J Child Fam Stud (2009) 18:21–30
DOI 10.1007/s10826-008-9202-5
ORIGINAL PAPER
Psychosocial Well-being of Children in HIV/AIDS-Affected
Families in Southwest China: A Qualitative Study
Tao Xu Æ Zhihua Yan Æ Song Duan Æ Changhe Wang Æ
Keming Rou Æ Zunyou Wu
Published online: 28 March 2008
Ó Springer Science+Business Media, LLC 2008
Abstract We investigated the psychosocial well-being of
children in HIV/AIDS-affected families in rural China
from the child’s and caregiver’s perspectives. Semi-
structured interviews were conducted among children
living in HIV/AIDS-affected families (n = 16), their
caregivers (n = 16) and key community informants
(n = 5). Our findings showed that all of the children relied
heavily on caregivers and peers to gain psychological
support. Children’s psychosocial problems included fear,
anxiety, grief, and loss of self-esteem and confidence.
Stigma towards children existed, including isolation,
ignorance and rejection. Our study illustrates that HIV/
AIDS has impacted negatively on the psychosocial well-
being of children. These findings can be used as pre-
liminary data supporting more researches to profoundly
explore the psychosocial impact of HIV/AIDS on children
and appropriately indicate the need for interventions.
Keywords HIV/AIDS
Parent
Children

Psychosocial influence
Qualitative research
T. Xu (&)
National Centre for Women and Children’s Health, Chinese
Centre for Disease Control and Prevention,
Building A No. 13 Dongtucheng Rd., Chaoyang District,
Beijing 100013, China
e-mail: xutao6622@yahoo.com.cn
Z. Yan
C. Wang
K. Rou
Z. Wu
National Centre for AIDS/STD Control and Prevention, Chinese
Centre for Disease Control and Prevention, Beijing, China
S. Duan
Division of AIDS/STD Control and Prevention, Yunnan
Provincial Centre for Disease Control and Prevention,
Kunming, China
Introduction
Although HIV/AIDS is most prevalent among adults of
reproductive age, the illness has important implications for
younger family members dependent on these adults for
parental support (UNAIDS & UNICEF 2004). In 2005,
more than 15 million children under the age of 18 had lost
one or both parents to AIDS worldwide (UNICEF 2007).
The health status of HIV/AIDS-affected children, espe-
cially the psychosocial problems they encounter, need to be
identified (Foster 2002). China is a strongly family-orien-
tated society. Children are dependent upon their elders and
parents (Lee et al. 2005). Children’s relationship with
parents is one of the most important variables contributing
to the occurrence of behaviour problems both in preschool
children and children aged 6–15 (Children’s Behaviour
Problems Research Group 1993). Because of these cultural
characteristics, the impact of HIV/AIDS on children in
China may be different from that of other cultures. A good
understanding of the psychosocial impact HIV/AIDS has
on children can better inform the design of intervention
programs.
Children in HIV/AIDS affected families may face
additional life burdens, with one study indicating that this
may impair their confidence as well as self-esteem (Siegel
and Gorey 1994). Reductions in self-esteem have been
consistently shown to be associated with increased psy-
chological problems (Raveis et al. 1999; Sandler et al.
2003; Worden 1996). Children affected by HIV/AIDS may
feel that adults are not aware of their needs (Atwine et al.
2005). They may not be confident as to whether they are
accepted, which may impair their self-confidence (Seng-
endo and Nambi 1997). According to motivational
theoretical models of children’s adaptation to adversity,
stressors following parental death (e.g., move to a new
123
22
house, dropping out of school) may eliminate contact with
esteem-supporting caregivers and peers and reduce
opportunities for esteem-enhancing activities (e.g., sports,
social activities) (Wolchik et al. 2006).
Since HIV/AIDS is a stigmatizing disorder, children
from HIV/AIDS affected families become victims of social
stigmatization and ostracism. While many studies have
addressed the stigma and discrimination issues towards
adults living with HIV/AIDS, limited data in this regard is
available on children. In the Nigerian culture, when one
member of the family becomes HIV positive, the whole
family will be called an ‘‘AIDS family’’ by other villagers
(Alubo et al. 2002). Similarly, the inappropriate categori-
zation of children who lose one or both parent as ‘‘AIDS
orphan’’ in some programs may bring negative instead of
positive influences to children (UNAIDS & UNICEF
2004). Researches conducted in other African countries
have found that HIV/AIDS affected children suffer from
stigma and discrimination at home, school and in their
leisure environments (Foster et al. 1997; International
HIV/AIDS Alliance 2003; Ostrom et al. 2006). Parents are
concerned that if they tell their children the truth, the
children might be unable to keep the diagnosis a secret and
tell other people, which will result in stigmatization, iso-
lation (Moneyham et al. 1996; Murphy et al. 2002; Ostrom
et al. 2006) and, consequently, result in the psychological
problems mentioned above.
