Disclosure of parental HIV infection to children and psychosocial impact on children in China: a qualitative study

Abstract

This qualitative study aims to investigate parental HIV disclosure and psychological impact from the perspectives of their children. In-depth individual interviews with 47 children who had lost one or both parents to AIDS were conducted in China. All transcripts were coded using the software ATLAS.ti 5. Results showed that few of children knew of parental HIV status before the death of their parents. The main disclosers were the children’s current caregivers. Some children knew about their parent’s HIV infection based on their own observations or through overheard conversation, or their interactions with villagers. Both positive and negative psychological outcomes related to parental HIV disclosure were reported. Psychological counseling is needed for both parents and children to dealing with the parental HIV infection.

Introduction

Parents living with HIV experience the dilemma of whether or not to disclose their serostatus to children, and the appropriate time and setting for such disclosure (Corona et al., 2006; Kennedy et al., 2010; Nöstlinger, Bartoli, Gordillo, Roberfroid, & Colebunders, 2006). Disclosure of parental HIV status has both potential risks and benefits (D. Murphy, 2008). Based on the consideration of benefits of parental HIV disclosure for both parents and children, clinicians often encourage HIV-positive parents to disclose their status to their children (Armistead & Forehand, 1995; Corona et al., 2006). However, research indicates that the rate of parental HIV disclosure to children is relatively low (Armistead, Tannenbaum, Forehand, Morse, & Morse, 2001; D. A. Murphy, Steers, & Dello Stritto, 2001; Nöstlinger et al., 2006). Previous studies in the United States report that the average rate of 59% for parental HIV disclosure (D. Murphy, 2008). Results of a European multi-center study indicate that only 21% of children knew about their parent’s HIV status (Nöstlinger et al., 2006).

Parents are reluctant to disclose their HIV status out of concern about their children being stigmatized (Lee & Rotheram-Borus, 2002; Nöstlinger et al., 2006; Vallerand, Hough, Pittiglio, & Marvicsin, 2005), out of concern about their children from increased psychological burdens (Corona et al., 2006; Schrimshaw & Siegel, 2002; Vallerand et al., 2005; Wiener, Battles, & Heilman, 1998), and/or out of concern about their child’s level of maturity (Vallerand et al., 2005). However, nondisclosure may not always have positive outcomes for children (D. Murphy, 2008). Previous research indicates that nondisclosure can result in anxiety (Forsyth, Damour, Nagler, & Adnopoz, 1996) and depression among children (D. A. Murphy et al., 2001).

Mixed outcomes have been reported in terms of the consequences of disclosure on children (Kennedy et al., 2010). Studies have found that disclosure can have positive outcomes, such as familial closeness (Kennedy et al., 2010; Schrimshaw & Siegel, 2002). Alternatively, other studies have reported that parental HIV disclosure was associated with children’s increased problem behaviors (Armistead & Forehand, 1995; Lee & Rotheram-Borus, 2002; Rotheram-Borus, Draimin, Reid, & Murphy, 1997), and lowered self-esteem (Nöstlinger et al., 2006). One study found that disclosure of parental HIV status was associated with depression among older children (Armistead, Klein, Forehand, & Wierson, 1997).

To date, a majority of the studies regarding parental HIV disclosure have been conducted in the United States and Europe (Kennedy et al., 2010; Nöstlinger et al., 2006; Schrimshaw & Siegel, 2002). Data are very limited for China and other Asian countries. Among the few studies related to HIV disclosure in China, the majority focused on the impact of disclosure on HIV-positive adults and family functioning, but did not focus on the impact on children (L. Li et al., 2009; Li et al., 2007). One survey conducted in Yunnan Province demonstrated that the awareness of parent’s HIV status was one factor which reduced children’s health related quality of life (Xu, Wu, Rou, Duan, & Wang, 2010).

Socio-cultural factors play an important role in HIV disclosure in China. In China, disclosure is not considered an individual matter but a family matter (Li et al., 2007). Family is viewed as the basic unit because of belief in family value in Chinese collectivistic culture (Schweder & Bourne, 1984). Under this cultural belief, usually health professionals inform patients’ HIV status to their family member first (Li et al., 2007).

