew their status for longer reported higher intentions to self-disclose to potential sex partners. In multivariate analyses only demographic differences associated with timing of disclosure remained. In summary, PHIV+ youth who had been told their HIV status did not show an increase of psychological problems and were more likely to have intentions to self-disclose to sexual partners. Yet, almost one third was entering puberty without important information regarding their illness. Caregivers need support to address factors impeding HIV disclosure.     

Parents' disclosure of HIV to their children

OBJECTIVE: Parents' disclosure of their HIV serostatus to all of their children is described over time and the impact of disclosure is examined for their adolescent children.DESIGN A representative cohort of parents living with HIV (n = 301) and their adolescent children (n = 395) was recruited and assessed repeatedly over 5 years. METHODS: Disclosures by parents living with HIV of their HIV status to their children were examined in three ways: (i) trends in disclosure over 5 years to all children; (ii) factors associated with parental disclosure; and (iii) the impact of disclosure on adolescent children (not younger children). RESULTS: Parents were more likely to disclose to older (75%) than to younger children (40%). Mothers were more likely to disclose earlier than fathers and they disclosed more often to their daughters than to their sons. Parents were more likely to disclose over time to children of all ages; disclosure did not vary according to parents' ethnicity, socio-economic status, self-esteem, or mental health symptoms. Disclosure was significantly more common among parents with poor health, more stressful life events, larger social networks, and those who perceived their children experiencing more HIV-related stigma. Over time, poor health status and a self-destructive coping style were associated with higher rates of disclosure. Parental disclosure was significantly associated with more problem behaviors and negative family life events among their adolescent children. CONCLUSION: Parental disclosure of HIV status is similar to disclosures by parents with other illnesses. Clinicians must assist patients to make individual decisions regarding disclosure.     

Mothers Disclosure of Maternal HIV Status to Children

Abstract

The present study examines the relationship between maternal disclosure of HIV status to children and key psychosocial variables. The article identifies three key psychosocial characteristics that may play a role in maternal HIV status disclosure to children: HIV-related perceptions of stigma, HIV-related stigma management, and social support. Eighty-eight (88) HIV women with children enrolled in outpatient care at an urban medical center completed the HIV-Related Perceptions of Stigma and HIV-Related Stigma Management measures, the Profile of Mood States (POMS), and items measuring social support and disclosure to children. Mothers who disclosed their HIV status to their children reported significantly fewer perceptions of HIV-related stigma, less use of concealment to manage HIV-related stigma, and more social support than mothers who did not disclose to their children. No differences were found between disclosure groups for physical or psychological distress. The perception of stigma attached to a mother's HIV positive status and strategies for managing this stigma emerged as the principal findings of the present study. These findings provide empirical support for identifying stigma and its management as a central focus for professionals working in the field of HIV and families. Additional empirical research is needed to fully understand the factors that influencematernal HIV Status disclosure to children.     

The influence of disclosure of HIV diagnosis on time to disease progression in a cohort of Romanian children and teens

The Joint United Nations Programme on HIV/AIDS (UNAIDS) estimates that in 2004, there were 39.4 million people living with HIV/AIDS worldwide (UNAIDS/WHO Report on the global HIV/AIDS epidemic, 2004). Children less than 15 years of age comprise 2.2 million of these individuals. As more children globally gain access to highly active antiretroviral therapy (HAART), more children are growing to the age when disclosure of their HIV status is inevitable. This information may affect a child's disease trajectory, and in the context of HAART, may have wide-ranging impact in the management of paediatric HIV infection. This study is an investigation of the effect of disclosure of a child's own HIV infection status on death and CD4 decline in a cohort of 325 HIV-infected Romanian children receiving highly active antiretroviral therapy (HAART). A retrospective database analysis was conducted. Data from a nearly three-year period were examined. Children who were aware of their HIV diagnosis were compared with those who were not aware. We found significant associations between not knowing the HIV diagnosis and death, and not knowing the HIV diagnosis and disease progression defined as either death or CD4 decline. Our results imply that in the context of HAART, knowledge of one's own HIV infection status is associated with delayed HIV disease progression.     

