There are an estimated 650 000 people living with HIV/AIDS (PLHA) in China . HIV infection impacts not only PLHA but also their whole family . Given the family-oriented structure of Chinese society , HIV can have a devastating effect on Chinese families. Many PLHA are parents and caregivers who are supposed to attend to the needs of their child; they have to cope with their own physical health symptoms, complex medication regimens , stigma , and fear of AIDS-related death, and must also care for their families [6,7]. The psychological burden and stress affect their overall mental health, and depression is common among parents and caregivers as they struggle with financial limitations . Many caregivers find that they can no longer work as the disease progresses and their health deteriorates, and unemployment leads to extreme economic hardships .
HIV can also have an effect on relationships between family members. Chronic illness in the parent can change family roles causing anger or guilt. Family members can become isolated . The ability of HIV-positive parents and caregivers to care for their children is also impaired, as poverty induced by HIV/AIDS increases the risk of illness and death among children .
HIV/AIDS can also affect children's normal childhood. Children from families living with HIV/AIDS often have to deal with psychosocial stress, an ill caregiver, reduced parenting capacity, a shift in family structure, financial deprivation, and stigma and discrimination. These challenges can lead to emotional and behavioral changes in children, such as depression and delinquency. Previous studies have documented that children from HIV-affected families are more prone to developing disorders , such as social adjustment and attention problems , and depression .
The goal of this pilot study was to understand the needs of children and families affected by HIV/AIDS. The study provides a first look at relationships inside a household with caregivers and children affected by HIV/AIDS in China. We believe that life-threatening illnesses negatively impact caregiver's quality of life and family relationships, leading to unwanted behaviors and poor health in their children.
The study was conducted in Anhui province, a region in China with a high prevalence of HIV/AIDS. In 2005, it was estimated that there were between 10 000 and 49 999 HIV infected people living in this area . Over two-thirds of the existing HIV infections in Anhui were caused by paid plasma donation [16,17]. As the spread of HIV through plasma donation primarily occurred in the early 1990s, many HIV-infected individuals in this province currently have children aged 6-18.
This study combined quantitative and qualitative research methods [18-20]. The study was approved by the Institutional Review Boards (IRB) of the University of California, Los Angeles (UCLA) and the Anhui Center for Disease Prevention and Control (CDC).
The qualitative study involved five focus groups conducted separately with: (1) local health workers; (2) local schoolteachers; (3) village leaders; (4) PLHA; and (5) caregivers of children from families affected by HIV/AIDS. Each group consisted of six to nine people.
Recruitment of local health workers was done in cooperation with local Chinese health officials. Village leaders were referred by county and township administrative officials, and local schoolteachers were referred by village leaders. Participants for the PLHA and caregiver focus groups were recruited from the clinics or hospitals where they normally received primary care services. Only those PLHA that disclosed their status to the community were asked to participate in the focus group. Some of the PLHA and caregivers involved in the study were referred by participants already enrolled in the study. Field staff obtained informed consent from all participating members prior to the discussion. Each participant received an incentive of 40 Yuan (US$5) in cash for participation in the focus group.
All focus groups were transcribed and crosschecked by two different staff members for quality control. Transcripts were analyzed to identify the most frequently occurring themes and grouping them in the context of other information given by the respondents.
The study population for the quantitative study consisted of caregivers of children aged 6 to 18 years from families affected by HIV/AIDS. They were HIV positive or negative parents or grandparents. Unlike the qualitative study, the quantitative study participants were not required to have disclosed their family HIV status to the community. Children were considered to be affected by HIV/AIDS if one or more family members had died from or was living with HIV/AIDS. Informed consent was obtained from all participants prior to the interview. Study participants were given 56 Yuan (US$7) for participation.
