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AIDS Care, 2013

Vol.f4809c9fd48f%40sessionmgr114&vid=0&hid=115
25, No. 4, 430
437, http://dx.doi.org/10.1080/09540121.2012.712661

Community-based mental health counseling for children orphaned by AIDS in China

Joan A. Kaufmana*, Wu Zenga, Liyao Wangb and Ying Zhangc
a
Heller School for Social Policy and Management, Brandeis University, Waltham, MA, USA; bAnhui Academy of Social
Sciences, Hefei, China; cFuyang AIDS Orphans Salvation Association, Fuyang, China

(Received 13 September 2011; final version received 9 July 2012)

There is an urgent need to develop scalable approaches to community-based mental health services for children in
rural China and other developing countries involving task shifting from clinicians to trained community workers.
Evidence is needed about the effectiveness of interventions for children affected by AIDS in rural areas. This
article describes an intervention study aimed at developing, implementing, and evaluating a community-based
counseling program for the AIDS orphans of Fuyang, Anhui Province, an area of central China where a tainted
blood donation scheme infected countless farmers and left many children orphaned by AIDS. In China these
children live in rural settings with no access to mental health services. The authors trained a group of communitybased counselors to provide group counseling sessions focusing on self-awareness and communication and to
provide a basic therapeutic approach for depression and anxiety. The authors conducted a baseline and two
follow-up surveys of 39 children who met the clinical diagnostic criteria for anxiety and depression. There was a
statistically significant improvement for the children on anxiety, but there was no statistically significant
improvement on depression, with greatest gains immediately following the intervention. We demonstrated the
feasibility of task shifting for mental health services in this setting.

Keywords: HIV/AIDS; China; mental health; task shifting; AIDS orphans

Background
Over 33 million people are currently living with
AIDS; 2.6 million became newly infected in 2010,
and the epidemic has created an estimated 16.6
million AIDS orphans (UNAIDS, 2010). UNICEF
defines an AIDS orphan as a child under the age of 18
who has lost one or both parents to the disease
(UNICEF, 2012). In China, the government estimates
that 780,000 people are living with AIDS (China State
Council, 2012), including 7,000 infected children and
an estimated 200,000 AIDS orphans (Beijing Normal
University & One Foundation Philanthropy Research
Institute and UNICEF, 2011). These children are
concentrated in southwest and central China. They
live in rural settings with no access to mental health
services despite higher levels of anxiety, depression,
anger, and depressive disorders, compared to other
children (Atwine, Cantor-Graaae, & Bajunirwe, 2005;
Makame, Ani, & Grantham-McGregor, 2002; Zhao
et al., 2007).
Pragmatic approaches are needed to address the
gap between mental health needs and services in
developing countries (Patel, Saraceno, Kleinman,
2006). In China, there are few mental health services
available outside cities. A study in four provinces (96
urban and 267 rural sites) covering 12% of Chinas
population aged 18 or older, found high prevalence of
*Corresponding author. Email: kaufmanj@brandeis.edu
# 2013 Taylor & Francis

untreated mood and anxiety disorders of whom 8%

had ever sought professional help and 5% had ever
seen a mental health professional. More than 88% of
individuals with nonpsychotic mental disorders had
never received professional help (Phillips et al., 2009).
No similar studies have been conducted for children,
but the absence of mental health professionals serving
adults in rural areas suggests findings would be
similar. Several small studies of Chinese AIDS
orphans have found high rates of depression and
anxiety and some have examined the impact of
psychosocial support in mitigating mental health
problems (Fang et al., 2009; Hong et al., 2009,
2011; Tao, Wu, Duan, Han, & Rou, 2010). However,
none of these studies tested a clinical approach or
evaluated the ability of nonclinicians to deliver
mental health services to children in rural China.
Trained community workers have successfully delivered clinical mental health services for adolescents
in Uganda, Chile, and Indonesia, and India (Bolton
et al., 2003; Bolton et al., 2007; Patel, Araya, &
Bolton, 2004; Patel et al., 2004; Tol et al., 2008). Our
study aimed to test such an approach in rural China.
Fuyang in Anhui Province, central China, was
badly affected by HIV and AIDS as a result of
unclean blood selling practices in the 1990s among
paid plasma donors (Kaufman & Jing, 2002). Many
villagers were infected with the HIV virus and have