In addition to stigma and discrimination, children
affected by HIV/AIDS may suffer from anxiety and fear
during the years of parental illness, then grief and trauma
following the death of a parent (Foster et al. 1997; Foster
2002; Makame et al. 2002). Children whose parents died of
AIDS are more likely to be shielded from parental death
(International HIV/AIDS Alliance 2003). When they real-
ize their parent is gone forever, they may sink into
depression (Foster 2002). In other cases, children may rely
on defence mechanisms (i.e. denial, inhibition and isola-
tion) which may impair or distort the grief process (Harris
1991). Under some circumstances, children may not
understand the situation and therefore might not express
their grief effectively (International HIV/AIDS Alliance
2003).
Studies of the impact of HIV/AIDS on children have
largely been conducted in African countries. Limited
information is available in China. In a cross-sectional
household survey of 213 children living in HIV/AIDS-
affected families in rural China, 40.0% of the children had
lost at least one parent. Most of the children resided in a
household with low economic status and high dependency
ratio. One-half of the children experienced discordant
family relations, family anxiety, and shame, suggesting that
they were living in stressful environments. Orphans and
older children were less likely to attend school and more
123
J Child Fam Stud (2009) 18:21–30
likely to be truant if enrolled in school (Yang et al. 2006).
Another study conducted in five counties identified 251
children orphaned by HIV/AIDS among which 15.5% had
lost both parents. Three-fourths of the children perceived
their living situation negatively as a result of parental
sickness, parental loss, and stigma and discrimination.
Over 60% (63.4%) of the children reported their great
mental shock and grief after their parents passed away.
One-third (32.3%) of the children reported their decreasing
social contacts after parents’ deaths (Xu et al. 2004).
More research is needed to profoundly understand the
psychosocial impact of HIV/AIDS on children and appro-
priately indicate the need for interventions. Our study takes
the first step toward understanding the psychosocial well-
being of children in HIV/AIDS-affected families in rural
China. We explore the psychosocial problems experienced
by these children including emotional problems, interper-
sonal relationships, and stigma and discrimination.
Methods
Study Setting
The study was conducted in Longchuan County Yunnan
Province, China, which has a long and intense exposure to
drug use, resulting in a high prevalence of HIV/AIDS
among drug users (Wu et al. 1997). Four townships were
selected to participate in the study, where most (70%) of
the registered HIV infected cases in Longchuan County
resided, accommodating around 80 % of children orphaned
by HIV/AIDS in the County (Yunnan Centre for Disease
Control and Prevention 2004).
Study Participants
HIV/AIDS affected families were approached to partici-
pate in the study. Families were eligible if they (1) had at
least one child aged between 8 and 17 years old, (2) the
child was HIV-negative, (3) the child had at least one HIV-
positive parent or had lost one or both parents to AIDS.
Within each household, one child aged 8–17 and one
caregiver (identified as one who is actively involved in day
to day care of the child) were interviewed.
Community key informants were also recruited to par-
ticipate in the study. Community informants should be able
to provide information on (1) the HIV/AIDS epidemic
situation in the community, (2) living situation and well-
being of children affected by HIV/AIDS in the community,
and (3) perceptions on the psychosocial needs of children
affected by HIV/AIDS in the community.
A combination of convenient and purposeful sampling
strategies was utilized to determine the sample size. The
J Child Fam Stud (2009) 18:21–30
first stage involved the selection of key informants, which
were the most accessible subjects in the community. As the
interviews with key informants were carried out, we gained
general ideas about the living situation of children and their
families. In the second stage, we were able to start with a
purposeful sample framework including variables such as
child’s orphan status, gender, and relationship with care-
givers. As the data was collected and analysed, an
interpretative framework was constructed. The sampling
process stopped when no new themes emerged and an
acceptable interpretative framework was constructed
(Marshall 1996).
From August to September 2005, 16 interviews were
conducted with children aged 8–17, including five paternal
orphans, two maternal orphans, four double orphans, and
five non-orphans. Sixteen interviews were conducted with
caregivers, including seven grandparents, five mothers,
three fathers and one uncle. Five interviews were held with
key community informants, including a village leader
(male, age 35), a local health service provider (female, age
33), the principal of the local middle school (male, age 46),
the director of the local Women’s Federation (female, age
39), a vice-director of the local civil affairs bureau who
were in charge of orphan affairs (male, age 39).
Recruitment Procedures and Data Collection
The study collected qualitative data using semi-structured
interview. Institutional ethics approval to conduct the study
was obtained from the Institutional Review Boards at
National Centre for AIDS/STD Control and Prevention,
Chinese Centre for Disease Control and Prevention.
HIV/AIDS affected families were recruited through the
help of local health service providers who treat HIV-
positive patients in the community. The health service
providers visited eligible families and asked if they would
like to participate in the study. If they agreed, potential
participants met with an interviewer later, either in their
own house or the program office, depending on the par-
ticipant’s request. The interviewer talked to the participant
about the aim of the study and started the informed consent
process. Informed consent was obtained before interview;
directly from caregivers and key community informants.
For children, caregivers provided consent. Informed con-
sent contained information about the purpose of the study,
voluntary participation, potential risks and benefits of
participation, confidentiality, and the contact information
for the Principle Investigators.