Prevalence and correlates of HIV serostatus disclosure: a prospective study among HIV-infected postparturient women in Barbados

This study was undertaken to determine the prevalence of self-disclosure of HIV status among the postparturient HIV-infected women and to describe the correlates of disclosure in this population. Subjects for this study include all known HIV-infected postparturient women in Barbados who delivered during 1997 through 2004. Sociodemographic data are routinely collected from all HIV-infected postparturient women. Data on disclosure were collected through one-to-one interview of the consenting women included in this study. One hundred thirtynine women were studied. Forty women (28.8%) had self-disclosed their HIV status to other people including their current sex partner. Among women who did not disclose their HIV status to anybody, 30 (30%) gave fear of stigmatization as the reason for nondisclosure, while 23 (23%) did not disclose their status as they feared abnormal reaction from their current sex partner and possible violence directed at them. Women who had disclosed their HIV status were more likely to use condoms during all sexual encounters, less likely to have had subsequent pregnancy from a different sex partner, were more likely to have a partner who had been tested for HIV, and were themselves more likely to be attending the centralized HIV clinic for follow-up and care compared to those who did not disclose. A substantial proportion of HIV-infected postparturient women never disclosed their result to a partner or a close relative. Lack of disclosure may have limited their ability to engage in preventive behaviors or to obtain the necessary emotional support for coping with their serostatus or illness.     

Gender differences regarding barriers and motivators of HIV status disclosure among HIV-positive service users

There are inconsistent findings about the relation between gender and HIV status disclosure. We conducted a facility-based cross-sectional study, using qualitative and quantitative data collection methods, to explore gender differences in HIV-positive status disclosure among service users in south-west Ethiopia. Among 705 participants, an equal number of men and women (94.6% men v. 94.3%, women) indicated that they had disclosed their result to someone, and the majority (90.9% men v. 90.7% women) to their current main partner. ‘It is customary to tell my partner everything’ was the most frequently cited reason for disclosing (62.5% men v. 68.5% women). Reasons for non-disclosure varied by gender: men were concerned about their partner's worry and exposure of their own unfaithfulness. Women feared physical violence, and social and economic pressure in raising their children. Factors that influenced disclosure also indicated gender variation. For men, disclosure of HIV results to a sexual partner was positively associated with knowing the partner's HIV status and discussion about HIV testing prior to seeking services, while for women it was associated with knowing the partner's HIV status, advanced disease stage, having no more than primary education, being married, and perceiving the current relationship as long-lasting.

There was no significant difference in the proportion of HIV status disclosure among men and women. However, the contextual barriers and motivators of disclosure varied by gender. Therefore it is important that clinicians, counsellors, and health educators underscore the importance of gender-specific interventions in efforts to dispel barriers to HIV status disclosure.     

Social Network Predictors of Disclosure of MSM Behavior and HIV-Positive Serostatus Among African American MSM in Baltimore,Maryland

This study examined correlates of disclosure of MSM behavior and seropositive HIV status to social network members among 187 African American MSM in Baltimore, MD. 49.7% of participants were HIV-positive, 64% of their social network members (excluding male sex partners) were aware of their MSM behavior, and 71.3% were aware of their HIV-positive status. Disclosure of MSM behavior to network members was more frequent among participants who were younger, had a higher level of education, and were HIV-positive. Attributes of the social network members associated with MSM disclosure included the network member being HIV-positive, providing emotional support, socializing with the participant, and not being a female sex partner. Participants who were younger were more likely to disclose their positive HIV status. Attributes of social network members associated with disclosure of positive serostatus included the network member being older, HIV-positive, providing emotional support, loaning money, and not being a male sex partner.     

Emotional and behavioural problems and family functioning in children with haemophilia: a cross-sectional survey.

