Preschoolers' Perceptions of Parental Roles in Single-Earner and Dual-Earner Families

Preschoolers were interviewed and parents were surveyed to examine the division of labor for household management and caregiving tasks in single-earner and dual-earner families. Children with nonemployed mothers underestimated mother's responsibilities both in home management and in child care. They also believed their parents shared more caregiving tasks than their parents reported sharing. Children in both family types believed parents shared more housework responsibilities than parents acknowledged sharing. Daughters in dual-earner families believed their fathers engaged in more caregiving than parental reports indicated.     

'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.     

Mothers with HIV/AIDS and their children: disclosure and guardianship issues

For many mothers living with HIV/AIDS, whether, when, and how to disclose their HIV diagnosis to their children and arranging for future care are important although agonizing issues. Due to the increasing number of children who lose their mothers to AIDS and the dearth of empirical information about them, these issues are increasingly important to research. This study of 188 HIV-positive mothers and their 267 children of minor age in New York City revealed that only half the mothers had disclosed their HIV diagnosis to at least one of their children and only 57% had made formal plans for the children's care. As expected, older children were more likely to be informed than younger children. Contrary to some previous research, maternal disclosure was not related to ethnicity, advanced illness, improved psychological well-being, or greater or more satisfying social support resources. Implications for future research and provision of services to this group of women are discussed.     

Young carers in South Africa: tasks undertaken by children in households affected by HIV infection and other illness

‘Young carers’ are children who take on adult responsibility in response to familial illness. South Africa’s high disease burden, limited health care capacity and cultural notions of children’s familial duty suggest a large population of ‘young carers’ in this country. This study aims to explore the nature of responsibility among children affected by illness in deprived South African communities. A total of 349 children and adolescents aged 10–18 years in illness-affected households in the Western Cape province were recruited via community- and school-based convenience sampling. Data about their daily life, responsibilities and the impact of familial illness were collected via semi-structured interviews. Caring tasks involving intimate contact and medical treatments were relatively common among children in the sample, and nearly all children were engaged in some type of responsibility, from caring tasks to housework, childcare and earning money. Children frequently indicated their responsibilities constituted a substantial burden. Responses suggested a tension between duty to care and appropriateness of intimate contact between parents and children required for some caring responsibilities. Children often linked their tasks burden to familial illness, though further quantitative research is needed to identify the drivers of child responsibility.     

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.     

Care and secrecy: Being a mother of children living with HIV in Burkina Faso

Home care has become a central component of the response to the HIV/AIDS epidemic, displacing caregiving work onto women. While increasing interest has been paid to HIV/AIDS care with a focus on ailing adults and orphan foster care, the issue of caring for children living with HIV has received little attention in the social sciences. Based on ethnographic material gathered in Burkina Faso between November 2005 and December 2006, the aim of this paper was to gain understanding of women who mother and care for children living with HIV in resource-limited countries. The study involved participant observation in community-based organizations in Burkina Faso and semi-structured interviews with 20 women mothering HIV-positive children as well as 15 children infected with HIV, aged between 8 and 18 years. In daily care mothers face many great challenges, ranging from the routine of pill-taking to disturbing discussions with children asking questions about their health or treatment. The results also show how HIV/AIDS-related stigma adds an additional layer to the burden of care, compelling mothers to deal with the tension between secrecy surrounding the disease and the openness required in providing care and receiving social support. As mothers live in fear of disclosure, they have to develop concealment strategies around children's treatment and the nature of the disease. Conversely, some mothers may share their secret with kin members, close relatives or their children to gain social support. As HIV/AIDS care is shaped by secrecy, these findings shed light on mothers' isolation in child care within a context of changing patterns of family bonds and lack of formal psychosocial support addressing child-related issues. Finally, women's engagement in child care invites us to look beyond the essentialist approach of women's vulnerability conveyed by international discourse to characterise the situation of women facing the HIV/AIDS impact.     