Each interview was conducted in a private room on a
one-to-one basis in the health service provider’s office or
the participant’s own house, according to the participant’s
request. Caregivers were interviewed first, after which they
were asked whether they would agree to their children
23
participating in the study. 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.
Since not all children were aware of their parents’ HIV
status, specific questions about HIV/AIDS were not asked
unless the children mentioned the topic themselves. To
increase comfort and reduce anxiety, interviewers played
with the children before interviews to establish rapport.
Younger children were asked if they would like to draw
their feelings while they were being interviewed (Molzahn
and Kikuchi 1998). However, these drawings were not
analysed. Counselling was provided immediately for chil-
dren who became upset during the interview by a volunteer
from the local Women’s Federation who had experience
working with HIV affected families. Participants were not
given any form of payment for interviews. The duration of
each interview ranged from 30 min with the younger
children to 1.5 h with the older children and the caregivers.
All interviews were recorded.
The community key informants were recruited through
the help of village heads, who approached eligible subjects
and talked to them about the study. If village heads were
eligible, they were approached directly by one interviewer
and recruited in the study. The procedures of the interviews
were the same with those for the caregivers.
Data Processing and Analysis
ATLAS.ti (version 5.0) was used to facilitate the data
analysis. All interviews were transcribed by one research
staff member and the quality of the transcription was
double-checked by another staff member. A local research
staff member, fluent in the local dialect, transcribed the
interview when a local dialect was used. The transcripts
were coded and analysed by the first author. After careful
and repeated examination of the transcripts, categories and
subcategories of analysis were developed and defined. A
total of 54 codes and 11 code families (a group of codes
with the same theme) were created based on the categories
and subcategories developed. This made it easier to analyse
by individual family code as well as visualize the relations
among codes in a network (Li et al. 2007). For example,
‘‘children’s emotional health’’ is a family code, under
which there are ‘‘emotional problems in daily life’’,
‘‘change of temper and character’’, ‘‘interpersonal rela-
tionships’’ and ‘‘children’s perception of future life’’.
Constant comparative method was employed to facili-
tate theme development, following the steps recommended
by Dye et al. (2000). In the categorizing data step, groups
were created for children and their caregivers according to
children’s orphan status (non-orphan, paternal orphan,
123
24 J Child Fam Stud (2009) 18:21–30

maternal orphan and double orphan) and caregivers’ rela- Table 1 Demographic characteristics of children and caregivers
tion with children (mother, father, grandparent, and other). Male Female Total %
In the comparing data step, similarities and differences
within and between groups were compared to detect pat- Children (n = 6) (n = 10) (n = 16)
terns, variations, or concepts. The categories of themes Age
evolved during the analysis, as more patterns, variations 8–12 years 3 3 6 37.5
and concepts were identified. Analysis was further 13–17 years 3 7 10 63.5
accomplished by identifying the themes that emerge most Orphan status
frequently across the transcripts. All codes relevant to Paternal orphan 3 2 5 31.2
children’s psychological health were searched and results Maternal orphan 1 1 2 12.5
categories were determined based on common themes Double orphan 1 3 4 25.0
across children’s psychological health related codes (Li Non-orphan 1 4 5 31.2
et al. 2007). Whether in school
Yes 4 9 13 81.2
No 2 1 3 18.8
Results Caregivers (n = 8) (n = 8) (n = 16)
Age
Sample Characteristics 30–39 years 2 6 8 50.0
40–49 years 2 1 3 18.8
Table 1 summaries the demographic variables of the 50 and older 3 2 5 31.2
caregivers and children. About two-thirds (62.5%) of Education
children were girls. Most (81.2%) children were currently Never in school 5 3 8 50.0
attending school. The average time of orphans having lost Primary 1 3 4 25.0
their parents was 38 months. Non-orphans’ parents had Junior high school 2 1 3 18.8
been HIV positive for an average of 15 months. Forty-three High school and higher 1 0 1 6.2
percent of children received care from their grandparents. Relationship with child
According to the Yunnan CDC surveillance report (Yunnan
Grandparent 5 2 7 43.8
Centre for Disease Control and Prevention 2004) and
Mother – 5 5 31.2
previous research in the same region (Yang et al. 2006),
Father 3 – 3 18.8
study participants were representative of children and their
Other relative 1 0 1 6.2
families affected by HIV/AIDS in the research area.

Children’s Psychosocial Problems

impression that there had been ‘‘no emotional problems’’.
However, as the interview progressed, it became evident that
Analysis of the interview transcriptions yielded three pri-
some emotional issues had, indeed, existed. We categorized
mary themes relevant to children’s psychosocial problems:
several dimensions of emotional issues: fear and anxiety,
(a) emotional issues; (b) interpersonal relationship; and (c)
sadness and grief, and confidence and self-esteem.
stigma and discrimination. These three primary themes
were divided into sub-themes to elucidate pertinent aspects
Fear and Anxiety
(see Fig. 1). In our sample, all children were suffering from
emotional problems, such as fear, anxiety, and loss of self-
Ten out of 16 children reported fear of not knowing what
esteem and confidence. These emotional issues in turn
was happening concerning their parents’ health. Although
influenced children’s interpersonal relationships, both with
three-fourths (75.0%) of the children were not informed of
their caregivers and peers. In many cases, stigma and dis-
their parents’ HIV/AIDS status, children had their own
crimination was the main cause of children’s emotional
understanding of the situation from their observations.
issues and the changes in their interpersonal relationship.