A comparative study is presented about emotional and behavioural problems in haemophilia and family functioning. This cross-sectional survey looked at boys, aged between 4 and 15 years, with haemophilia and compared them with a group of their healthy school peers. A basic demographic questionnaire was used for both groups along with the Child Behaviour Checklist (CBCL) and the Family Assessment Measure (FAM). Seventeen of 24 families of boys with haemophilia participated (70.8% response). The comparison group consisted of 12 boys, i.e. 70.6% of the haemophilia sample. The groups did not differ in terms of the children's ages and family sizes but significantly fewer of the mothers of the boys with haemophilia worked outside the home. The two groups were compared for scores on the CBCL and FAM. More problems were identified in the haemophilia group on both measures, i.e. there were more emotional, behavioural and family difficulties compared with the healthy group; however, because of the small sample sizes, the differences between the groups did not reach statistical significance. A larger study would be indicated in order to explore these differences further.     

Knowledge of HIV/AIDS and emotional adjustment in a cohort of men with haemophilia and HIV infection: final report

This study presents the final report of a long-term psychological assessment of men with haemophilia and HIV infection. The knowledge, emotional impact regarding HIV infection and prospective changes over time and the need for psychological support were evaluated. The study group comprised 118 men with haemophilia, 66 HIV seropositive and 52 seronegative, from the Haemophilia Centres in Bari, Florence, Milan and Naples. All subjects performed psychological tests (STAI: state and trait anxiety inventory; SDS: self-rating depression scale) and completed questionnaires to ascertain their knowledge and the emotional impact of AIDS. After enrollment (1992-93) the assessment was repeated twice over a 2-year period. A high percentage of subjects in both groups answered the questionnaire on knowledge correctly and, more specifically, all (100%) admitted knowing that sexual intercourse was a risk factor for HIV infection, adding that sexual partners of haemophiliacs with HIV should be regularly tested. The percentage, however, decreased for seropositives who admitted to always using a condom during sexual intercourse (86%) and for those who declared that partners were periodically tested for HIV (60%). The most important feature of the study is that, contrary to predicted expectations, seropositive and seronegative subjects presented the same degree of emotional involvement: there are no statistically significant differences in average scores between groups either on the anxiety or depression scales. Moreover, for certain aspects, seronegatives revealed greater emotional involvement: at baseline evaluation, they felt more fear and unhappiness with statistically significant differences compared to asymptomatics. Furthermore, seronegatives more than seropositives continue to feel reluctance towards infusion and avoid blood products after learning of AIDS. These results emphasize the importance of paying due attention to the emotional status of seronegatives. Their reluctance towards the use of blood products (despite present safety) is a very important issue for the possible consequences of treatment with the risk of worsening the clinical condition. In conclusion, we believe that counselling on HIV infection/AIDS needs to address every person with haemophilia regardless of HIV status.     

The process of disclosing HIV serostatus between HIV-positive mothers and their HIV-negative children

The current study explores the impact of HIV disease on mothers as they face the task of balancing their own physical and psychological needs with the needs of their families as well as the additional burden of deciding whether to disclose their HIV status to their children. Qualitative interviews were conducted with 35 women and 19 children 10-18 years of age. Mothers were interviewed about the experience of being an HIV-positive mother and issues regarding disclosure. Children were also interviewed about the experience of having a mother who is HIV-positive and issues regarding disclosure. The decision to disclose was dependent on the child's developmental level, the degree of the mother's illness, and in some cases this decision was taken from mothers when someone else disclosed their HIV status to their children. Positive aspects of disclosure from the mother child dyads included open, honest communication, and closer relationships between mothers and their children. Common negative themes emanating from the data included fear, uncertainty, forced secrecy for fear of being ostracized based on the stigma associated with the disease, behavioral changes in the children, and shifting responsibilities between the mother and the child. Findings of the study suggest that disclosure, and all it entails, remains a vital issue for mothers who are HIV-positive. In addition, the findings reflected that children and their mothers have very different perspectives regarding the process and the effects of disclosure of the mother's HIV status. Clinical implications and recommendations for further research are discussed.     

