Xu, Tao MD, PhD*†; Wu, Zunyou MD, PhD*; Duan, Song BA‡; Han, Wenxiang BA§; Rou, Keming BA*
Approximately 33 million adults, most of them parents, are now living with HIV worldwide,1 and more than 15 million children have been orphaned by AIDS.2 As improved treatment strategies continue to prolong the lives of parents with HIV, more children will live with a chronically ill parent.3 The most recent estimate indicates that as of the end of 2007, there were approximately 700,000 people living with HIV/AIDS in China.4 Although HIV prevalence among the general population is still relatively low in China, high-prevalence rates have been reported in certain locations and populations.4 Consequently, the situation of children with HIV-infected parents and children orphaned by AIDS has emerged as a serious issue in high-prevalence areas.5
Previous studies from Africa have shown that when a family member has AIDS, expenditure on health care quadruples, food consumption may drop by as much as 41%, savings are depleted, and families often go into debt to care for sick individuals.6 The amount of resources available for a child's education decreases when parents are infected with HIV or die. As a result, children are more likely to dropout of school as tuition fees become unaffordable.7 In addition, HIV/AIDS-related stigma in the classroom may also cause children to stop going to school, decreasing the quality and consistency of school attendance.8 Children affected by HIV/AIDS may receive poorer care and supervision, may suffer from malnutrition, and may not have access to available health services, although there are conflicting data on the associations between nutrition and family HIV/AIDS status.9-11 Affected and orphaned children tend to be traumatized and suffer a variety of psychological reactions to parental illness and death.12,13
The studies described above were largely conducted in African countries and limited data are available from other developing countries, such as China. Unlike Africa, in China, the HIV/AIDS epidemic has been largely driven by intravenous drug users. There are approximately 288,000 drug users living with HIV/AIDS in China, accounting for 44.3% of the country's total number of estimated HIV cases.4 In provinces located along drug trafficking routes, drug use accounts for around 90% of HIV/AIDS cases.4
To date, there have been few studies conducted to explore the lives of children affected by HIV/AIDS in China. In a cross-sectional survey of 251 AIDS orphans conducted in 5 provinces, 61% of children lived with surviving parents and over 15% of children had lost both parents. One-quarter of the orphans did not attend school.14 Another study conducted in Yunnan Province indicated that in 266 randomly selected households with registered HIV-infected drug users, 40% of these children had lost at least one parent. Most of the children resided in a household with a low economic status and a high dependency ratio. Compared with orphans, nonorphans and their families in this study were less likely to receive social support from the community. Orphans and older children were less likely to attend school and more likely to be truant if enrolled in school.5
To address this knowledge gap and provide a basis for intervention planning, a cross-sectional study was undertaken to examine the quality of life of children affected by HIV/AIDS from August 2005 to September 2006 in Longchuan County, Yunnan Province, China, one of the regions most affected by HIV/AIDS.17 In 2006, there were 2718 known cases of HIV, 75% of which were infected via intravenous drug injection. Four townships were selected to participate in the study. These four townships account for most (70%) of the registered HIV cases, and have approximately 80% of all children orphaned by HIV/AIDS in the county. This article presents quantitative results on the schooling, physical health, and interpersonal relationships of these children.
Both qualitative and quantitative methods were used to investigate various aspects of the quality of life of children living in HIV/AIDS-affected families. Results of the qualitative studies have been published elsewhere.15,16 This study was approved by the Institutional Review Board at the National Centre for AIDS/STD Control and Prevention, Chinese Centre for Disease Control and Prevention.
HIV/AIDS-affected families were eligible if they (1) had at least one child aged between 8 and 18 years old, (2) the child was HIV-negative, and (3) the child had at lease one HIV-positive parent or had lost one or both parents to AIDS. Within each household, one child aged 8-18 years old and one caregiver (the person actively involved with the child's daily care) were interviewed.
Two sets of questionnaires were developed to collect information from children and caregivers, respectively.15,16 Except for family sociodemographic characteristics, most questions were comprised of parallel child self-report and caregiver proxy-report formats, with the questions essentially identical and differing only in appropriate language.
Sociodemographic characteristic variables measured included caregiver's age, sex, education, marital status, ethnic group, and child's age and sex. The child's orphan status was identified using terms adopted from UNAIDS/United Nations Children's Fund (UNICEF)/the United States Agency for International Development (USAID).18 Orphans were defined as children under the age of 18 years who had lost one or both biological parents. Children whose parents were both alive at the time of the survey were nonorphans.
Four variables assessed the children's physical health and illness. These included status of child's health during the previous 6 months (very good/good/fair/poor); incidences of illness longer than 3 days in the previous 6 months; duration of any illness in the previous 6 months; and severity of the last illness.
The status of the child's schooling was assessed by investigating school attendance, whether the family received external financial support for education from the government or other sources, and perceived changes in school performance after parental illness or death (became worse/became better/did not change/not sure).