The proportions of children that reported each type of My dad has been sick for a long time. Last year he
psychosocial problems are listed in Table 2. was able to farm, but this year he can only stay at
home and do some housework. I don’t know what is
Emotional Issues happening to him. Whenever I ask him what’s wrong,
he always says ‘nothing’. I am really scared that some
At the beginning of the interviews, in response to an invi- day he will die. My mom has already gone, what will
tation to talk about their feelings and life, children gave the I do if he dies too? (Maternal orphan, boy, age 13)

123
J Child Fam Stud (2009) 18:21–30 25

Fig. 1 Primary themes with

sub-themes Psychosocial influences

Emotional issues
Interpersonal relationship
. .Fear and anxiety
. Family relationship .Sadness and grief
Peer relationship
.Confidence and Self-esteem

Stigma and discrimination

.Perceived Stigma
.Perceived non-stigma

Table 2 Psychosocial
Primary themes Psychosocial issues (sub-themes) Male Female Total %
problems reported by children
(n = 6) (n = 10) (n = 16)
in HIV/AIDS-affected families
Emotional issues Fear and anxiety 3 7 10 62.5
Sadness and grief 3 4 7 43.8
Loss of confidence and self-esteem 4 6 10 62.5
Interpersonal relationship Perceived good family relationship 6 6 12 75.0
Perceived bad family relationship 3 1 4 25.0
Perceived good peer relationship 4 6 10 62.5
Perceived bad peer relationship 4 2 6 37.5
Stigma and discrimination Perceived stigma 1 3 4 25.0
Perceived non-stigma 5 5 10 62.5

I think there must be something wrong with my dad
because now he has a very bad temper. He often
quarrels with my mom. I was very scared when they
quarrelled. I just hid in my room and cried. (Non-
orphan, girl, age 11)
Younger children may only be scared by the illness and
death of their parents and know nothing about the future
implications. Older children had more to concerns which
resulted in more psychological stress. One boy living with
his grandparents stated (double orphan, age 15), ‘‘I am
really worried about my grandpa...He has been sick in bed
since my dad died.’’ One girl living with her uncle reported
her worries about the enormous amount of housework:
My aunt always makes me do housework, wash
dishes, feed pigs, and weed ... I don’t even have time
to do my homework. If I get up late in the morning
and fail to finish the housework, she will tell me off.
(Double orphan, girl, age 12)
Sadness and Grief
Seven out of 11 orphans reported sadness and tears when
talking about their lost parents. Two orphans did not
mention such feelings because they were very young when
their parents died. Two children were held from knowing
the truth about their parents’ death. For example, one boy
(double orphan, age 10) stated, ‘‘Grandma told me that
mom and dad had left home to work in a faraway place.
I hope they can come home and stay with me this year.’’
I knew when my mom died ... They [the doctors]
called my grandpa and he told me after I came back
from school ... I was so sad that I cried for a whole
day and did not eat anything. (Double orphan, girl,
age14)
The girls were suffering from sorrow when their dad
died. Now years have past and they feel better. But
my little girl still has something hard in her mind. She
always mentions her dad in her compositions.
(Mother, age 38)
Three children mentioned that they were not always
passively suffering from sadness and grief. They were also
able to find ways to express their feelings and make
themselves feel better. The director of Women’s Federation
talked about one double orphan:
One day he came to my house and told me that he
wanted to sing an ‘‘orphans’ song’’ ... So I compiled a
song. [When he learned to sing this song], he said this
song was so sad and he felt like crying when singing

123
26
it. But he still wanted to sing it because he believed it
could make him feel better. (Director of Women’s
Federation, female, age 39)
In some cases, children choose to deny the truth of
parental illness or death, and avoid thinking about anything
unhappy. One girl stated (maternal orphan, age 13), ‘‘I just
do not want to think about it [the death of her mother] ...
I still have my dad and brothers, I just want to live a happy
life.’’
Confidence and Self-Esteem
During the interview, over 60% (10/16) of children talked
very little and seemed to have little confidence in what they
had said and done. In addition, from the perspectives of
caregivers, these children were sensitive to other’s opin-
ions. One grandpa recalled (age 61), ‘‘He became quiet
after his mom died... It is difficult for him to express his
feelings.’’
Twenty-five percent of children felt they grew more
mature from the painful change in family situation. One
boy (paternal orphan, age 16) spoke about his increased
responsibility for his family members, ‘‘[After dad died],
I am the only male in the household ... I think it is my duty
to take care of my sisters and help mom with housework.’’
Interpersonal Relationship
Interpersonal relationship relates to relationship with other
human beings and includes family and fraternal relation-
ships. The former includes association with members of
nuclear and extended families; the latter refers to the
association with friends and other people.