China has experienced a rapid progression of the AIDS epidemic in the last two decades. Hundreds of thousands of farmers in rural central China were infected with HIV through unhygienic blood collection procedures during the late 1980s and the early 1990s. Stigmatization against people living with HIV and their family members including uninfected children was prevalent (Lin et al., 2010). However, little is known about parental disclosure practices in these areas and the impact of parental HIV disclosure or nondisclosure on children among these families. In this paper, we will present qualitative data on the children’s reports about knowledge of their parents’ HIV status and their perspectives on how disclosure or non-disclosure affected their own well-being both before and after their parent’s death.

Methods

The current data analysis is embedded within a larger qualitative and quantitative study on psychological needs of children affected by AIDS in central China (X. Li et al., 2009). The study protocol and consenting procedures were approved by the Institutional Review Boards of Wayne State University in the United States and the Beijing Normal University in China. In this paper, we will focus on the qualitative data from in-depth individual interviews with 47 children who have lost one or both parents to AIDS. Appropriate consent/assent was obtained for each child.

The research methods have been described in detail elsewhere (Zhao et al., 2009). Briefly, in-depth individual interviews were conducted using semi-structured interview guides. All children were asked whether they knew the reasons for the death of their parents, how they acquired the information, and what were their feelings associated with this knowledge. All individual interviews were digitally recorded and transcribed verbatim and translated into English over the course of data collection. All transcripts of in-depth individual interviews were coded using the qualitative data analysis software ATLASti 5.0 (Muhr, 2004). For the purpose of data analysis in this study, codes relevant to disclosure such as “type of parent’s disease”, “reasons of parental death”, “seeing doctors”, “treatment”, “hospital”, “stigmatization”, “HIV knowledge”, “feelings of parental disease” and “feelings of parental death” were sought. Data were analyzed for patterns of disclosure experiences in terms of who disclosed when they did so, and the context of the disclosure. Data were also analyzed to assess the children perceptions and feelings in cases of nondisclosure.

Results

The mean age of participants was 12.9 years (ranged from 8 to 17). Among the 47 participants, 34 (72.3%) were double orphans (children who lost their parents to AIDS). Twenty seven (57.4%) participants were male. The mean age of the children at the time of their mother’s and/or father’s death was 7 and 8 years respectively. The majority of children knew their parent’s HIV status after the death of their parent(s). Disclosers included surviving parent, other caregivers, e.g., grandparents, doctors, and local village residents. In addition, children became aware of their parents’ HIV status through their own observations and experiences.

Parental disclosure

The time of HIV testing for all former plasma donors in Henan was implemented from October 2004 to June 2005 (Wu, Sun, Sullivan, & Detels, 2006). For many of those infected by HIV through unsafe blood selling, knowledge of their own status did not occur until after symptoms appeared and/or an illness episode. Children were therefore aware of their parents’ condition though not necessarily aware of the cause. In the case of one 11-year old girl, her surviving mother disclosed her own serostatus and the child’s father’s cause of death:

“He [her father] went to [the city] to work. One day he phoned my mom and he was in bed given an IV…Finally, he came back, and he was thin and yellow…Several months after my dad died. My grandma let me ask my mom to have a medical examination [HIV test]. Mum couldn’t get up after the examination. She told me about it. She asked me not to tell my brother and sister. She told me what disease she had. She said: ‘You must take good care of your brother and sister if I died one day.’ She lay in bed, asked me to come beside the bed and said to me…She said sorry to me…She was very sad since she came back because she knew she had got AIDS…She asked me to study hard and to took good care of my brother and sister.” [Double orphan living in orphanage, girl, 11 years]

One girl lost both her mother and father to AIDS within a few months. After her mother’s death, her father revealed to her that her mother and he had HIV/AIDS. Her father tried to give her more love and encouraged her to live well. The girl told the interviewer that:

“When my mother was ill, my father didn’t tell me yet, because I was so little. They didn’t let me know the truth. But, after my mother went to the heaven, my father hugged me sitting in the yard in evening and told me what disease it was. He persuaded me not to be afraid of it (AIDS) and he would take care of me. And my father said we would still lead a happy life without my mother. My mother would be happy when she saw that in the heaven. Several months later, my father’s situation got worse and worse.”[Double orphan living in orphanage, girl, 12 years]

In both of these responses, the children revealed the surviving parents’ attempts to project a positive future despite the situation of loss.