The quality of the child's relationship with the caregiver was measured using 5 questions assessing whether caregivers knew about their child's school performance (yes/no); whether caregivers knew their child's friends (yes/no); whether the child had been informed about their parent's HIV/AIDS status (yes/no); average time caregivers spent with their child; and frequency of child-caregiver communication (always/often/sometimes/never). The peer relationship was measured by 2 questions assessing: (1) whether the child was teased by other children (yes/no); and (2) the change in their relationships with their peers after parental illness (ie, onset of AIDS) or death (became worse/became better/did not change/not sure).
Study participants were recruited with the help of local health care workers who treat HIV-positive patients in the community. Eligible families who agreed to participate in the study met with an interviewer. Informed consent was obtained before the interview and potential participants were advised they could decide to quit the interview at any time if they wanted. For caregivers, written informed consent was obtained, and for children, caregivers provided consent. To ensure confidentiality, no identifiable personal information was collected and only research staff had access to the data.
The questionnaire was administrated by a qualified interviewer in the health care worker's clinic or in the participant's own house, depending on the participant's request. For illiterate participants, the questionnaires were administered under the supervision of a research assistant. Caregivers were interviewed first, after which they were asked for permission to their children being interviewed. If the caregiver agreed, the interviewer talked with the child about the study. The child's verbal consent was obtained and audio-recorded after it was determined that the child understood what he/she was consenting to. Children were given verbal information before completing questionnaires on their own under the supervision of a research assistant.
For categorical variables, data were compiled as frequency and percent and the differences between orphans and nonorphans were compared using chi-square test. When one of the categories is ordinal, Wilcoxon rank-sum test was used. For continuous variables, data were calculated as mean ± SD and the 2 groups were compared by independent t test. The agreement between child self-report and caregiver proxy-report was determined through intraclass correlation coefficient.
During August to September 2006, 126 families with eligible participants were approached. No adult was present at home for 8 families during 3 contact attempts and the remaining 2 families refused to participate in the study, resulting in a final sample of 116 families. One hundred fourteen caregivers and 116 children completed all items in the questionnaires. One caregiver agreed for her child to participate but did not answer the questions herself. Another caregiver was sick at home and could not be interviewed. Among the 116 children, 52 (44.8%) were nonorphans. Twenty-five (39.1%) orphans were living with their parents, 35 (54.7%) with their grandparents, 2 (3.1%) with their uncles and aunts, and 2 (3.1%) by themselves.
Table 1 summarizes the demographic variables of the caregivers and children. No statistically significant differences were found with respect to ethnic group, caregiver's education, child's age, and sex. Caregivers in the orphan group were significantly older (mean = 44.85 years; SD = 13.87) than those in the nonorphan group (mean = 36.94 years; SD = 5.32). Over 60.0% of caregivers in the orphan group were females, whereas 61.5% of caregivers in the nonorphan group were males. Around 40.0% of caregivers of orphans were widowed, which was significantly higher than caregivers of nonorphans (1.9%) (P < 0.001).
Schooling and School Performance
Three-quarters (75.0%) of children were currently attending school (Table 1). This rate is lower than the provincial (96.2% in 2004) and national (98.7% in 2005) level. No significant difference was found for school attendance rates between orphan groups. Further analysis showed that the school attendance rate was 93.3% (56/60) among children eligible to receive primary school education, and 53.6% (30/56) among children eligible to receive junior middle school education. In terms of school performance, 12% percent of children reported a drop of school performance after parental illness or death. More orphans received schooling support from the governments or other organizations (63.8%) than nonorphans (50.0%), but the difference was not statistically significant (P = 0.74).
Health and Illness
Table 2 reports the health and illness of children by orphan status, both for child self-report and caregiver proxy-report results. No statistically significant differences were found for health and illness between the 2 groups. Approximately 60% of children reported that their health was very good during the previous 6 months. Over one-third (36.2%) of children reported that they had been ill for more than 3 days in the previous 6 months, with an average of one episode of illness. Among those children who had been ill in the previous 6 months, 47.6% reported that they had to take medication and stay at home. Orphans reported less serious illnesses than nonorphans but this was not statistically significant. Caregivers of nonorphans reported more frequent illnesses than orphans and more orphans were hospitalized during the latest illness than nonorphans, but the differences were not statistically significant.
Family and Peer Relationships
One-third (33.6%) of children reported that they had been informed about their parent's HIV/AIDS status. Twice as many orphans (43.8%) as nonorphans (21.2%) were informed. Approximately 60.0% of children believed that their caregivers knew about their school performance and three-quarters of children believed that their caregivers knew their friends. No significant difference was found between orphans and nonorphans. However, more nonorphans' caregivers reported knowing about their child's school performance than orphan caregivers. In terms of child-caregiver communication, orphans reported communicating less with their caregivers than nonorphans (P = 0.04), whereas no significant difference was found for the caregiver proxy-report result (P = 0.76) (Table 3).
Eleven percent of orphans reported that their relationships with peers became worse after the illness or death of their parents, whereas 14% of orphan's caregivers reported that their child's peer relationships became worse after parental illness or death. One-quarter of orphans reported that they were teased by others, which was significantly higher than nonorphans (P < 0.01). Caregivers of orphans also reported significantly more teasing than those of nonorphans. It should also be noticed that caregivers tended to report more teasing occurrences than the children did.
