HIV-positive Parents Research Articles

Parents Living with HIV in China: Family Functioning and Quality of Life

In China, HIV shifts the lifestyle of not only parents living with HIV/AIDS, but also their children, partners, and extended families. We examined factors related to the quality of life of parents living with HIV and the relation between family functioning and individual quality of life. Interviews were conducted with a total of 116 parents living with HIV/AIDS. Analyses of variance, Pearson correlations, and multiple regression analyses were performed to examine the relation between family functioning and quality of life. We found a significant association between family functioning and individual quality of life for parents living with HIV. In particular, family sociability had a strong relationship with the quality of life of parents living with HIV. Parents living with HIV from families where both parents are HIV-positive reported a lower level of family sociability than those from families with only one HIV-positive parent. HIV disclosure, family sociability, and number of children per family were found to be significant predictors of overall quality of life for the population. Study findings underscore the importance of developing interventions that improve family functioning for people living with HIV/AIDS in China.

'What if they ask how I got it?' Dilemmas of disclosing parental HIV status and testing children for HIV in Uganda

Limited research has been conducted outside Western settings on how HIV-positive parents decide to test and disclose their own HIV status to children. We conducted a qualitative study in 2001 and 2005 to assess parent attitudes and current counselling policy and practice regarding child testing and parental disclosure in Uganda prior to the roll-out of antiretroviral therapy. Parent perspectives were obtained through extended in-depth interviews with 10 HIV-positive parents recruited from The AIDS Support Organization (TASO), Entebbe branch. Counselling policy and practice were explored through key informant interviews with directors and two counsellors from each of five Ugandan counselling institutions with national or regional coverage. Respondents had 51 children ranging from 4 to 36 years with a median age of 13. Five of 10 parents had disclosed their status to their children, usually to all, and four of these had tested one child for HIV. All those who tested any child had also disclosed their status to some or all of their children. Parents regularly worried that their children may be infected, but all preferred to wait for emergence of symptoms before considering HIV tests, citing fear of children's emotional reaction and lack of perceived benefits from knowing status. Counselling policy directors confirmed the absence of policy and training guidelines on the subject of parent-child disclosure. Counsellors reported improvising and giving inconsistent advice on this common concern of clients. Concerns over disclosure to children of parent's HIV status and testing children for HIV represent a major psychological burden for HIV-positive parents. Further research is needed, but current counselling practice could be improved now by adapting lessons learned from existing research.

The social and economic impact of parental HIV on children in northern Malawi: Retrospective population-based cohort study

From population-based surveys in the 1980s in Karonga district, northern Malawi, 197 ‘index individuals’ were identified as HIV-positive. 396 HIV-negative ‘index individuals’ were selected as a comparison group. These individuals, and their spouses and children, were followed up in 1998–2000. 582 of 593 index individuals were traced. 487 children of HIV-positive, and 1493 children of HIV-negative, parents were included in analyses. Rates of paternal, maternal, and double orphanhood among children with one or both parents HIV-positive were respectively 6, 8, and 17 times higher than for children with HIV-negative parents. Around 50% of children living apart from both parents had a grandparent as their guardian; for most of the rest the guardian was an aunt, uncle, or sibling. There were no child-headed households. Almost all children aged 6–14 were attending primary school. There was no evidence that parental HIV affected primary school attainment among children <15 years old. Children of HIV-positive parents were less likely to have attended secondary school than those of HIV-negative parents. The extended family has mitigated the impact of orphanhood on children, but interventions to reduce the incidence of orphanhood, and/or which strengthen society's ability to support orphans, are essential, especially as the HIV epidemic matures and its full impact is felt.

"I finally got real parents, and now they're gonna die"--A case study of an adolescent with two HIV-positive parents.

Although several authors have addressed the matter of how children are affected when an adult caretaker has AIDS, most have focused on younger children, ages 3 to 10, rather than on adolescents. Even fewer authors have addressed the specific ways in which adolescents of different ethnic and socioeconomic groups respond to having a parent who is HIV-positive, or has developed full-blown AIDS. This case study examines the various therapeutic strategies used in working with the family of an adolescent Hispanic male street gang member whose mother was HIV positive, and whose father had already developed AIDS.