A girl who was living with her mother after her father’s death told the interviewer that her father did not want to disclose his disease, but her mother made the decision to disclose:

“Oh, my father was ill…His disease was AIDS. He didn’t let others tell us the news. My mother told us…and I was young at that time. My father was afraid that my mother told us (about that). It was my father who didn’t want to tell me. My mother told me.” [Single orphan living at home, girl, 12 years]

Disclosure by relatives and caregivers

After many of the children lost their parents to AIDS in rural China, grandparents and other relatives became the primary caregivers of the orphaned children. During our interviews, the children revealed that few of them knew their parent’s HIV status because of the child’s young age at the time of their parents’ death. In some instances current caregivers provided full or partial disclosure to the child. This disclosure was both caregiver and child initiated.

One boy who lived with his grandparents before moving to an AIDS orphanage stated, “They [his grandparents] have told me that my father and mother died from AIDS.” [Double orphan living in orphanage, boy, 12 years]

In other instances, caregivers did not disclose parental HIV status until a child asked questions. A 14-year-old girl lost her father at 6 years and lost her mother at 7 years. She lived with her uncle after her parents died. After her parents died, she questioned her uncle about the cause of her parents’ death: “So I wondered…Finally I went to ask my uncle if it was AIDS. My uncle said yes.” [Double orphan living in orphanage, girl, 14 years]

Other children revealed ‘partial’ or ‘incomplete’ disclosure by a caregiver or relative about their parents’ illness and cause of death. A 16-year-old boy’s father died of AIDS when he was 2 years old and his mother remarried. He lived with his grandmother.

“My grandmother told me that she did not know what disease my dad had. She thought it might be AIDS. My grandma seldom talks to me about this. Sometimes, she tells me little.” [Single orphan lived at home, boy, 16 years]

Disclosure through healthcare providers

Children learned about their parents HIV status both directly and indirectly through their contact with healthcare providers. One girl recalled that she suspected her father’s illness from the symptoms, but she did not know her father’s HIV status until a doctor told her his disease could not be cured.

“My father…I don’t know if it [her father’s death] was because of (AIDS). He was too tired. He…got sick every day…extremely hot…He went to see the doctor to get an IV [Intravenous therapy]. When I was seeing the doctor out, she told me that it [the disease] couldn’t be cured, etc., so I knew it [her father had AIDS].” [Double orphan living in orphanage, girl, 14 years]

One boy shared his experience of overhearing a conversation between the doctor and his father: “My mother stayed in the hospital in 1998. Nobody told me (about her HIV status). I heard what the doctor said to my father.” [Double orphan living in orphanage, boy, 13 years]

One boy was 12 years old when both of his parents died of AIDS after which he lived with his grandparents. He recalled that his family did not know his mother’s illness until his mother was tested in the hospital.

“When she [his mother] came back from work [in the city as a migrant worker], she was not feeling well. The expense for seeing doctor is high (in the city). So we wanted her to come back. After the test (in the hospital), we knew she had this disease [AIDS].” [Double orphan living at home, boy, 15 years]

When one family member was diagnosed with HIV, other family members were often required by the local CDC to have HIV-testing. Some children reported that they were required to have HIV test after their parents were diagnosed. In some cases when the children were tested, they guessed that their parent’s illness was AIDS. A 12-year-old girl was required to have HIV test. Her mother was relieved when the girl’s test result was negative. The girl told the interviewer:

“I had been given several tests [HIV test]. The doctor said that I did not have HIV. Then my mother felt relieved.” [Single orphan, girl, 12 year]

Another 12-year-old girl told the interviewer:

“They [villagers] all knew we had examined [HIV test] several times, tested our blood sampling. I remembered clearly that doctors did twice at my home, after I came here [orphanage], twice, in school once, altogether up to five or six times, we [children] were all not infected.” [Double orphan living in orphanage, girl, 12 years]

Disclosure through observation and being stigmatized in the community

Children were exposed to community discussions and local perceptions regarding HIV/AIDS. In the study area, many farmers sold blood for money to support their families. As more people became sick, were diagnosed with AIDS, and died, community perceptions related selling blood to increased likelihood of contracting the “special disease” was evident in the villages.