Acceptance of HIV antibody testing among inpatients and outpatients at a public health hospital: a study of rapid versus standard testing

Patients of unknown HIV status who were admitted to the inpatient unit or who were undergoing evaluation in the outpatient clinic of a public health hospital were randomized to receive either the standard HIV test or a rapid HIV test. Patients ranged from 21-71 years of age, and 71% were male. Eleven percent were Hispanic, 36% black, and 48% Caucasian. 35% were injection drug users (IVDU) and 3% men who have sex with men (MSM). The waiting period for the standard test was 2 weeks, and that for rapid testing was approximately 20 minutes. Patients were provided with a telephone number and told to call and schedule a follow-up appointment to receive their standard test results. We found no statistical difference in the acceptance rates of either testing modality overall or with respect to age or gender. We did find a significantly greater percentage of Hispanic patients accepting rapid testing over standard testing (p = 0.04). The overall acceptance rates of rapid and standard testing were 60% and 41%, respectively. This was far lower than expected, and was due in part to the 40% of patients who refused testing because of their having a previous HIV test. All patients who had received previous testing had tested HIV negative, and we did not discover any new cases of HIV in the 103 patients tested during the study. Of those we tested, 95% of those receiving the rapid test and 43% of those receiving the standard test were informed of their status (p < 0.001). Failure of patients to return for follow-up visits accounts for the low percentage of individuals successfully informed of their standard test results. The study suggests that rapid HIV testing is at least as palatable as standard testing in our population. In addition, a far greater percentage of patients are informed of their status using the rapid HIV test. HIV testing programs at our hospital may not be cost effective as our population appears to have been heavily tested previously. Prior to initiating an HIV testing program within a hospital setting, it is imperative to determine the percentage of patients previously tested for HIV.     

Parental concerns on disclosure of HIV status to children living with HIV: children’s perspective

Disclosure is an important component of comprehensive management of children living with HIV infection (CLHIV). Many parental concerns are barriers for disclosure in children and only few studies addresses children’s perspective on these concerns. Our study aims to understand children’s perspective on parental concerns for disclosure and assess the knowledge of HIV. A questionnaire-based cross-sectional study involving CLHIV between 10 and 18 years attending HIV clinic in southern India, was conducted. Data were collected by directly interviewing only the children after obtaining consent from parents/caregivers. Initial open-ended questions were asked to assess the disclosure status and only fully disclosed children were included. Out of 362 enrolled eligible children, the prevalence of full and partial disclosure was 36.7% and 24%, respectively. The mean age of disclosure was 10.4 years (SD ± 2.6) and non-parental family members in an informal setting were the most common source of disclosure (38.3%). Forty-six percentages of parents were unaware of their child’s disclosure status. Only 2% had disclosed their status to others who were not part of their care. Among disclosed children, 33.8% became upset or sad upon knowing their status, 12% faced discrimination and 41.4% had complete knowledge about their illness. Though the prevalence of disclosure among CLHIV was high, a majority of them had incomplete knowledge about HIV infection. The parental concerns as reported in literature like the child is too young to disclose, concerns about coping, fear of stigma and discrimination and child disclosing to others were not expressed by children.     

Close relationships and safer sex among HIV-infected men with haemophilia

The present study sought to inform future behavioural intervention efforts by obtaining information from HIV-positive heterosexual men with haemophilia about their attitudes towards close relationships, attitudes towards risk reduction practices, and actual risk reduction practices. HIVinfected males with haemophilia ( n = 358) responded to a self-administered questionnaire. Men who reported being involved in a close relationship ( n = 237) were compared to men who said that they were not involved at the time of data collection ( n = 121). Involved men were more likely than uninvolved men to agree that close relationships provide benefits such as physical intimacy and communication, and that these benefits are important. Men who were not involved perceived more negative consequences of discussing HIV risk reduction with partners (including partner rejection and negative emotional reactions) than did involved men and were much more concerned about the potential negative consequences of risk reduction discussions. Involvement was associated with having disclosed HIV-seropositivity and having discussed HIV risk reduction. Risk reduction interventions for men with haemophilia who are not involved in close, sexual relationships should address positive and negative attitudes towards close relationships and towards discussing risk reduction. Interventions should emphasize communication skills and rehearsal of serostatus disclosure as well as of risk reduction discussions.     