Breastfeeding and HIV transmission – Authors' reply

In their Comment on the paper by Hoosen Coovadia and colleagues Wendy Holmes and Felicity Savage expose their personal biases by warmly embracing the papers findings and fail to contextualise its importance. The paper describes the risks of mixed feeding (both formula and breast feeding) compared with exclusive breast feeding in infants of HIV-positive women. Coovadia and colleagues note mortality in the first 3 months of life was roughly doubled in the group receiving formula feeding compared with the exclusive breast feeding group (15% vs 6%) and cautiously describe this as a concern without offering any explanation. They do however acknowledge an obvious selection bias in that mothers who chose to formula feed were significantly more likely (p<0.0003) to have CD4-cell counts of less than 200 per microL than were mothers who exclusively breastfed. Holmes and Savage fail to recognise or choose to ignore this major bias and instead highlight the finding as important in adding to the accumulation of new evidence on the hazards of formula feeding. They support this assertion by oddly referencing a Botswanian study that found breastfeeding plus zidovudine prophylaxis was not as effective as formula feeding in preventing postnatal HIV transmission and was associated with a similar mortality rate at 18 months. A more balanced Comment could have discussed the limitations of comparing mortality outcomes at 6 months (as opposed to say 2 or 5 years when the full effect of HIV-infection-related deaths secondary to breastfeeding would be overt) the feasibility of supporting exclusive breastfeeding in nonresearch settings and the papers relevance to the development of infant feeding policies for urban HIV-positive parents who might prefer formula feeding recognising its acceptability safety and efficacy in diverse urban settings such as Abidjan Cote dIvoire; Soweto South Africa; and Bangkok Thailand. (excerpt)

Prevalence of HIV Neonatal Infection Amongst Babies Born to HIV Positive Parents in Maiduguri North-Eastern Nigeria

Prevalence of HIV Neonatal Infection Amongst Babies Born to HIV Positive Parents in Maiduguri North-Eastern Nigeria

Women, reproductive rights, and HIV/AIDS: issues on which research and interventions are still needed.

From 2002 to 2005, two literature reviews identified a number of reproductive health issues that appeared to be relatively neglected in relation to HIV/AIDS: contraceptive information tailored to the needs of HIV-positive people; voluntary HIV counselling and testing during antenatal care, labour, and delivery; parenting options for HIV-positive people besides pregnancy through unprotected intercourse (i.e. assisted conception and legal adoption or foster care); unwanted pregnancy; and abortion-related care. An additional finding was that stigma and discrimination were frequently cited as barriers to enjoyment of reproductive rights by HIV-positive women. Subsequently, a pilot project was initiated in which non-governmental organizations (NGOs) in developing countries used benchmarks to ascertain whether these neglected issues were addressed in local programmes and interventions serving women affected by HIV and AIDS. The benchmarks also assessed whether policies and programmes paid attention to the human and reproductive rights of HIV-positive women. This paper describes the main findings from the two exercises in relation to contraception for women living with HIV or AIDS, abortion-related care, legal adoption by HIV-positive parents, and reproductive rights. It concludes with a number of recommendations on topics to be incorporated into the international research agenda, policies, and programmes in the field of HIV/AIDS.

Assessing Capacity for Self-Care among HIV-Positive Heads of Household: Bilingual Validation of the Parental Self-Care Scale