One girl suspected her mother’s condition after she learned information about AIDS in the school. She stated that:

“I didn’t know (my mother had gotten AIDS). She didn’t let me sleep with her. Our school gave us that kind of (information) to prevent AIDS and about keeping it from spreading from the blood, etc. From all of this, I thought [that was why] my mother didn’t let me sleep with her and didn’t even let me touch her. So I wondered.” [Double orphan living in orphanage, girl, 14 years]

Some children knew their parents had sold blood in the past. As the results, they knew their parent’s serostatus by their parent’s past experience of selling blood and their own experiences of being stigmatized by the villagers. One girl recalled that her parents’ attempt to keep “secret” of their participation in blood selling. Finally she was told by neighbors that her parents sold blood. She stated that:

“I was so sad when I found that [they sold blood]. I didn’t know why they sold blood secretly. I came back from school and found no body at home, so I asked the neighbors where my parents were. They didn’t tell me, I asked them again and again and crying. They told me that they went to sell blood…After that they stopped selling blood but got infected. They didn’t know they would be infected the disease by selling blood and let me lose them in my childhood. They didn’t know this.” [Double orphan living in orphanage, girl, 12 years]

For some children, they learned about their parents’ status through overhearing local villagers’ discussions. A girl said that: “A few children said together: ‘Her dad and mom died of AIDS.’” [Double orphan living in orphanage, girl, 11 years]

In other instances, the stigma the children experienced and avoidance behaviors exhibited by villagers and relatives suggested that their parents might have died from HIV/AIDS. A 15-year-old boy’ mother died when he was 6 years and his father died when he was 9 years. After his parents died he lived with his grandparents for 2 years and with his uncle for one year, and subsequently moved to an orphanage. He believed that his father had stomach disease not AIDS. He told the interviewer about the reaction of his villagers:

“They fear it (AIDS). They dare not to keep in touch with us. My father died of a stomach illness, but they say that he died from AIDS. They are afraid of being infected with AIDS, so they don’t let their sons play with me. They don’t let me visit their homes and they don’t come to my home. It seems that they disconnected with me.” [Double orphan living in orphanage, boy 15 years]

Consequences of disclosure

The interview data indicate both positive and negative effects of parent’s disclosure on children. Positive outcomes include children’s opportunity to support their parents during illness and strengthening their relationships. Negative outcomes included fear and anger.

One 14-year-old girl knew her parent’s HIV status from her uncle and observations. She described the time she spent with her parents during their illnesses.

“When he [her father] had the IV [treatment for HIV infection], I told him so many things (to make him to be happy)…he stayed with me and watched me do my homework and paid more attention to me. When I did my homework he sat beside me and never watched TV or went out…My mother would always be my mother. I just stayed with her every day and told her about my life in school. I didn’t tell her that my classmates kept distance from me. I just said that I was very good at school…studying…the teachers were all kind to me and my classmates all had a good relationship with me, etc.” [Double orphan living in orphanage, girl, 14 years]

One of the positive outcomes of disclosure was that children gave more emotional support to the surviving parents. One girl recalled her communication with her HIV-positive mother:

“She [her mother] lay in bed, asked me to come beside the bed and said to me…She said sorry to me. She was very sad since she came back because she knew she had got AIDS…She asked me to study hard and to take good care of my brother and sister…I made up my mind that I will help my mom to reach her dream. I will take good care of my brother and sister.”[Double orphan, girl, 11 years]

Negative outcomes of disclosure included fear of loss of parent(s) and subsequent consequences for the family. One girl stated that:

“[When she knew her father got the disease] I was afraid. I was afraid of the economic situation of my family, if my father died.” [Single orphan, girl, 16 years]

At the time of these children becoming aware of their parents’ illnesses or cause of the deaths, there was feeling of anger associated health care providers or their parents. Some children perceived that their parents did not get the appropriate treatment because they were unable to pay enough money. During the interview, one boy still had some hard feeling with his father’s doctor:

“The doctor didn’t want to treat my dad. He said it was too late to treat my dad. I was very angry. Why didn’t the doctor help his patient? Was it because of having no money? I didn’t think the doctor would be like that…I didn’t think they would (want) to see the patients die without doing anything.”[Double orphan living in orphanage, boy, 15 years]

Another boy expressed his feelings about his mother selling blood. He stated: “She (mother) went to sell blood. I hate that she went to sell blood then. Because when I was very young, when I began to remember things, she still sold blood.”[Double orphan living in orphanage, boy, 15 years]

Consequences of partial disclosure and nondisclosure

Nondisclosure or partial disclosure may cause children to experience psychosocial problems such as fear and anxiety, regret, and anger. Nondisclosure also can leave children with misconceptions about HIV/AIDS.