Co-located Substance Use Treatment and HIV Prevention and Primary Care Services,New York State, 1990–2002: A Model for Effective Service Delivery to a High-Risk Population

The New York State Department of Health (NYSDOH) AIDS Institute (AI) began an initiative in 1990 in collaboration with the Office of Alcoholism and Substance Abuse Services (OASAS) to colocate HIV prevention and clinical services at drug treatment clinics. In 1990, the initiative began funding drug treatment programs to provide HIV counseling, testing, and prevention services. HIV primary care was added the following year. Program implementation and development are described. An analysis is included of HIV counseling and testing data for the period 1990–2002 and quality of care data for five standardized quality measures with comparisons to data from other clinical settings. In the first 13 years of the initiative 168,340 HIV-antibody tests were conducted including 52,562 tests of injection drug users (IDUs) identifying 14,612 HIV-infected persons; the seroprevalence was 8.68%. By the end of 2000, the HIV primary care caseload peaked at 3,815 patients. Quality of primary medical care services among participating drug treatment programs has consistently matched or exceeded that provided in more conventional health care settings such as the hospitals and community health centers that were used as a basis for comparison. Colocating HIV primary care within substance use treatment is an effective strategy for providing accessible high-quality HIV prevention and primary care services. Rothman is with the Bureau of HIV Ambulatory Care, AIDS Institute, New York State Department of Health, Albany, New York, USA; Rudnick and Slifer are with the Substance Abuse Unit, AIDS Institute, New York, NY, USA; Agins is with the Office of the Medical Director, AIDS Institute, New York, NY, USA; Heiner is with the Karl Heiner Statistical Consulting, Ltd., Schenectady, New York, USA; Birkhead is with the AIDS Institute, Albany, New York, USA.     

Household and community HIV/AIDS status and child malnutrition in sub-Saharan Africa: evidence from the demographic and health surveys

This paper examines the extent to which under five children in households or communities adversely affected by HIV/AIDS are disadvantaged, in comparison with other children in less affected households/communities. The study is based on secondary analysis of the Demographic and Health Survey (DHS) data collected during 2003-2008 from 18 countries in sub-Saharan Africa, where the DHS has included HIV test data for adults of reproductive age. We apply multilevel logistic regression models that take into account the effect of contextual community/country level HIV/AIDS factors on child malnutrition. The outcome variable of interest is child undernutrition: stunting, wasting and underweight. The results suggest that across countries in sub-Saharan Africa, children whose mothers are infected with HIV are significantly more likely to be stunted, wasted or underweight compared to their counterparts of similar demographic and socio-economic background whose mothers are not infected. However, the nutritional status of children who are paternal orphans or in households where other adults are HIV positive are not significantly different from non-orphaned children or those in households where no adult is infected with HIV. Other adult household members being HIV positive is, however, associated with higher malnutrition among younger children below the age of one. Further analysis reveals that the effect of mothers' HIV status on child nutritional status (underweight) varies significantly across communities within countries, the effect being lower in communities with generally higher levels of malnutrition. Overall, the findings have important implications for policy and programme efforts towards improved integration of HIV/AIDS and child nutrition services in affected communities and other sub-groups of the population made vulnerable by HIV/AIDS. In particular, children whose mothers are infected with HIV deserve special attention.     

儿童艾滋病病毒感染者/病人监护人生活质量评价

目的评价安徽省儿童艾滋病病毒感染者／病人（简称艾滋病儿童）的监护人的生活质量,为拟定干预策略提供依据。方法采用普查方法,使用世界卫生组织生活质量测定简表（WHOQOL-BREF）对安徽省所有艾滋病儿童的监护人进行问卷调查。结果共有71名艾滋病儿童的监护人参加了调查,其中儿童母亲23人（32．4％）,父亲29人（40．8％）,祖父母10人（14．1％）,其他9人（12．7％）。年龄最小25岁,最大75岁,平均42．04±12．10岁。调查对象在总体感觉、健康满意度、生理生活质量、心理生活质量、社会生活质量和环境生活质量等6个方面的平均得分分别为2．37、3．06、22．48、15．22、9．42和21．21分,经转换后分别是34．15、51．41、55．28、38．40、53．46和41．29分。4项领域合计为188．44分。同生活质量有关的因素包括性别、年龄、文化程度、职业、婚姻状况、儿童人数、个人收入、健康状况、艾滋病感染情况、儿童两周患病情况等。结论安徽省儿童艾滋病病毒感染者／病人监护人的生活质量受到严重影响,亟需研究和采取适宜措施进行干预。     