For many people living with HIV/AIDS (PLHA), coping with a lifelong and life-threatening illness is complicated by the roles and responsibilities of parenting (Antle, Wells, Goldie, DeMatteo, & King, 2001). The demands of child rearing, taken together with experiences of stigmatization, injustice, and uncertainty about one's own future, underscore the need for professionals to better understand the circumstances of HIV-positive parents and to develop constructive means of support. Interviewing English- and Spanish-speaking HIV-positive women, Aranda-Naranjo, Portillo, Schietinger, and Norgan (2002) found that caring for self was often secondary to caring for family. Respondents valued creating an atmosphere of normalcy for their children despite their own illness, spent considerable time on children's needs, and identified them as their primary reason for living. Fullilove and colleagues (2002) identified challenges faced by women of color in obtaining culturally sensitive services, reporting that ancillary services (transportation, child care, and mental health and substance abuse treatment) may be especially difficult to obtain. Such women may find themselves disadvantaged when competing for service funding and may be least likely to effectively advocate for their own financial, political, or social needs. Balancing obligations as caregiver and care recipient may mean taking care of basic survival needs, negotiating care for infected and affected household members, managing adherence to one's own medical regimen, and finding providers who communicate well and can be trusted (Aranda-Naranjo et al., 2002). These issues may be further complicated by immigrant status. Celia and colleagues (1998) observed the importance of developing assessments of health-related quality of life that could be usefully compared across differing populations, while Miller, Guarnaccia, and Fasina (2002), acknowledging the disproportionate impact of AIDS on people of Latino origin, called for increased Spanish translation of tools for prevention education and health-related assessment. Bandura's (1997) concept of self-efficacy, the belief that one's behavior would result in a certain desired outcome, has been associated with numerous health-related conditions. Generally considered to be variable with circumstances rather than characteristic of individuals, it is best conceptualized for measurement as being specific to particular experiences and expressed as real-world challenges that people of interest are likely to face (DeVellis & DeVellis, 2001). For women in advanced stages of HIV/AIDS who have young children, successful adherence to antiretroviral medications has been significantly related to self-efficacy regarding their treatment, and outcome expectancies regarding its benefits (Murphy, Greenwell, & Hoffman, 2002). Among people affected by HIV/AIDS, parents' beliefs in their abilities to care for their children have been assessed by Dorsey, Klein, and Forehand (1999) using Allen's (1993) Parenting Efficacy Scale to measure five dimensions: love, control, communication, education, and general self-efficacy. Shively and colleagues (2002) reported an initial validation of the HIV Self-Efficacy Questionnaire, capturing six domains of PLHA experience (managing mood, medications, symptoms, and fatigue; communicating with the health care provider; and getting support). The need for measures allowing comparisons among differing cultural and social groups is particularly strong in the context of the HIV/AIDS pandemic, where so many different groups require assistance in varying health care and social service settings (Skevington, 2002). Our instrument represents the first effort to capture self-efficacy from the perspective of parents in HIV-infected or -affected households, referenced to the challenges of caring for self while remaining responsible for others, and is the first assessed for its potential use with both English- and Spanish-speaking respondents. …

Children and adolescents living with HIV positive parents: Emotional and behavioural problems

This study explores the emotional and behavioural problems in children living with an HIV-positive parent, and identifies specific high-risk and protective factors for their psychological well-being. Data were collected on 718 parents living with HIV and on 1136 HIV-affected children in a European multi-centre study (EUROSUPPORT IV) adopting a cross-sectional and retrospective study design. Sociodemographic characteristics, HIV-related stressors, variables relating to caregiving and outcome variables relating to family functioning and children's symptoms were assessed using a self-reported questionnaire. Results indicated a low level of parental HIV disclosure to children, and an elevated level of behavioural symptoms in HIV-affected children as reported by parents. Children had experienced a high degree of distressing life events. In multivariate analysis, perceived healthy family functioning emerged as protective for a low degree of behavioural symptoms in children and adolescents. The results call for a shift towards family-centred service delivery in HIV care and counselling. Service implications are discussed in the light of increasing numbers of women and couples living with HIV who become parents and need tailored support in facing the challenges of being a caregiver living with HIV.

Deaths of HIV-Positive Men in the Context of Assisted Reproduction: Five Case Studies from a Single Center