Some children reported their feelings when they observed the severity of their parents’ illness. One young boy described his feeling when he saw his father’s dying:

“At that time we came to see him. My father’s eyes were very big. I didn’t know why, he couldn’t say a word. At that time I was so scared and lost my soul.” [Double orphan living in orphanage, boy, 8 years]

Another girl expressed her feelings for her parents’ disease:

“I felt that my dad was healthier than my mom. I don’t know why he passed away earlier than my mom. My mom was very thin since she got the disease. She was also very sad. She had a fever every day.” [Double orphan living at home, girl, 15 years]

Some children expressed their feelings of regret after their parents’ death. These children felt that if they had been told the truth, they would have acted differently with their parents. A girl stated, “I thought that I wouldn’t have annoyed my father if I had known the truth [HIV infection] at that time.” [Single orphan living at home, girl, 12 years] Another girl told the interviewer about her feelings of regret. “I feel regret that I had no word with mom when she left, and lost mother’s affection when I was not aware of it.” [Double orphan living in orphanage, girl, 12 years]

Nondisclosure may also cause feelings of anger. One girl had lost both her parents by the time she was 7 years old. She told the interviewer:

“They [villagers] said my father had AIDS. I was very angry, because I didn’t know it all the time. There were just some pimples (in my father’s body), how can they say that was AIDS? I didn’t know father had AIDS and I didn’t know how harmful the AIDS was. I asked grandmother, she didn’t tell me at first. After a long time, I told grandmother that many people said father had AIDS. I again asked grandmother, she told me that was true and she cried.” [Double orphan living in orphanage, girl, 13 years]

Children had some misconception about the transmission routes of HIV due to a lack of appropriate disclosure. One boy lost his father when he was 2 years old. He was too young to remember his father’s illness. Even though his village had a high prevalence of HIV/AIDS, he believed that there were no persons with HIV/AIDS in the village. He stated that:

“People in our village have no AIDS [HIV infection]. People in our village are not allowed to go to that village with many AIDS patients. People think it is ok if they don’t go to visit that village and don’t keep in touch with them.” (Double orphan living at home, boy, 16 years)

One girl thought that her parents contacted HIV through eating with and playing cards with persons with HIV/AIDS.

“Every time I went to see my relatives, I never had a meal there, but my father had meals there [that was why he infected HIV]…(If you) use the same umbrella…and share the same tool with others (you can be infected with HIV)…This was what I thought after my father died…My mother liked to play cards with the other women in our village…I believed that they used the same cards when they played…They [her relatives] talked about it after my father died…You can’t use others’ things. If you do so you will catch the disease…Can’t use the same dining utensils of others.”(Double orphan living in orphanage, girl, 11 years)

Discussion

Results of this study showed that parental HIV status was generally not disclosed to children prior to parent’s death and when disclosure did occur, it was often fragmented or a result of children’s observations and interactions with relatives and villagers. Children received information about their parent’s illness and/or death from a variety of sources including caregivers and other relatives, healthcare providers, and community residents. In a few instances, parents revealed their spouses’ and their own serostatus to a child, but only after death of the spouse.

Parents balanced the need to tell their children about the illness with issues of child’s maturity and age, their own experiences of stigma, dealing with their own and their spouses’ illness/death, and wanting to provide the child with future direction and hope. Parents experienced stigma related to the transmission of the disease through blood selling.

Parents living with HIV may not be able to tell their children as they themselves have incomplete knowledge about HIV and their serostatus. Clearly issues of health provider disclosure of information, patient’s rights and issues of confidentiality need to be addressed as a part of programs to help parents disclose their serostatus to children. Moreover, parents or caregivers are often uncertain how to counsel about disclosure, therefore, adults family members need to be educated on whether, how, when to disclose parental HIV to children.

While disclosure to children resulted in some positive outcomes in terms of strengthening family relationships, there were negative impacts related to both disclosure and nondisclosure. For all of the children, there were experiences of anger and fear associated with their parents’ illness and death. However, these feelings were compounded in situations of nondisclosure resulting in children’s feelings of regret for not having open communication with their parents or lack of opportunity to provide care and support for their parent(s). Nondisclosure also prevents the opportunity for children to prepare themselves for bereavement after the death of a parent.