AIDS Care 431

since developed AIDS or died. While the primary
route of infection was tainted blood donation, many
villagers, unaware of their HIV infection, infected
spouses and some mothers passed the virus to newborn children. The AIDS Orphan Salvation Association (AOS), a community-based nongovernmental
organization (NGO) in Fuyang working with children orphaned by AIDS, is one of Chinas only
community-based AIDS orphan relief programs,
providing financial and psychosocial assistance and
other services to over 800 affected children and
families. Most of the children served have lost one
or both parents to AIDS (the UNICEF definition),
and some are living with an ill, surviving parent, with
relatives, or with community-based foster parents.
AOS works with the local government, which is a
strong supporter of the organizations programs. The
Chinese government began a free national treatment
program in 2003, that is reaching more of these
villagers with life saving antiretroviral medication
(Dou et al., 2010), but these services do not include
mental health and there remains a critical need
in Fuyang and other communities in China and
elsewhere to provide mental health counseling to
these AIDS orphans. This article describes an intervention study aimed at developing, implementing,
and evaluating a community-based counseling program for the AIDS orphans of Fuyang using trained
nonclinicians.

qualitative interviews were conducted with parents,

teachers, caretakers, and the children to understand
local terminology for childrens mental health problems and functional problems associated with them
(Bolton & Tang, 2002). After the clinical interviews,
each childs case was discussed with the full team of
mental health professionals and assessment was made
of clinical status.
Anticipating our larger planned study, the clinicians administered several standardized mental
health questionnaires (five interviews each) that had
been translated and validated for use in China in
studies of urban and rural children (Liu et al.,
1999; Weine, Phillips, & Achenbach, 1995) to
ascertain ease of use in this rural population, but
the information from these questionnaires did not
contribute to the clinical assessments. Instruments
administered included the child behavior checklist
(CBCL) parents questionnaire for younger children,
the CBCL teachers report form, and the CBCL
child self-report (for older children) (Achenbach,
2001a, 2001b), the Reynolds Anxiety and Depression
Scales (Reynolds & Richmond, 1985), and the
Strengths and Difficulties Questionnaire (Goodman,
1997; Goodman, Meltzer, & Bailey, 2003). The CBCL
instruments were too lengthy for use in this rural
setting; the shorter Reynolds scales worked best in
terms of length of interview. The authors determined
using similar short screening instruments would be
most effective for assessing impact of our planned
counseling intervention.

Preliminary studies
Two of the authors conducted a situational analysis
of AIDS orphans and current mental health services
in Fuyang in 2005. That study examined AOSs
programs as well as those of other NGOs and
government assistance programs and made recommendations for the provision of counseling services
for the children (Petrow, 2005). In 2006, the authors
worked with mental health professionals who were
not AOS staff, to conduct clinical assessments of 30
Chinese AIDS orphans served by AOS (Petrow &
Kaufman, 2006), selected by the AOS director as
children who could be conveniently located and who
she believed were most in need of mental health
counseling. The intent was to diagnose mental health
problems for planning an intervention study. Parent/
caretaker assent for participation was obtained prior
to interview. Three child psychiatrist/psychologists
(one from USA and two from China), and two
Chinese psychiatric nurses assessed the children
through one-on-one clinical interviews and standard
mental health assessment tools for children and also
used kinetic family drawing and games. In-depth

Results

preliminary studies

The assessments revealed that most children were

suffering from depression with varying levels of
severity and generalized anxiety. Problems included
difficulties with peer relationships, guilt, sadness,
reluctance to speak, crying alone, headaches, stomachaches, nightmares, trouble concentrating,
and fatigue. Childrens household duties increased
when parents were ill, children constantly worried,
frequently dreamed about their dead parent, were
fearful and anxious about surviving parents health,
made extreme efforts not to worry their parents such
as not discussing problems or feelings or letting them
see them cry. Some children avoided school; for
children in school, some were overly focused on
grades and performance in order to reduce concerns
of ill parents about their futures. Many children
reported poor concentration and distraction in
school, preoccupied by thoughts about their parents
health or a parent who had died. Children feared
expressing feelings because this could upset others,
including parents. Children faced high parental

432 J.A. Kaufman et al.

expectation (house work, good grades) which
stifled willingness to express emotions. When asked,
children were interested in joining a counseling group
and conveyed relief after discussing their situation
and expressing feelings, often for the first time ever,
with mental health professionals. These interviews
shaped the choice of therapy for the subsequent
study.
The mental health professionals recommended
clinical intervention for anxiety and depression using
a group format because it would allow the children
to form connections and foster a situation where they
could depend on each other in the future. Group
connections and feelings of belonging to family and
kinship groups (clan, extended family) are culturally
valued in rural China. Moreover, group structures
might create an environment where children who are
coping well could share strategies. A group counseling approach using interpersonal therapy (IPT) in
Uganda, delivered by lay workers (Bolton et al.,
2003), provided a potential model for replication in
China.