HIV serostatus disclosure and lived experiences of adolescents at the Transition Clinic of the Infectious Diseases Clinic in Kampala, Uganda: a qualitative study

Most studies on HIV serostatus disclosure and adolescents focus on whether, how and when to disclose to adolescents their HIV diagnosis. Fewer studies have examined HIV serostatus disclosure by adolescents who know they are infected with HIV. This study presents qualitative data examining HIV serostatus and treatment disclosure practices and concerns of young people living with HIV in Uganda and the extent to which they are satisfied with current norms around HIV serostatus and treatment disclosure. We conducted two focus groups and interviewed 20 HIV-infected young people aged 15-23 receiving HIV care and treatment at the Transition Clinic in Kampala. Respondents perceived disclosure as a relationship encompassing both communication and self-conduct. Adolescents employed unique strategies to disclose their HIV status, notably joking to "test the waters" and emotionally prepare the other person before later disclosing in a more serious manner. Findings reinforce the idea that HIV disclosure is a process, not a one-time event. Interviewees anticipated both positive and negative outcomes of disclosure, including financial and emotional support, stigma, discrimination and rejection. They described a sense of violation of their autonomy when confidentiality was breached by third party disclosure, and also expressed fear of emotional distress for their loved ones. Although adolescents yearned to be in control of information about their HIV status and treatment, they have little space to call their own, and privacy is often compromised, especially because in traditional African settings, young people are considered to be dependents under the full responsibility of caregivers. Further exploration of disclosure outcomes and strategies specific to adolescents can help better tailor interventions towards youth. Antiretroviral therapy programmes should consider counselling for caretakers to appreciate and respect the privacy and disclosure concerns of their HIV-infected children.     

HIV status disclosure rate and reasons for non-disclosure among infected children and adolescents in Enugu,southeast Nigeria

Aims: To determine the rate of HIV status disclosure, caregivers’ reasons for non-disclosure, and factors influencing disclosure among a sample of HIV-infected children in Enugu, southeast Nigeria. Methods: Data were collected prospectively via a questionnaire on HIV-infected children and their caregivers who visited the pediatric HIV clinic of the University of Nigeria Teaching Hospital between July 1, 2012, and June 30, 2013. The data analysis was performed using Statistical Package for the Social Sciences version 19 software. Results: Caregivers of 107 children (age 5–16 years; mean 10.1?±?3.2 years) were enrolled in the study. There were 53 (49.5%) boys and 54 (50.5%) girls. HIV status had been disclosed to 31 (29%) of them. The major reason for non-disclosure was the child being considered too young. Age (p?p?p?=?.008) were seen as significant predictors of HIV disclosure. Conclusions: There is a low rate of HIV disclosure to infected children, and it was found to be lower for younger children. We recommend improving efforts for disclosure counseling to caregivers in pediatric HIV clinics.     

Disclosure of HIV status between spouses in rural Malawi

Disclosure of HIV status after HIV voluntary counseling and testing has important implications for the spread of the HIV epidemic and the health of individuals who are HIV positive. Here, we use individual and couples level data for currently married respondents from an ongoing longitudinal study in rural Malawi to (1) examine the extent of HIV status disclosure by HIV serostatus; (2) identify reasons for not sharing one's HIV status with a spouse; and (3) evaluate the reliability of self-reports of HIV status disclosure. We find that disclosure of HIV status is relatively common among rural Malawians, where most have shared their status with a spouse, and many disclose to others in the community. However, there are significant differences in disclosure patterns by HIV status and gender. Factors associated with non-disclosure are also gendered, where women who perceive greater HIV/AIDS stigma and HIV positive are less likely to disclose HIV status to a spouse, and men who are worried about HIV infection from extramarital partners are less likely to disclose their HIV status to a spouse. Finally, we test the reliability of self-reported HIV status disclosure and find that self-reports of HIV-positive men are of questionable reliability.     