Children may seek information about their parent’s illness and/or death from other sources. Children experience misconceptions about HIV transmission and treatment options resulting in increased anxiety and feelings of anger toward health care providers. Such perceptions can potentially cause more psychosocial distress than those which result from planned disclosure. Psychological counseling and social support are needed to the families with parental HIV to both parents and their children regardless in the cases of disclosure and nondisclosure.

There are some limitations to this study. First, we did not have data in this study on parents’ or caregivers’ perceptions and experiences regarding parental HIV disclosure. We were not able to assess the reasons of disclosure or nondisclosure from the perspective of parents or caregivers. Second, participants in this study were orphans who were quite young when their parents died. The findings may not be generalised to other children who live with HIV-positive parents (e.g., vulnerable children). Third, the sample of this study only included rural children with parents affected by blood born HIV infection. Their experiences may be different from children in urban areas and/or with parents infected through other modes of transmission (e.g., sex or drug use). Fourth, this is a qualitative exploratory study. The potential causal impact of disclosure and nondisclosure on children’s psychosocial well-being may not have been appropriately assessed.

HIV treatment is becoming increasingly available in China, including free treatment for residents in rural areas with high levels of HIV prevalence (Zhang et al., 2009), HIV disclosure dilemma challenges parents, caregivers and other relatives, medical providers and the broader society. Disclosure to children provides both parents and children with opportunity to share their experiences, strengthen family support, and potentially increase access and adherence to current medical treatments (Ding, Li, & Ji, 2011). In rural areas of China, uninfected children played an important role in care of parents living with HIV (Zhang et al., 2009). If children are aware of their parent’s serostatus, they can provide more support for the family and they may have more opportunity to learn accurate information about HIV/AIDS transmission and treatment. Moreover, disclosure to children may reduce a variety of emotional problems resulting from insufficient information about a parent’s illness and prognosis. Although children may experience stigma with and without disclosure, appropriate disclosure may provide children with opportunity to more readily cope with stigmatization. Future studies are needed in China regarding disclosure, the roles of parents, other family members, and healthcare providers in the process of disclosure, and the psychological, physical and social outcomes for children, parents, and family in cases of disclosure and nondisclosure.

China is a society where the cultural norm discourages the disclosure of distressful events in general and the disclosure of HIV serostatus in particular (Tse, Chong, & Fok, 2003; Yoshioka & Schustack, 2001). Disclosure of parental HIV serostatus to children must be understood in socio-cultural contexts, and must be addressed in terms of specific cultural barriers. Likewise, interventions designed to facilitate disclosure must be implemented at multiple levels including community, healthcare and educational infrastructure, the extended family, and parents and their children.

Table 1.

Gender and age of 47 children interviewed

Gender	Age	Age when father died	Age when mother died
Boy	15	11	7
Boy	15	13	13
Boy	15	11	No answer
Girl	12	9	9
Girl	10	7	6
Girl	11	Did not remember	Did not remember
Boy	15	9	6
Boy	8	2	3
Boy	12	9	8
Boy	13	8	5
Girl	14	6	7
Boy	11	8	7
Boy	12	2	5
Girl	13	7	6
Girl	13	7	7
Girl	11	7	9
Boy	15	11	10
Boy	12	8	6
Girl	17	11	15
Girl	8	5	5
Girl	11	8	6
Girl	14	12	10
Boy	15	8	13
Boy	16	2	Was alive
Boy	9	Died before the child was born	5 months
Girl	14	9	1
Boy	16	3	1
Girl	15	12	12
Boy	10	9	9
Boy	16	5	7
Boy	12	8	7
Boy	15	12	12
Boy	14	7	5
Boy	14	Did not remember	Did not remember
Boy	11	Was alive	9
Girl	15	Did not remember	Was alive
Boy	11	6	Was alive
Boy	14	9	1
Boy	10	2	Was alive
Girl	15	14	Was alive
Boy	10	9	10
Girl	11	Was alive	7
Girl	12	8	Was alive
Girl	13	6	Was alive
Boy	12	Was alive	2
Girl	13	11	Was alive
Girl	16	12	Was alive