Family Relationship
All of the children reported relationships with members of
their nuclear and extended families. Seventy-five percent of
children believed they were in good relationship with their
caregivers, because they tended to receive more care and
emotional support from their caregivers. Children relied
heavily on their adult caregivers to gain a sense of eco-
nomic, emotional and social security.
We always avoid blaming him even if he does
something wrong. Besides, he also has great respect
for us. He is very self-conscious. Every time he
comes back from school, he does housework con-
sciously. (Grandpa, age 56)
Every time I feel unhappy, I can tell my grandpa and
grandma. They are always there to listen to me.
(Double orphan, boy, age 10)
123
J Child Fam Stud (2009) 18:21–30
However, in some cases, the family relationships were
broken. Thirteen percent of children blamed their parents
for using drugs. One boy (maternal orphan, age 13)
reported he did not get along well with his father, ‘‘I know
he got the disease [AIDS] because he used drugs... I feel
like hating him. He spent all our money. I think it is his
fault!’’ One old caregiver suffered from the death of a
family member, which also affected their relationships with
the children. As one girl stated:
[Since my dad died], my grandma has tried to drink
pesticide [to commit suicide] several times. I am
really worried about her. Last week she drank pesti-
cide again only because I didn’t do something as she
asked! I dare not to make her angry anymore.
(Double orphan, girl, age 14)
Peer Relationship
Our findings showed that the perceptions of peer relation-
ship seemed to be different between children currently
attending school and those who had dropped out of school.
In addition, younger children and older children viewed
peer relationship differently. For younger children, their
lives were centred at home with the adult caregivers rather
than with peers. They tended to be more withdrawn and
isolated and were less involved with peer activities. Older
children, however, tended to spend less time at home and
more with peers, frequently relying on best friends.
Twelve out of 16 children were currently attending
school. Eighty-three percent of them were getting along
well with their peers. In this aspect, girls seemed to do
better than boys.
I have three ‘best friends’. They all know my mom
died. When I miss my mom, I can tell them and they
will try to comfort me. (Maternal orphan, girl, age 13)
She [the child] seems to have many friends. They
often come to my house and watch TV together. She
told me that when she was in a bad mood, her friends
could tell jokes and made her laugh. (Father, age 40)
Two children have difficulty getting along with their
peers in school. Two community key informants were
concerned that due to lack of friendships, these children
might turn to others in the community and get involved in
risk behaviours.
This [their parents died of AIDS] makes them feel guilty
in front of others. Some [children] may become intro-
verted and rarely communicate with others... (Vice-
director of the local civil affairs bureau, male, 39)
Some children got involved with a bad crowd. [They
learnt to] smoke, drink, and even use drugs. It is very
J Child Fam Stud (2009) 18:21–30
dangerous. (Principal of local middle school, male,
age 46)
Three children mentioned the change of peer relation-
ships after they dropped out of school. From their point of
view, dropping out of school damaged their relationships
with former friends and made them feel lonely and
isolated.
I had two best friends when I was in school. But now
we rarely meet ... I think the biggest change is that I
have fewer friends than before. I have to work and
have no time to hang out with them. (Paternal orphan,
boy, age 14)
Stigma and Discrimination
One-eighth of children and their caregivers reported
experiences of stigma and discrimination during the inter-
views. However, only six families had told other people in
the community about their families’ HIV/AIDS status. In
addition, according to the legal guidance, health service
providers have the responsibility to ensure confidentiality
for the HIV/AIDS affected people. Consequently, in most
cases, community members may know that some one in the
family died of a serious disease, but they may not be sure if
it was AIDS.
Perceived Stigma and Discrimination
Four children dropped out of school at the time of inter-
view. All of them mentioned having been stigmatized by
their peers because their parents had HIV/AIDS or died of
AIDS. For these children, the feeling of stigma was often
attributed to ignorance about their claims and strongly
correlated with rejection.
One day when I was on my way home, they [some
children] said to me, ‘‘Your dad has that disease
[AIDS]; you shouldn’t be in the same class with us.
(Double orphan, girl, age 15)
Normally we have two students sitting on one bench.
But nobody wants to share bench with him [one
maternal orphan]. (Principal of local middle school,
male, age 46)
Two children experienced self-stigma, which means
they felt self-hatred, shamed and isolated themselves
from others. One girl (paternal orphan, age 11) talked
about her feelings, ‘‘I do not know how they [the class-
mates] knew that [my dad died of AIDS] ... I am so
embarrassed that sometimes I even do not want to go to
school anymore.’’
27
Perceived Non-Discrimination
Over 60% (10/16) of children and their caregivers reported
non-discrimination in the community. Four out of six
families which had disclosed their HIV/AIDS status men-
tioned no big changes in their relationships with their
neighbours.