Table 4 shows the correlation between child self-report and caregiver proxy-report for some variables. Agreements are better on average for physical and illness items than personal association items. Orphans and their caregivers showed better agreements on most items than nonorphans and their caregivers.
In this study, the overall school attendance rate among school-aged children was lower than the provincial and national levels, similar with findings from previous studies.5,14 However, no difference was noted for school attendance rate between orphans and nonorphans and is inconsistent with previous studies conducted in other countries.19-21 One possible explanation for this finding is that after the implementation of the Regulations of AIDS Prevention and Treatment (Decree of the State Council of the PRC No. 457, issued in 2006), families with children orphaned by HIV/AIDS were more likely to receive free schooling from the local government or other organizations. Another may be due to the increased community empathy, especially in some minority communities in China, for families with AIDS orphans.5 Neighbors may provide assistance to AIDS-affected families, including small amounts of money, food, clothes, medicine, and help with housework.16 This may partially contribute to the equality seen in the economic status between orphan and nonorphan households.13
Although there is a lack of direct empirical data on the impact of being orphaned or made vulnerable on the performance of children in school, it has been suggested that these children might perform poorly in school.22 AIDS-affected children face barriers to education over and above the effects of poverty.23 These barriers include their need to care for sick parents24; emotional scarring related to parental death25; and discrimination within classrooms and the community.8 For orphaned children, school-work is most likely supervised by an older sibling, or to be unsupervised, or less likely to be supervised by a caregiver,26 which can also contribute to poorer school performance. Our findings indicated a 12% drop in self-reported school performance after parental illness or death. Appropriate interventions should be developed to promote the school performance of these children.
Regarding the association between family HIV/AIDS status and children's physical health, participants reported no significant differences in terms of severity or frequency of illness between orphans and nonorphans. One possibility may be that the data we collected were based on the participant's self-report of the general health, and no health indicators were measured. From our research, it was clear that most orphans were living with their grandparents and had heavier burdens of housework and farm chores than nonorphans. Orphans, compared with nonorphans, may feel greater responsibility to their families to do well at school and to do their household chores. Therefore, orphans might be less likely to report minor illness than nonorphans. An additional explanation may be that the small sample size was not powerful enough to detect a difference between the 2 groups. More research is therefore needed to explore the impact of a family HIV/AIDS status on children's physical health.
When HIV/AIDS begins to affect a household, family relationships provide the most immediate source of support. Consistent with findings from other countries,27,28 the vast majority of children orphaned by HIV/AIDS in China continue to live with the surviving parent or their extended family. As our study shows, caregivers were well aware of their children's school performance and friends. However, both children and caregivers reported a low frequency of child-caregiver communication. Nonorphans reported more communication with caregivers than orphans. One explanation may be that many orphans silently bear the grief of parental loss and do not tell their caregivers; some believe that it is their responsibility to avoid mentioning it and making the family members sad.16 Children who are able to communicate freely with their parents may be more likely to view their family positively and report fewer psychological problems.25 Research has also shown that a strong positive relationship between parents and children is significantly related to lower rates of risk behaviors, including those associated with HIV infection.29,30 Therefore, strategies to increase communication between affected children and their caregivers are needed.
According to the transactional theories of child development, peers play an important role in influencing children's cognition, behavior, and general personality characteristics.31 Parents' influence tends to decrease as children enter middle childhood and adolescence.32 The current study found that parental illness or death negatively affected children's relationships with their peers. It could be that children may suffer from discrimination or feel self-stigmatized due to parental HIV/AIDS, which results in self-isolation and impairs their relationships with their peers. Also, children who dropped out of school might feel lonely and isolated because the number of friends and the frequency of contact decreases. Peer support should therefore be incorporated in intervention programs.
Moderate agreement was found for variables between self- and proxy-report. To our knowledge, no such data have been previously reported. Agreement was better for physical health than for interpersonal relationships. One possibility may be that teenaged children are more likely to rebel against adults and are thus less likely to communicate with their caregivers, especially in terms of talking about their friends and any emotional problems they encounter. In addition, our results indicated that agreement was better between orphans and their caregivers than that of nonorphans and their caregivers. An explanation may be that after the tragedy of parental loss, caregivers of orphans may be more concerned about the children in their care compared with caregivers of nonorphans. This suggests the need to measure both the child's and the caregiver's perspectives when evaluating children's health status.
Results of this study may be limited by its generalizability to other families affected by HIV. For instance, the current study may be more applicable to an older population of children due to the literacy requirement. Also, information on nonparticipants was not available, In addition, all participants came from communities with a high ratio of drug use and some were ethnic minorities, so the findings of this study may not be applicable to other areas of China where the HIV epidemic and the ethnicity of the general population is different. Despite these disparities, the findings can still apply to most affected children and inform the development of intervention programs that promote care and support of children affected by HIV/AIDS.
Authors are grateful to all the children and their caregivers who participated in this study. Our thanks also go to our collaborators at Longchuan County CDC and to Naomi Juniper and Adrian Liau for editorial assistance.
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