Current study
Between December 2007 and May 2009, the authors
undertook a study of a time-limited group therapy
delivered by trained community-based workers
without formal psychological training (task shifting).
To demonstrate feasibility for use in rural China, the
authors collected fidelity measures of adherence to
the training session guides while assessing the counseling impact on depression and anxiety in the
children.

Methods
The study design consisted of a baseline screening for
depression and anxiety prior to intervention followed
by two postintervention follow-up assessments
using the same diagnostic tools. The two follow-up
assessments were carried out approximately 6 and
12 months after the baseline screening.

Sample selection and informed consent procedures

The Fuyang Health Bureau and CDC provided
ethical review for the study. For the baseline survey,
the AOS Director contacted school principals in
communities near Fuyang with the highest concentration of AIDS orphans served by AOS and
obtained agreement to administer the screening
questionnaires at school. The study team screened
314 children aged 11 years or older (187 girls and 127

boys) in Fuyang in late 2007
early 2008. Children

from AIDS (many from AOS households) and
nonAIDS families (identified as at-risk by teachers
and principals due to prolonged absence of their
parents due to economic migration to cities) were
surveyed; the AIDS orphans were not singled out in
order to avoid stigma. For children identified at risk
for mental health problems based on the screening,
the study team went to childrens households to
obtain informed written consent from parents/
caretakers to participate in the counseling program.
Consent forms and procedures were determined to be
satisfactory by NIH review. The study was explained
and caretaker consent for all children under 16 years
was obtained as well as children assent, in addition to
childs signed consent for children aged 12 or older.
Parents/caretakers were assured there would be no
consequence from nonparticipation in the study and
children could refuse to answer any questions.
Instruments and scales
Two short instruments were used for screening for
depression and anxiety: the child anxiety and related
emotional disorders (CARED) rating scale and the
depression self-rating scale for children (DSRSC),
both validated for use in China in previous studies
(Su, Gao, & Yu, 2006; Su, Wang, Zu, Luo, & Yang,
2003; Wang & Su, 2002). The DSRSC is an 18 item
self-report questionnaire. A score of 15 or greater
indicates clinical depression (Su et al., 2003). The
screen for child anxiety and related emotional disorders (SCARED) rating scale is a 41 item self-report
questionnaire. A total score of 23 or greater may
indicate an anxiety disorder; a score of 30 is more
specific (Wang & Su, 2002).
The authors analyzed the baseline screening data
from all 314 children, including AOS and nonAOS
children, and used the anxiety and depression scores
to select children for the counseling program. The
screening found 81 children with depression and 145
with anxiety. There were 159 children with either
depression or anxiety, representing 61% of all children with fully completed questionnaires. Of these
children, the 45 AIDS orphans served by AOS were
selected for the intervention. Impact of the counseling
intervention was assessed using the same two instruments after each round of counseling. The first
follow-up survey was done in summer of 2008: 39
of the AOS children (those who could be easily
located) who had undergone the counseling sessions
were interviewed. The second follow-up survey was
conducted in early 2009 after the second round of
counseling sessions were finished: 34 AOS children
who had taken part in the counseling sessions (two

AIDS Care 433

children could not be located) were interviewed.
Five in-depth interviews with children who could be
conveniently located and with the counselors were
also conducted to ascertain their experience with the
counseling sessions. The study team collected indicators to monitor fidelity to the counseling curriculum
and intervention.

The counseling intervention

The psychiatric nurses who did the preliminary
assessments developed the counseling intervention,
adapted from a curriculum the nurses were using with
family survivors of suicide victims (at the Beijing
Suicide Prevention and Research Center & World
Health Organization Collaborative Suicide Research
Prevention and Training Center, 2007), and they
incorporated basic therapeutic approaches for depression and anxiety from the group IPT clinical
approach used in Uganda (Bolton et al., 2003, Beijing
Suicide Research and Prevention Center, Huilongguan Hospital, 2007; Mufson, Dorta, Moreau, &
Weissman, 2004; Weissman, Markowitz, & Klerman,
2000; Wilfley, MacKenzie, & Welch, 2000). The
curriculum and session activities were detailed and
manualized for training the counselors and for
supporting fidelity to the curriculum.
The curriculum, consisting of six 90-minute
sessions (knowing self; feelings and emotions, loss
and bereavement, problem solving and making
friends, communicating and listening, physical and
psychological safety for self and others), aimed to
improve communication skills for children and caretakers and reinforce childrens self-esteem including
two joint sessions with caretakers. Two sessions for
caretakers consisted of communicating with children,
dealing with loss and change. Sessions involved role
play (youxi), interactive games and activities like
singing and drawing and using matchsticks and
activities in which the counselors observed the
childrens responses and ideas. For example, the
session aimed at helping children know themselves
and trust others required the children to name their
groups, make a group icon, agree on a group pact,
make a poster, all sign it and place on the door to the
counseling room. A photo of the door icons is
attached as Figure 1. In other sessions they used
games like untying the knot to help children
express blocked feelings.
Counselors were recruited by AOS using criteria
developed by the study team.1 The AOS Director
identified seven persons (four university students and
thre teachers from local schools) who met the
selection criteria and included two new AOS staff