Our neighbours know my mom and dad have this
disease, but they are not afraid. Sometimes they will
come to our house and chat with my mom ... Last
week when I had a cold, she [one of the neighbours]
brought some medicine to me. (Non-orphan, girl, age
15)
Some of his friends know his father died of AIDS, but
they keep coming to my house. Sometimes he brings
home so many friends that it is noisy for me [par-
ticipant said with a laugh]. They will play basketball
in my backyard. (Mother, age 35)
The local health service provider who treats HIV posi-
tive patients believed that some characteristics among the
Jingpo minority contributed to the non-discrimination
towards people living with HIV/AIDS in their community:
The Jingpo people are not afraid of it [AIDS]. Maybe
some people will look down on them [people living
with HIV/AIDS] and keep away from them, but most
Jingpo villagers are definitely willing to help them.
(The local health service provider, female, age 33)
The village leader described the change of attitude
toward people living with HIV/AIDS in his community:
We have launched lots of educational campaigns
focusing on the prevention of HIV/AIDS since last
year. Now the attitude towards people living with
HIV/AIDS in our village has changed a lot. Many
villagers spontaneously act out to help those children
with their basic material needs and other things. (The
village leader, male, age 35)
Discussion
Our findings indicated that children living in HIV/AIDS-
affected families were suffering from a number of psy-
chological problems, which is consistent with previous
studies from other countries (Atwine et al. 2005; Makame
et al. 2002; Nyambedha et al. 2003; Sengendo and Nambi
1997). The dimension of psychological problems varies
among children of different orphan status. Non-orphans
suffered more from fear and anxiety because of the bad
health status of their parents. Although most of them were
123
28
not informed of their parents’ HIV status, they could have
their own understanding of the situation. This lack of
communication might cause more stress for children
(International HIV/AIDS Alliance 2003). For those who
had lost one or both parents, sadness and grief were the
most common feelings. Our findings seemed to suggest that
children could clearly remember the scenes when their
parents died years ago. Older children tended to silently
bear the grief of loss and do not tell their caregivers. This is
consistent with findings of another study (Woodring et al.
2005). As a result, adults might ignore the real feelings of
children and fail to provide proper emotional support for
them (Foster 2002). This suggests that it is necessary to
increase caregivers’ capacities to monitor and deal with
children’s psychological problems in intervention
programs.
Our findings showed that at the beginning of the inter-
views, most children did not report they were suffering
from life pressure, stigma and other emotional problems.
As the interviews progressed, especially after the inter-
viewers played with the children and established a
relationship of mutual trust, the children gradually dis-
closed the psychological problems they were exposed to.
One possible explanation is that in China, drug use and
HIV/AIDS are both regarded as moral issues. Children
being under the influence of traditional Chinese education,
they believed it was their responsibility to preserve the
dignity of the family and not to disclose the family’s
negative circumstances to strangers. They were also
unwilling to admit the negative influence resulting from
these circumstances (Zhang 2006). Through the inter-
viewers’ efforts, mutual trust was established. This made
children understand that interviewers were there to help
and dispelled the children’s worries. This suggests that
interventions should carefully consider children’s needs
and strive to obtain their trust and active participation.
When HIV/AIDS begins to affect a household, the
relationship with caregivers provides the most immediate
source of psychological support (UNAIDS & UNICEF
2004). Consisted with the situations of African and other
Asian countries (Ankrah 1993; Forehand et al. 1998; Fos-
ter et al. 1997; Ntozi 1997; Safman 2004), over 60% of
children orphaned by HIV/AIDS in China continue to live
with surviving parents or their extended family (Yang et al.
2006). What might be different from other cultures is that
in China, parents’ disadvantage factors (e.g. illness) may to
a great extent impair the child–parent relationship, with
one study finding that mother’s illness was one of the risk
factors related to children’s behaviour problems (Zhang
et al. 2002). In our sample, 75% of children had a good
relationship with their caregivers. They relied heavily on
adults for a sense of security. However, in some cases,
these relationships were broken. Thirteen percent of
123
J Child Fam Stud (2009) 18:21–30
children reported bad relationships with their caregivers.
These children tended to report more emotional burdens
than others. Therefore, it will be necessary to have care-
givers involved in intervention programs and help to
improve their skills to provide psychological support for
their children.
Our findings revealed that children seemed to be con-
cerned about their relationships with their peers, frequently
relying on their ‘‘best friends’’. Such a close relationship
offered emotional protection and support, but left children
psychologically vulnerable in the event of the relationship
being disrupted (Harris 1991). In our study, if children
dropped out of school, they were more likely to feel lonely
and isolated because the number of friends and the fre-
quency of peer contact decreased. According to the
transactional theories of child development, peers play an
important role in influencing children’s cognitions,
behaviour, and overall personality characteristics (Samer-
off and MacKenzie 2003; Sroufe and Rutter 1984). This
suggests that peer support should be an essential compo-
nent in intervention programs.
The participants of our study did not report serious
stigma and discrimination. This was beyond our expecta-
tion and inconsistent with previous studies conducted in
other countries (Alubo et al. 2002; Foster et al. 1997;
International HIV/AIDS Alliance 2003; Ostrom et al.