Each consenting caregiver took part in a face-to-face interview lasting approximately one hour. The semi-structured interview contained 147 questions that assessed the caregivers' and children's demographics, caregiver's quality of life, family relationships, and the children's school performance, health and nutrition. Caregiver's quality of life and family relationships were measured using the question ‘how would you rate your quality of life?’ and ‘how are current family relations?’, respectively. Participants could choose from 1 (very poor) to 5 (very good). A total of 154 caregivers participated in the interviews between December 2005 and June 2006. The data were analyzed using SAS statistical software (version 9.1; SAS Institute Inc., Cary, North Carolina, USA). Descriptive analyses were conducted for caregiver, family and children's characteristics, respectively.
Qualitative study findings
Four major themes were identified: (1) HIV-related stigma isolates families and children; (2) Poor economic conditions make coping more difficult; (3) Children's education and school performance are in jeopardy; and (4) Children's health and nutrition are compromised.
HIV-related stigma isolates families and children
HIV-related stigma and discrimination are important issues for HIV/AIDS-affected families. Discrimination is directed towards both PLHA and their family members. Sometimes children from HIV/AIDS affected families have difficulty understanding why people treat them badly. They feel different from other children, leading to avoidance and isolation.
“If a PLHA borrows utensils from people, after they return the utensils, people will discard the utensils without the PLHA's knowledge.” - Village leader
“People ask their children to stay away from the children from HIV/AIDS families…some people transferred their children to a different school because they don't want their children to study together with children from HIV/AIDS families.” - Caregiver
“Sometimes children don't look happy when they come back from school because they feel that they are different from other kids…The children stay at home all day long because they are afraid of being discriminated against.” - PLHA
Poor economic conditions make coping more difficult
Many HIV-affected families do not have a stable income, and often there are no family members who can work to support the family. Most of these families have a much lower standard of living than households not affected by HIV.
“The living conditions are poor. Both parents are HIV positive. Nobody earns any money. The living condition is so much worse compared to unaffected families.” – PLHA
[HIV/AIDS-affected children's] parents can't work, so their quality of life is worse than unaffected children. - Schoolteacher
Children's education and school performance are in jeopardy
Many HIV/AIDS-affected children cannot continue to go to school because their families cannot afford school. Their families need them at home or need them to work to contribute to the family's income. For those children who can attend school, their family situation makes it difficult for them to perform well.
“…sometimes they have to cut class to take care of their sick parents and do the housework, so their studies are affected.” – Caregiver
“Some of the children's grades are affected by their family. Some dropped out of school in junior high because they have to make money for their parent's treatment.” - Village health worker
Children's health and nutrition are compromised
Most HIV/AIDS-affected children do not have enough nutritious food and suffer from malnutrition. They mainly eat rice, noodles, and pickles because of poverty. Their health and nutrition are often ignored.
“The [HIV/AIDS-affected] children's nutrition is not as good as the [unaffected] kids. The parents have to save money for treatment, so they have no money left to buy food for the kids.” - PLHA
“For example, a ten-year-old child's parents were both dead and he got hepatitis, but he had no money to see a doctor. He had to live by himself and take care of himself.” - Caregiver
Quantitative study findings
The caregiver and family's demographics are presented in Table 1. Most caregivers in this study were parents, with a mean age of 44.3 years. Caregivers had very low levels of education, and almost half of the caregivers were illiterate (48%). The majority of caregivers were married (77.3%), were farmers (73%) and were HIV-positive (80%).
Most of the interviewed caregivers were not satisfied with their quality of life, with 53.9% reporting that their quality of life was ‘very poor’ or ‘poor’, 45.5% reporting they were dissatisfied or very dissatisfied with their health status and 51.9% reporting that they very often or always felt negative feelings such as sadness, despair, anxiety and depression.
Most families (66.9%) had two to three children and 21.4% had one child. Nearly 40% of the participating families had one HIV-positive parent and one HIV-negative parent, while in 37.3% of families both parents were HIV-positive. In 15.0% of families, at least one parent had died. While the average annual net income per person in Anhui Province was 2641 Yuan (US$330) in 2005 , the families in this study only had an average reported annual income of 606 Yuan (US$75.8).