Provision of reproductive services to individuals infected with HIV-1 is gaining popular acceptance and is generally endorsed by specialists in reproductive medicine. In the situation in which the male is HIV positive and the female partner is not infected, a large body of evidence has demonstrated that the use of assisted reproductive technology is effective for achieving pregnancy, while eliminating the risk of viral transmission to the mother and fetus. No reports have documented the well-being of the HIV-infected partners subsequent to seeking fertility services. In the current report, we document the cases of five HIV-positive men who died secondary to complications of HIV infection shortly after participating in the assisted reproduction program for HIV-1-serodiscordant couples at Columbia University. Three of these couples successfully achieved pregnancy and live birth, including one set of triplets, and one case of posthumous conception; the fourth case resulted in the cryopreservation of all embryos after the sudden death of the male before the time of embryo transfer; the fifth couple failed to conceive. None of the deaths, which occurred within a few months to 2 years from initial consultation, were related to infertility treatment. The demographic and social statuses of these patients were not different from the general population of men seeking assisted reproduction in our clinic. Regarding the HIV infection status of these cases, three patients had a longer duration of infection compared to the general population of men in our cohort, and one had a significantly lower CD4 cell count. All five men had stable HIV viral loads, and were determined by their primary care providers to be clinically healthy at the time of entry into the program for assisted reproduction. The untimely deaths of these patients underscores the importance of the thoughtful consideration of the complex issues involved in family planning for these individuals, including advanced directives for the use of cryopreserved gametes and embryos, and the social, emotional, and practical issues for the children and surviving partners subsequent to the death of the HIV-positive parent.

Effects of Peer Mentoring on HIV-Affected Youths' Substance Use Risk and Association with Substance Using Friends

This study evaluates the effectiveness of peer mentoring (PM) for urban youth with a HIV-positive parent. Families were randomly assigned with a weighting procedure to a PM program centered around 20 older, trained peer mentors with adult supervision (59 families with 96 eligible youths), or control condition (35 families with 61 eligible youths). The youths were 51% male, 91% minority; mean age was 11.4 years. Outcomes measured one year later were: (1) friends' substance use; and (2) substance use risk, a composite measure of subject's substance use plus friends' substance use. Since only about half (53%) of assigned youths attended PMactivities, PM attendance frequency rather than group assignment was used as the variable representing program participation. Ordinary least squares regression was used to control for baseline covariates and multilevel modeling to control for the nested effect of youths within families. PM attendance predicted both outcomes for the two types of analysis. Results show that participating in peer mentoring activities may reduce the size of peer substance-user networks and substance use risk among vulnerable youth.

Substance Use Among Young Adolescents in HIV-Affected Families: Resiliency, Peer Deviance, and Family Functioning

This study examines the association of risk and protective factors with substance use among 77 early adolescents (11–15 years old) with an HIV-infected parent who were interviewed in 2000–2001 in the South Bronx, a HIV high-prevalence area of New York City. The subjects were 49% female, 53% African American, and 30% Hispanic; mean age was 13 years old. A face-to-face interview was used to administer a battery of instruments representing community, family, peer, and resiliency factors. Forty percent reported ever using tobacco, alcohol or drugs; 71% were aware of their parent's HIV seropositivity. An age-adjusted path analytic model was constructed which showed : 1) family functioning predicted resiliency (a composite measure of psychological adjustment and personal competencies); 2) positive community factors and resiliency predicted less affiliation with deviant peers; and 3) poorer family functioning and affiliation with deviant peers predicted substance use. These results underscore the need for interventions that address social influence factors among vulnerable early adolescents with HIV-positive parents.

Helping Adolescent Children of HIV-Positive Parents to Cope

Medical care and mental health support often are directed to HIV-positive patients without much attention being paid to other family members. This

The effects of HIV infection and AIDS on children in Africa.

Two months ago, I was in rural Uganda with a team of local researchers. Mud houses with grass roofs were connected by a maze of footpaths, and roads were few and far between. We were there to interview people in homes where children were affected by AIDS. Some of the children were living with an HIV-positive parent. Others were already orphans and had been taken in by a relative. It struck me, as we advanced awkwardly by van, how frequently we stopped at eligible homes to dispatch an interviewer. You could throw a stone from one household confronted with AIDS, and it would land in the neat garden plot of the next. This disease closes in on children from all sides in the hard-hit regions of East and Southern Africa. Children nurse their parents during prolonged illness and watch them suffer and die. Some even watch their guardians succumb to AIDS. They lose sisters and brothers, uncles and aunts, teachers and leaders. At the very least, they grow up sharing their meals with orphaned cousins. The US Bureau of the Census estimates that, by the end of 2000, 15.6 million children around the world had lost a mother or both parents to AIDS. By 2010, at least 44 million children will have lost a mother, father, or both parents to AIDS. Even these daunting figures exclude older orphans aged 15 years and older, children orphaned by war and other causes, orphans on the streets and in institutions, and children whose parents are ill with opportunistic infections of AIDS. Perhaps the unluckiest children of all are those infected from birth or in infancy. True, we can take heart in our slowly improving ability to reduce the transmission of HIV from mother to child. But already 1.5 million children in Africa are living with AIDS. And until HIV-positive mothers are kept alive, their virus-free children are sentenced to orphanhood and its attendant vulnerabilities.