2006). However, a recent quantitative study conducted in
the same region also indicated that households with
orphans tended to receive more assistance from neighbours
than households with non-orphans (Yang et al. 2006). The
authors gave their understanding that this might be due to
the increased empathy for households in which children
have lived through the illness and death of a parent. To our
understanding, one possible reason is that most families did
not disclose their HIV/AIDS status to the community.
Villagers in the community only knew children’s parents
got sick or died from drug use. Because drug use was a
common occurrence in some villages, people seemed to be
accustomed to this and showed few manifestations of
stigma and discrimination. In addition, some characteristics
among the Jingpo minority may contribute to the non-
discrimination towards people living with HIV/AIDS.
Jingpo people tended to be more cognizant of the need of
these children. Although data from our study indicates that
stigma against children from HIV/AIDS-affected families
appears not prevalent, intervention programs should not
ignore this aspect.
Our study has several potential limitations. First, the
participation of younger children was limited by the lan-
guage expression requirement to answer questions by
themselves. Due to limited ability in oral expression,
younger children might be less able to express their emo-
tions than older children. Therefore, results of the current
J Child Fam Stud (2009) 18:21–30
study may be more generalizable to an older children
population. An additional limitation is that the children
were accompanied by their caregivers to our interviews.
Although they were interviewed separately, children might
have still been hesitant to discuss particular issues in depth,
knowing their caregivers were nearby. Finally, our study
was conducted in Yunnan province, with most HIV cases
infected through intravenous drug use. It is likely that the
psychosocial issues and experiences of the participants
may differ from those children whose parent got infected
through other modes of transmission. Despite the dispari-
ties, our findings still apply to most affected children and
can inform the development of interventions that promote
care and support of children affected by HIV/AIDS.
Acknowledgements This study was funded by NIH grant number
1U2R TW006918-01, China Multidisciplinary AIDS Prevention
Training Program (China ICOHRTA, with Principal Investigator
Zunyou Wu). We are grateful to all the children and their caregivers
who so willingly participated in this study, as well as our collabora-
tors in local Longchuan County CDC.
References
Alubo, O., Zwandor, A., Jolayemi, T., & Omudu, E. (2002).
Acceptance and stigmatization of PLWA in Nigeria. AIDS Care,
14, 117–126.
Ankrah, E. M. (1993). The impact of HIV/AIDS on the family and
other significant relationships: The African clan revisited. AIDS
Care, 5, 5–22.
Atwine, B., Cantor-Graae, E., & Bajunirwe, F. (2005). Psychological
distress among AIDS orphans in rural Uganda. Social Science &
Medicine, 3, 555–564.
Children’s Behaviour Problems Research Group (1993). Children’s
behavioural problems and their influencing factors: A collabo-
rating survey of 24013 subjects in 22 cities in China. Chinese
Mental Health Journal, 7, 13–15.
Dye, J. F., Schatz, I. M., Rosenberg, B. A., & Coleman, S. T. (2000).
Constant comparison method: A kaleidoscope of data. Practicing
Qualitative Research. Available online: http://www.nova.edu/
ssss/QR/QR3-4/dye.html. Accessed 10 March 2006.
Forehand, R., Steele, R., Armistead, L. P., Morse, E., Simon, P., &
Clark, L. (1998). The Family Health Project: Psychosocial
adjustment of children whose mothers are HIV-infected. Journal
of Consulting and Clinical Psychology, 66, 513–520.
Foster, G. (2002). Beyond education and food: Psychosocial well-
being of orphans in Africa. Acta Paediatrica, 91, 502–504.
Foster, G., Makufa, C., Drew, R., Mashumba, S., & Kambeu, S.
(1997). Perceptions of children and community members
concerning circumstances of orphans in rural Zimbabwe. AIDS
Care, 9, 391–405.
Harris, E. S. (1991). Adolescent bereavement following the death of a
parent: An exploratory study. Child Psychiatry and Human
Development, 21, 267–281.
International HIV/AIDS Alliance (2003). Building blocks: Africa-
wide briefing notes. Available online: http://synkronweb.aids
alliance.org/graphics/secretariat/publications/bbe30103_bb_
psychosocial_support_eng.pdf. Accessed 12 January 2006.
Lee, R. P. L., Ruan, D., & Lai, G. (2005). Social structure and support
networks in Beijing and Hong Kong. Social Networks, 27,
249–274.
29
Li, L., Sun, S., Wu, Z., Wu, S., Lin, C., & Yan, Z. (2007). Disclosure
of HIV status is a family matter: Field notes from China. Journal
of Family Psychology, 21, 307–314.
Makame, V., Ani, C., & Grantham-Mcgregor, S. (2002). Psycholog-
ical well being of orphans in Dar El Salaam, Tanzania. Acta
Paediatrica, 91, 459–465.
Marshall, M. N. (1996). Sampling for qualitative research. Family
Practice, 13, 522–525.
Molzahn, A. E., & Kikuchi, J. F. (1998). Children and adolescents of
parents undergoing dialysis therapy: Their reported quality of
life. ANNA Journal, 25, 411–417.