New York lawsuit seeks release of newborns' HIV test results

The Association to Benefit Children (ABC), a New York advocacy group, has sued to force the state to inform mothers of the HIV test results of their newborn infants. The suit, filed in March, 1995, in the Supreme Court for New York County, asked the court to declare unconstitutional the state's policy of testing newborns without disclosing the test results to their mothers. Since 1987, the New York Health Department has been routinely testing all newborns for evidence of HIV antibodies. However, results are not divulged because the testing is intended to assess the extent of HIV infection in a given area or demographic group. The suit alleged that the blind HIV testing procedure denies babies their right to equal protection under the Fourteenth Amendment to the U.S. Constitution and Article 1, Section 11 of the state constitution. According to the suit, early diagnosis is essential as HIV infection generally develops faster in infants than in adults. The suit also sought testing, counseling and treatment of all at-risk children in the foster care system.     

Pediatric AIDS: The professional responsibilities of child caregivers to children and families

Information about the nature and control of AIDS is now available to the general public. Policies regarding the physical care of AIDS victims are also available to health care professionals. Unfortunately, information about professional issues like acceptance of AIDS victims, confidentiality, and family support is less available. One audience in particular need of such information is child caregivers who, in the years ahead, can expect to see an increasing number of children who are infected with the HIV virus. In this paper, the author addresses the professional responsibilities of child caregivers who care for children with AIDS or HIV infection.     

Challenges associated with increased survival among parents living with HIV

OBJECTIVES: This study examined sociodemographic and psychosocial factors that predict survival among parents living with HIV. METHODS: Parents with HIV (n = 307) were recruited from 1993 to 1995 in New York City and repeatedly assessed. Survival was monitored among the sample (81% mothers; 45% Latino, 34% African American). RESULTS: Over a median period of 28 months (range = 0-53 months), 44% (n = 135) of the parents died. Having an AIDS diagnosis and being African American were associated with earlier death. Sex, age, and financial status were not related to survival. Parents who survived had initially higher levels of anxiety that decreased over time; in contrast, parents who died reported initially lower, but constant, levels of anxiety over time. After HIV diagnostic status was controlled for, it was found that parents who reported having more children, using a coping style of seeking social support, and being sexually active at baseline survived longer. CONCLUSIONS: The counterintuitive findings raise hypotheses regarding the role of change and responsibilities in the survival of parents with HIV.     

Stigma, fatigue and social breakdown: exploring the impacts of HIV/AIDS on patient and carer well-being in the Caprivi Region, Namibia

It is generally assumed that caring is a substantial burden upon households afflicted by HIV/AIDS. However, as a 'private' household responsibility, little is known about the experiences of either those who provide the care, or those receiving care, despite the fact that the process may extend over several years and may have a greater impact upon the livelihood security and well-being of the household than the actual death of the ill person. Drawing upon data collected through solicited diaries, this paper explores how illness and the daily and long-term duties of caring amongst a sample of households in the Caprivi Region of Namibia impacts upon the physical and psychological well-being of ill people and their carers. While optimism and enhanced well-being were recorded during periods of illness remission, AIDS-related illnesses invariably result in periods of sickness and dependency. This results in disempowerment and lowered self-esteem, and decreased well-being amongst ill people. This paper argues that the increasing dependency of the ill person, widespread pressure to maintain household integrity through 'seeing for yourself', i.e. being self-sufficient, or at least contributing to reciprocal support networks, and the stigma attached to HIV/AIDS can result in considerable intra-household tension and breakdown of key social support networks.     