who were hired for the counseling service. The

psychiatric nurses trained the community-based
counselors (male and female). Several school principals also participated to learn how to support
children in their schools. After the training, eight
individuals were selected to serve as the counselors.
Refresher training preceded the second round of
counseling.
Two rounds of counseling (six sessions in round
one, four sessions in round two, once a week for
90 minutes) were carried out over a one-year period
for 39 of the 45 AOS children selected for the study
(six children had left the area). The first round of
counseling began in March 2008. The second round
began in early 2009. All sessions were held at the AOS
Saturday morning activity center. Three groups were
constructed based on age (all children were 11
17),
gender (two same and one mixed gender), grade
(younger or older). Each group was led by two
counselors, one primary, and the other as co-leader
or assistant. The girls group (Sunny Group) had
12 girls, the boys group (Brave Group) had 14 boys, a
mixed gender group of younger children (aged 11
13)
(Wise Group) had 13 children.
The counselors wrote a summary of each session,
recording any difficulties in group dynamics and
action taken. A process information form was used
to assess fidelity to the curriculum and session plans,
topic and purpose of the session and activities
employed, and included the name of the counselors,
number of children assigned to the group, date and
session number (one to six) and counseling round
(one or two), attendance and names of absent
child(ren), length of the session, whether anyone
else besides the children and counselors attended.
Counselors had bi-weekly supervision phone calls
with the nurses in Beijing to discuss problems and the
nurses were available by phone.

Results
The statistical analysis focused on 39 children who
completed the baseline survey, two rounds of counseling and postsession surveys. Scores in depression
and anxiety were generated for each round of survey
(baseline, round one and round two), based on
responses to DSRSC and CARED. Paired t-test
was used to test the differences of the scores in
depression and anxiety between baseline and the
first round survey. After we completed the second
round survey, fixed-effects regression model was used
to compare differences in depression and anxiety
between baseline and the first round survey, between
baseline and the second round survey, and between

434 J.A. Kaufman et al.

Figure 1. Photos of the door designs created by the children in the counseling groups for the mental health counseling project:
Wise Group (Zhihui Zu), Brave Group (Boys) (Yonggan Dui), and Sunny Group (Girls) (Yangguannuhai).

the first and second round survey for children who

scored in all three rounds of survey. The analysis was
conducted with STATA 11.0 (StataCorp LP., Texas).
Given the baseline screening results, with one baseline
screening and two rounds of follow-up assessment,
a sample size of 39 was able to detect 4.4 points and
2.4 points of reduction of scores in anxiety and
depression respectively with statistical power of 80%.
Comparing the anxiety and depression scores of
the children before and after the first round counseling, there was a statistically significant improvement
for the children on anxiety (t[25]3.01, p 0.006),

but there was no statistically significant improvement

on depression (Table 1). In our first follow-up survey,
the authors found statistically significant improvement in the children in scores on anxiety (6.0 point
reduction) and depression (1.2 point reduction).
During the second follow-up survey, two childrens CARED questionnaires were unusable due to
missing items. Thus the sample size was further
reduced from 26 to 24. The second follow-up survey
showed much smaller improvements, because the
initial impact was great, fulfilling a big unmet need
initially, so further improvements were more modest.

Table 1. Scores in anxiety and depression.

Scores on

Baseline

First follow-up

Observations

Anxiety
Depression

29.88910.08
13.8795.83

23.8899.44
12.7095.18

26
30

t Value
3.01*
1.22

Notes: the number of observations are less than 39 (the number of children undergoing the counseling sessions) due to childrens
incompleteness of answering survey questions.
*pB0.01.