Moneyham, L., Seals, B., Demi, A., Sowell, R., Cohen, L., &
Guillory, J. (1996). Experiences of disclosure in women infected
with HIV. Health Care Women International, 17, 209–221.
Murphy, D. A., Roberts, K. J., & Hoffman, D. (2002). Stigma and
ostracism associated with HIV/AIDS: Children carrying the
secret of their mothers’ HIV-positive serostatus. Journal of Child
and Family Studies, 11, 191–202.
Ntozi, J. P. (1997). Effect of AIDS on children: The problem of
orphans in Uganda. Health Transitions Review, 7, S23–S40.
Nyambedha, E. O., Wandibba, S., & Aagaard-Hansen, J. (2003).
Changing patterns of orphan care due to the HIV epidemic in
western Kenya. Social Science & Medicine, 57, 301–311.
Ostrom, R. A., Serovich, J. M., Lim, J. Y., & Mason, T. L. (2006).
The role of stigma in reasons for HIV disclosure and non-
disclosure to children. AIDS Care, 18, 60–65.
Raveis, V. H., Siegel, K., & Karus, D. (1999). Children’s psycho-
logical distress following the death of a parent. Journal of Youth
and Adolescence, 28, 165–180.
Safman, R. M. (2004). Assessing the impact of orphanhood on Thai
children affected by AIDS and their caregivers. AIDS Care, 16,
11–19.
Sameroff, A. J., & Mackenzie, M. J. (2003). Research strategies
for capturing transactional models of development: The
limits of the possible. Development & Psychopathology, 15,
613–640.
Sandler, I. N., Ayers, T. S., Wolchik, S. A., Tein, J.Y., Kwok, O.M.,
& Haine, R. A. (2003). The family bereavement program:
Efficacy evaluation of a theory-based prevention program for
parentally-bereaved children and adolescents. Journal of Con-
sulting and Clinical Psychology, 71, 587–600.
Sengendo, J., & Nambi, J. (1997). The psychological effect of
orphanhood: A study of orphans in Rakai district. Health Transit
Review, 7(Suppl.), 105–124.
Siegel, K., & Gorey, K. (1994). Childhood bereavement due to
parental death from acquired immunodeficiency syndrome.
Developmental and Behavioral Pediatrics, 15, S66–S70.
Sroufe, L. A., & Rutter, M. (1984). The domain of developmental
psychopathology. Child Development, 55, 17–29.
UNAIDS & UNICEF. (2004). Children on the brink 2004. A joint
report of new orphan estimates and a framework for action.
Available online: http://www.unicef.org/publications/files/cob_
layout6-013.pdf. Accessed 19 March 2006.
UNICEF. (2007). Enhanced protection fro children affected by
AIDS. Available online: http://www.unicef.org/publications/
files/Enhanced_Protection_for_Children_Affected_by_AIDS.pdf.
Accessed 19 March 2006.
Wolchik, S. A., Tein, J. Y., Sandler, I. N., & Ayers, T. S. (2006).
Stressors, quality of the child-caregiver relationship, and
children’s mental health problems after parental death: The
mediating role of self-system beliefs. Journal of Abnormal Child
Psychology, 34, 221–238.
Woodring, L. A., Cancelli, A. A., Ponterotto, J. G., & Keitel, M. A.
(2005). A qualitative investigation of adolescents’ experiences
with parental HIV/AIDS. America Journal of Orthopsychiatry,
75, 658–675.
123
30
Worden, J. W. (1996). Children and grief: When a parent dies. New
York: Guilford Press.
Wu, Z., Zhang, J., Detels, R., Li, V. C., Cheng, H., Duan, S., Li, Z.,
Dong, L., Huang, S., Jia, M., & Bi, X. (1997). Characteristics of
risk-taking behaviors, HIV and AIDS knowledge, and risk
perception among young males in southwest China. AIDS
Education and Prevention, 9, 147–160.
Xu, W., Ji, C., He, J., Li, H., Zhang, K., & Wang, T. (2004).
Preliminary analysis of conditions of AIDS related orphans in
selected areas in China. Chinese Journal of AIDS/STD Preven-
tion and Control, 10, 416–419.
Yang, H., Wu, Z., Duan, S., Li, Z., Li, X., Shen, M., Mathur, A., &
Stanton, B. (2006). Living environment and school of children
123
J Child Fam Stud (2009) 18:21–30
with HIV infected parents in Southeast China. AIDS Care. AIDS
Care, 18, 647–655.
Yunnan Center for Disease Prevention and Control (2004). HIV/AIDS
epidemic and response of Yunnan. Available online: http://www.
npfpc.gov.cn/aids/%D5%C5%B3%A4%B0%B2%D6%F7%C8%
CE.pdf. Accessed March 19 2006.
Zhang, L. (2006). On the traditions, realities and measures to cope
with problems in China’s family education. Journal of the
Chinese Society of Education, 6, 36–39.
Zhang, Y., Ye, W., Ding, Z., Lu, L., Wang, Z., & Zheng, J. (2002).
Comparison of behavioural problems of children in town and
countryside in east China. Chinese Mental Health Journal, 16,
736–738.