Characteristics of injection drug using parents who retain their children

While it is known that injection drug users (IDUs) often have their children removed or place them voluntarily, little is known about factors associated with whether IDU parents live with their children. We identified a community sample of 391 IDU parents with at least one child under age 14 (index IDU parents). For these IDU parents, 62% did not have any of their children under age 14 living with them. We assessed whether certain health factors, risk related behaviors, social indicators, and active drug use were related to whether children of IDUs were living with the index IDU parent. IDU parents who were living with their children were overwhelmingly more likely to be female, more likely to have health insurance, and engage in no-risk or low-risk drug practices, as compared to moderate/high-risk practices. Additionally, HIV negative and HIV positive asymptomatic parents were about three times more likely to be living with their children than HIV positive parents with clinical symptoms commonly seen among those suffering from HIV-related illnesses. HIV-related clinical symptoms, rather than HIV status per se, seem to be associated with retention of children.

Reasons given for disclosure of maternal HIV status to children

The purpose of this investigation was to ascertain the reasons given by mothers diagnosed with AIDS (acquired immunodeficiency syndrome) for disclosing or not disclosing their HIV (human immunodeficiency virus) status to their children, a dilemma faced by most HIV-infected parents and those who counsel them. We interviewed 29 mothers residing in one of two New York City facilities that provide housing and medical treatment for adults with AIDS. The majority of these mothers do not live with their children, but all had recent face-to-face contact with them. The two reasons most frequently considered important for disclosing to children were that disclosure was the "right thing to do" and the need to make arrangements for children's future in case of maternal death or incapacity. The reason most frequently considered important for not disclosing was maternal concern about discussing death and dying with children. These findings have significant implications for counseling of HIV-positive parents.

HIV-Seropositive Parents: Parental Role Strain and Depressive Symptoms

There is a paucity of studies that examine the impact of parenting strain on the mental health of HIV positive parents. This study compared HIV+ mothers and fathers on five dimensions of parenting strain, and examined sex differences in the effects of parenting strains on depressive symptoms. HIV+ mothers reported significantly more emotional/behavioral problems of children, more child physical health problems, and more child-related financial strain as compared to HIV+ fathers. The groups did not differ on mean levels of intrapsychic strain or interpersonal strain related to children. Increased parental role strain was associated with increased depressive symptoms, irrespective of the sex of the parent. Future research should assess the extent to which these findings are attributable to HIV serostatus.

Families Affected by Pediatric Acquired Immunodeficiency Syndrome

This study explores stress and coping among inner-city, ethnically diverse families with human immunodeficiency virus (HIV)-infected children. Caregivers, siblings, and HIV-infected children from 25 families responded to a semistructured interview on the psychosocial impact of HIV. Families were primarily African-American and Latino and from low socioeconomic-status backgrounds. Approximately one third of the children lived with an HIV-positive birth parent, one third with a grandmother, and one third in foster or adoptive care. The majority of caregivers were single mothers who confronted major life events and who were overextended with caregiving responsibilities. Compared with uninfected caregivers, HIV-infected parents reported more isolation and fewer financial and support resources. All children were particularly vulnerable to separations and loss, with uninfected siblings reporting anger and burden from caregiving tasks. Although some families had coping resources, many families might benefit from family-focused mental health services, particularly those that reduce isolation, promote family functioning and provide respite care.

Children of HIV-positive parents: Implications for intervention.

Children of HIV-positive parents: Implications for intervention.