AIDS Care 435

For 24 children who completed the survey questionnaires without any missing items, for the baseline
survey, the anxiety score was 29.91. With the first
counseling intervention, the anxiety score was reduced to 24.29. After the second counseling sessions,
it was further reduced to 21.41 (Figure 2). The
authors used a score of 23 as a cut-off recommended
by Wang and Su (2002) to categorize children as
having a problem of anxiety. There were 75% of
children with anxiety in baseline. This was reduced to
50 and 39.50% after two rounds of counseling. There
is a statistically significant difference between baseline
and round 1(t2.96, p 0.005), and baseline and
round 2 (t4.47, pB0.001), but not round 1 and 2
(F  2.29, p0.14).
There were 30 children with complete information
for depression from baseline and two follow-up
surveys. The baseline depression score was 13.87,
and became 12.70 and 12.46 after the two rounds of
counseling intervention (Figure 2). Using the cut-off
of 15, suggested by Su et al. (2003) to categorize
children as depressed or not, 50% of the children
were depressed at baseline, and this was reduced to
43.33 and 40.0% after two rounds of counseling.
There is no statistically significant difference between
the baseline survey and the first counseling intervention (t1.30, p0.20), or between the baseline
survey and the second counseling intervention
(t1.56, p0.12), or between the two rounds of
counseling (F 0.07, p 0.07). However, the significance for the difference between baseline and the
second counseling was borderline, showing a likely
positive effect of the counseling.

Discussion
Our small study demonstrated the feasibility of
providing mental health counseling using trained
30

Scores inanxietyanddepression

Depression
Anxiety

25
20
15

community-based counselors for children in poor

areas like Fuyang where no trained mental health
professionals exist. Such services are needed not only
by children orphaned by AIDS but by other children
with stressful life circumstances. Our study focused
on AIDS orphans because our service intervention
was done through AOS, but our screening survey
identified large numbers of other children in need of
services in this rural community
particularly those
with absent migrant parents. Effective models of lay
counseling could help to fill the huge gap in mental
health services in China and elsewhere. In addition to
our statistical results, the feedback from the counselors, AOS staff, teachers, and parents was positive
and they saw noticeable changes in the children who
participated in the counseling sessions, in their willingness to communicate about their feelings and the
bonding they developed with the children in their
groups and with the counselors who led the groups.
However, our study did not include sufficient
involvement of caretakers and surviving parents to
support the interventions with the children. Two joint
sessions were useful, but insufficient for ensuring the
needed communication with and support for children.
The authors also recognized the need to narrow the
age range for the groups to promote more effective
group dynamics. Other children, not only AIDS
orphans, need mental health support in rural China,
and approaches that do not single out AIDS orphans
from other children will likely lead to less stigma and
more benefit to the community. On the basis of this
small study, the authors propose that school-based
counseling approaches are a pragmatic way to reach a
wider group of rural Chinese children in need of
mental health support. In addition to our group
counseling approach, ad hoc services are also needed
to deal with stressful events as they arise for
individual children.

Implications
Our small study demonstrated the feasibility and
effectiveness of providing counseling using trained
community workers in this setting. Further research is
needed to test such interventions at scale and to
advocate for pilot studies in other countries with
similar shortages of trained mental health workers.

10

Acknowledgements

5
0
Baseline

First follow up Second follow up

Figure 2. Scores in anxiety and depression.

The authors gratefully acknowledge the assistance of the

psychiatric nurses from Huilongguan Hospital in Beijing,
Zhang Xiaoli (who tragically passed away before the study
was completed), Meng Mei and Wang Yaxin, who conducted the mental health assessments in Fuyang, developed

436 J.A. Kaufman et al.

the curriculum, and trained the Fuyang community-based
counselors, Elizabeth Shea, clinical psychologist, who
participated in the preliminary study, and Marlys Bueber
who assisted in developing the curriculum and training
materials. The authors thank the staff of AOS for facilitating the study, the principals of the schools in Fuyang for
allowing us to conduct the studies at the schools, and the
families and children who participated in the baseline study,
the counseling intervention and the follow-up surveys. The
authors are grateful to Johnson and Johnson, the ZeShan
Foundation and to the Aaron Diamond AIDS Research
Center for providing funding to different phases of the study.

Note
1. Positive attitude toward persons with AIDS and children; accepting and nonjudgmental, interactive and
engaging; empathetic, open, warm interactions with
children, children can trust them and feel safe with
them; can adapt to nonauthoritarian or nondirective
approach in group work, not telling children how to
think or act; can adhere to the training principles and
methods that will be taught to them; not the teachers of
the AOS students.

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