"I know what I'm facing"

By May 1991, 6700 reported cases of AIDS existed in Zimbabwe and many included those in the labor force. Around 25% of the cases were infants. Moreover about 500,000 may actually have been HIV seropositive with an estimated 90% being of working age for an HIV seroprevalence of about 10% in the labor force. 50% of the 10 million inhabitants of Zimbabwe were 15 years old. In 1990, 18% of 1000 pregnant women screened in Harare were HIV positive. Furthermore, 51% of patients screened at an urban genitourinary clinic in 1990 tested HIV positive whereas, in 1987, only 18% tested HIV positive. The extended family can no longer cope with the problems created by the AIDS epidemic, so the community must support HIV positive people and AIDS patients. For example, grandparents or other relatives must often take in the children of parents who have died from AIDS. Indeed, the emotional turmoil in learning of one's own or a loved one's HIV infection can be overwhelming. The Ministry of Health has founded the AIDS Control Programme which includes counseling as an important component. This division trains health workers in counseling individuals and families afflicted with AIDS and provides pamphlets for primary health care workers. 1 thing that it emphasizes is that clients need time to deal with the situation. Yet many health workers do not have the time. More and continued integration between social workers and health providers is needed. A woman from the AIDS Counselling Trust suggests that counseling for mothers of infants with AIDS can begin with a small group in hospital wards, such as what has been done in Mutare, Zimbabwe. Further self help groups can be connected with clinics. Zimbabwe can also go the way of Zambia and provide home based care services and mobile units.     

Stigma,fatigue and social breakdown: Exploring the impacts of HIV/AIDS on patient and carer well-being in the Caprivi Region,Namibia

It is generally assumed that caring is a substantial burden upon households afflicted by HIV/AIDS. However, as a ‘private’ household responsibility, little is known about the experiences of either those who provide the care, or those receiving care, despite the fact that the process may extend over several years and may have a greater impact upon the livelihood security and well-being of the household than the actual death of the ill person. Drawing upon data collected through solicited diaries, this paper explores how illness and the daily and long-term duties of caring amongst a sample of households in the Caprivi Region of Namibia impacts upon the physical and psychological well-being of ill people and their carers. While optimism and enhanced well-being were recorded during periods of illness remission, AIDS-related illnesses invariably result in periods of sickness and dependency. This results in disempowerment and lowered self-esteem, and decreased well-being amongst ill people. This paper argues that the increasing dependency of the ill person, widespread pressure to maintain household integrity through ‘seeing for yourself’, i.e. being self-sufficient, or at least contributing to reciprocal support networks, and the stigma attached to HIV/AIDS can result in considerable intra-household tension and breakdown of key social support networks.     

Protecting the weakest link: A proposal for universal,unblinded pediatric HIV testing,counseling and treatment

This paper argues that a system of unblinded, universal testing, counseling and treatment for pediatric HIV should be implemented immediately in New York State. First, it argues that New York's health and social services bureaucracies, in conjunction with special interests that do not represent the interests of children, have resisted efforts to have infants tested and treated for HIV. Second, the paper suggests that the campaign against universal infant screening and treatment reflects our society's continuing, calculated decision to ignore the complexity of the HIV/AIDS epidemic. Third, the paper outlines a plan for a prompt and comprehensive system of HIV testing, counseling and treatment for infants and children, as well as for their parents and families, who are HIV-positive.In the process of articulating the above positions, the paper documents the failure of universal blinded infant HIV screening in New York since 1987. It further explores the inadequacies of the proposed efforts by state and city regulatory authorities to improve the testing and counseling available for pediatric HIV. Although encouraged by New York State's recent move aggressively to test and treat HIV-positive infants and children in foster care, the paper argues that this effort must be expanded to apply to the entire newborn population. Finally, the paper examines in detail the limitations of testing and counseling provided to children in the foster care system.An earlier version of this paper was presented as part of the symposium, Turning Points: Key Policy Debates on HIV in the Inner City, held on April 8, 1994, at the State University of New York, Health Science Center at Brooklyn.     