The majority (87.7%) of the interviewed participants rated their family relationship as ‘poor’ or ‘very poor’. Most of them reported that family relationships had not changed because of HIV. The percentage of change for the worse (14.3%) was greater than that of change for the better (9.1%) because of HIV. Less than half (47.4%) of the caregivers had disclosed their or their family member's HIV status to others. Although disclosing HIV status to a child is difficult, 81% of caregivers had disclosed this information to their child.
Table 2 summarizes the basic characteristics of HIV/AIDS affected children in this study. Slightly more than half the children were male (55.8%) and the mean age was 13. Children between the ages of 6-12 represented 26% of the sample. Only two (1.3%) of the children in this study sample were HIV-infected.
Although all the children were at school age, 11.7% of the children were not attending school. While only 16.9% of caregivers reported poor performance in school, 34.0% of the children had repeated grades. About one-fifth (19.4%) were reported to be less physically active than other children. More than two third (68.9%) of the caregivers rated the children's health status as ‘good’ or ‘excellent,’ however, 31% of the children had not eaten fruit in the past month and 14% of the children had no protein in their diet. Some children went hungry because there was not enough food.
China is a strongly family-oriented society . Thus HIV could have a severe impact on the stability of families and on the next generation. This pilot study used a mixed method to examine the impact of HIV/AIDS on family and children in China. Both qualitative and quantitative studies demonstrated that most of the HIV/AIDS affected families are living in poverty. Poverty deprives people of access to health services, schooling, information and education. When HIV appears in an already impoverished family, there are limited means for response, so the impact is severe and the pressures and pain of poverty are exacerbated. PLHA and family members also have to deal with societal discrimination and isolation, which can be tremendous psychological burdens.
Aside from the impact HIV has on individual family members, HIV/AIDS also poses special challenges for families to function in accordance with this cultural expectation, making it difficult for HIV-affected families to hold together as a unit. In this study, almost 90% of the caregivers rate their relationships with their family members as poor or very poor, but only a small percent indicated a change due to HIV. Apparently the majority of the families in this poor area of China suffer from poor family relationships. The impact of HIV on the family radiates to individual family members including the PLHA who feel shame and, subsequently, less integrated into his/her community.
The struggle to survive everyday overshadows attention and concern about children's education. In Chinese families, the typical role of an adult is to be an independent, productive person who cares for children and aging parents. Chronic illness reverses this culturally-prescribed role, requiring the children to care for the ill adult . Children become the decision makers, which may explain why most of the caregivers disclose their HIV serostatus to their children. When parents are not capable of contributing to housework or providing a stable income for the family because of chronic illness, further burden rests on the children. The loss of support from an adult exposes children to the distress which results from lack of affection, insecurity, fear, loneliness, grief or despair. More importantly, children's nutrition and health is ignored, which limits the possibility of a successful childhood; in our study, one third of the HIV/AIDS affected children had to repeat a grade. Poor performance in school will in turn affect their future as adults.
There are some limitations to this study. It was conducted in a poor area with a large proportion of former plasma donors. It may not be appropriate to generalize the results from these HIV-positive individuals to families with members who were infected through other transmission routes, or other areas with different economic situations. In addition, only families that had children between the ages of 6 and 18 were included in the study. Families with children younger than 6 may face different challenges and HIV/AIDS may play a different role in family member's quality of life and family functioning.
The results of this study have implications for future HIV interventions in China. Programs and interventions that address the challenges that PLHA and their families face, provide information, build families' coping skills, form supportive local community networks, and that build and strengthen family relations, especially between adult and child are needed. More attention should be paid to parents living with HIV and the healthy development of their offspring.
We wish to thank the staff at Anhui CDC and Funan CDC for their assistance in data collection and data management.
Sponsorship: This paper was completed with the support of the Center for HIV Identification, Prevention and Treatment Services (CHIPTS) grant P30MH58107, and the UCLA AIDS Institute, Diana Princess of Wales Memorial Fund, and UCLA Program in Global AIDS Prevention and Policy Research grant 05113665.
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