Changes in hepatitis B serologic titers in HIV+ and HIV– children with haemophilia

This longitudinal study examines differences in hepatitis B immune titres in children and adolescents with haemophilia to determine if they are dependent on how immunity was acquired (vaccination or natural infection), and whether they are related to the child's HIV status and/or are influenced by HIV disease progression. Serologic titres (HBcAb, HBsAb) and HBsAg were measured prospectively at baseline, and at years 1, 2 and 3 of follow-up in 126 HIV- and 207 HIV+ children and adolescents with haemophilia. Analyses were performed to assess the impact of HIV status on the measured titres, and for HIV+ subjects to examine the association with CD4+ lymphocyte counts and p24 antigen status. The results show that HIV+ children were more likely than HIV- children to lose vaccine-induced immunity as indicated by the loss of HBsAb. There was an increased risk of losing HBsAb with higher CD4+ counts and younger age. Re-immunization was not successful in seven of eight HIV+ children. Two subjects (one HIV+, one HIV-) entered the study HBsAg- but became HBsAg+ over the course of follow-up. Seven HIV+ subjects lost natural immunity as indicated by the loss of HBcAb. The loss of either HBsAb or HBcAb in HIV--subjects was negligible to absent. In conclusion, because of the loss of immunity in HIV+ children the viral safety of factor replacement concentrates for these children is an important consideration. HIV- children rarely lose immunity, therefore frequent measures of HBsAb are not necessary.     

Social support,stigma, and HIV disclosure among parents living with HIV in Guangxi,China

Both stigma and social support have been identified to be associated with HIV status disclosure among people living with HIV. This study aimed to examine cross-sectional associations of perceived social support and multiple types of stigma with both disclosure to various target groups and timing of disclosure among parents living with HIV (PLHIV) in Guangxi, China. Cross-sectional data from 1254 PLHIV in Guangxi, China were analyzed. Measures included demographics, disclosure to specific groups (steady partner/spouse, children, family and others) and timing of disclosure, perceived social support, and three types of HIV-related stigma (perceived, internalized, and enacted stigma). Logistic regression analyses were performed to identify the associations of interest. The participants who reported higher levels of perceived social support were more likely to have disclosed to steady partner/spouse, family or others. Those who experienced enacted stigma were more likely to have disclosed to children or family. Those who were married/cohabitating were more likely to have disclosed to steady partner/spouse, and less likely to have disclosed to children, family or others. Older PLHIV were less likely to have disclosed to steady partner/spouse, or family. Those who had a job were more likely to have disclosed to steady partner/spouse. Perceived social support appeared not to be associated with timing of disclosure. Those who disclosed within a shorter time after diagnosis were more likely to be women or have disclosed to steady partner/spouse, and less likely to have higher perceived stigma or have disclosed to family. Interventions are needed to help reduce the negative effect of perceived stigma at both family and community levels and to help enhance perceived social support in general and emotional support in particular among PLHIV, especially males and older adults.     

Extent of disclosure: what perinatally HIV-infected children have been told about their own HIV status

How and when to disclose a positive HIV diagnosis to an infected child is a complex challenge for caregivers and healthcare workers. With the introduction of antiretroviral therapy, pediatric HIV infection has transitioned from a fatal disease to a lifelong chronic illness, thus increasing the need to address the disclosure process. As HIV-infected children mature, begin to take part in management of their own health care, and potentially initiate HIV-risk behaviors, understanding the nature of their infection becomes essential. Guidelines recommend developmentally appropriate incremental disclosure, and emphasize full disclosure to school-age children. However, studies from Sub-Saharan Africa report that disclosure to HIV-infected children is often delayed. Between 2013 and 2014, 553 perinatally HIV-infected children aged 4–9 years were enrolled into a cohort study in Johannesburg, South Africa. We assessed the extent of disclosure among these children and evaluated characteristics associated with disclosure. No children aged 4 years had been told their status, while 4% of those aged 5 years, and 8%, 13%, 16%, and 15% of those aged 6, 7, 8, and 9 years, respectively, had been told their status. Age was the strongest predictor of full disclosure (odds ratio 1.6 per year, p?=?.001). An adult living in the household who was unaware of the child’s status was associated with a reduced probability of disclosure, and knowing that someone at the child’s school was aware of child’s status was associated with an increased probability of disclosure. Among caregivers who had not disclosed, 42% reported ever discussing illness in general with the child, and 17% reported ongoing conversations about illness or HIV. In conclusion, a small minority of school-age children had received full disclosure. Caregivers and healthcare workers require additional support to address disclosure. A broader public health strategy integrating the disclosure process into pediatric HIV treatment programs is recommended.