Externalizing Behaviors among Children of HIV Seropositive Former and Current Drug Users: Parent Support Network Factors as Social Ecological Risks

Children affected by their parents’ dual drug use and HIV/AIDS face considerable challenges to their psychosocial development, including parent dysfunction and foster care placement. While HIV/AIDS may increase parents’ mobilization of social support, their drug use may restrict who is available to help them, with potential implications to the adjustment of their children with whom they remain in contact. This study sought to identify dually affected children’s living situations, and parent and parent’s support network factors as correlates of children’s externalizing problem behaviors. An urban community sample of 462 HIV seropositive, current or former drug-using parents were queried about their children aged 5–15 years old. One hundred ninety-four children were reported by 119 parents. The outcome was children’s externalizing behaviors of ever having been suspended or expelled from school, criminal-justice system involvement, or illicit drug or heavy alcohol use. Independent variables included kin and drug users in parent’s support network. Generalized estimating equations were used to adjust for the potential correlation of children of the same parent. Among parents, 63% were mothers, 57% current opioid or cocaine users, 85% were African American, 35% had AIDS or CD <200, and 53% had high depressive symptoms (CES-D ≥ 16); median age was 38. Among children, median age was 12; 23% lived with the nominating parent, 65% with other family, and 11% in non-kin foster care. While only 34% of parents reported child custody, 43% reported daily contact with their child, and 90% reported high emotional closeness. Parents reported externalizing behaviors among 32% of the children. Logistic regression indicated that externalizing behavior was positively associated with parent’s physical limitations and proportion of illicit drug users in parent’s support network. A significant interaction was found indicating that the effect of parent’s support network-level drug use was greater for children living with versus not living with the parent. The model adjusted for parent’s current drug use and depressive symptoms, which were not significant. Results indicate that while only a minority of these dually affected children lived with the parent, the parents’ physical limitations and embeddedness in drug using support networks, particularly if living with their children, was associated with the children’s maladjustment. It is plausible that these factors interfere with parenting, expose the children to conflict or adverse social influences, or obligate children to assume caregiving for their parent. While dually affected children’s contact with their parents may have important benefits, results suggest it presents ongoing needs for intervention with the children, their parents, and caregivers. Knowlton, Wissow, and Latkin are with the Department of Health, Behavior and Society, Johns Hopkins University, Bloomberg School of Public Health, Baltimore, MD, USA; Buchanan is with the Department of Mental Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA; Pilowsky is with the Departments of Epidemiology and Psychiatry, Columbia University, New York, NY, USA.     

Can Prenatal Care Impact Future Well-Child Visits? The Experience of a Low Income Population in New York State Medicaid Managed Care

To examine the association between maternal characteristics and care patterns and the subsequent utilization of well–child visits in a low income population in New York State (NYS). We analyzed Medicaid managed care birth data from 2004 to 2005 linked to an administrative database to obtain information on preventive well-care visits for the child. The outcome variable was whether the child had five or more well-child visits (WCVs) in their first 15 months of life. Of the 101,461 children in this study 67% had received five or more well-child visits by 15 months of age. This varied by region with a lesser proportion of children receiving well-child visits in New York City (NYC) and a higher proportion in the rest-of-state. Children born to mothers with intensive and adequate prenatal care were significantly more likely to have the necessary well-child visits. Foreign born women were more likely than US born women to bring their children in for well-child visits across all racial and ethnic groups. This study indicated that women who received adequate prenatal care were more likely to bring their children to well-child visits even after adjusting for maternal and infant characteristics. Maternal birthplace modified the association between race and well-child visits. The black-white disparity typically seen in WCVs in the United States was not found in NYC among children of US born women in Medicaid managed care.     

New York to let mothers obtain results of infants' HIV tests

In March of 1995, the Association to Benefit Children (ABC) filed suit to ask the Supreme Court of the State of New York to overturn the State's practice of testing newborns for HIV but not informing the mothers of the test results. This practice, known as blind screening, was initiated to assess the incidence and prevalence of HIV in the State. Since 1987, the New York Health Department has been screening all newborns for evidence of HIV antibodies; positive test results were not disclosed to the baby's parents or legal guardians. New York Governor George Pataki and Attorney General Dennis Vacco announced the settlement of the lawsuit on October 10, 1995. Gretchen Buchenholz, director of the ABC, explained that under the new policy, doctors would be required to advise parents and guardians of the availability of test results. AIDS advocates argue that required testing of newborns amounts to mandatory testing of all pregnant women.