ARTICLE
Children of Mothers With HIV/AIDS: Unmet Needs
for Mental Health Services
Laurie J. Bauman, PhDa, Ellen J. Silver, PhDa, Barbara H. Draimin, DSWb, Jan Hudis, MPHb
aDepartment of Pediatrics, Albert Einstein College of Medicine/Children’s Hospital at Montefiore, Bronx, New York;bFamily Center, New York, New York
The authors have indicated they have no financial relationships relevant to this article to disclose.
ABSTRACT
OBJECTIVE.The objective of this study was to use multiple measures and sources to assess mental health over time in uninfected 8- to 12-year-old children of HIV-positive mothers.
METHODS.We recruited from the New York City Division of AIDS Services and Income Support a consecutive sample of 157 single mothers who were living with an HIV-negative child aged 8 to 12. Families were randomly assigned to receive a custody planning intervention, Project Care, or standard care. Data were collected at baseline and 4 subsequent times 6 months apart. Children completed the Children’s Depression Inventory; 8- to 10-year-olds completed the Terry, and 11-to 12-year-olds completed the Youth Self-Report. Mothers completed the Child Behavior Checklist. Each measure has a validated cutoff score to signify clinically significant symptoms.
RESULTS.All 5 data points were available on 129 (82%) children. During 2 years, every child had a score in the clinical range (12% once, 25% twice, 26% 3 times, 27% 4 times, and 9% all 5 times). Clinically significant symptoms were most likely at baseline when mothers were sickest. Few had clinically significant symptoms based on maternal report only (5%) or child report only (8%). Chronicity of clinically significant symptoms was not related to child age or gender, maternal health or depression, parent-child relationship, or being assigned to Project Care. Although two thirds of the children received mental health services during the study, ⬍25% did at any 1 time, and 28% of children with chronic clinically significant symptoms never received care.
CONCLUSIONS.Children who are affected by AIDS should be routinely screened for psychiatric problems by using multiple measures and sources to avoid underiden-tification and be carefully monitored long-term.
www.pediatrics.org/cgi/doi/10.1542/ peds.2005-2680
doi:10.1542/peds.2005-2680
Portions of this work were presented at the annual meeting of the Pediatric Academic Societies; May 3– 6, 2003; Seattle, WA; and the National Institute of Mental Health Annual Conference on the Role of Families in Preventing and Adapting to HIV/AIDS; July 23–25, 2003; Washington, DC.
Key Words
child mental health child behavior maternal HIV/AIDS longitudinal
Abbreviations
DASIS—Division of AIDS Services Income Support
CBCL—Child Behavior Checklist CDI—Children’s Depression Inventory YSR—Youth Self-Report
CSS— clinically significant symptoms PSI—Psychiatric Symptom Index IPPA—Inventory of Parent and Peer Attachment
Accepted for publication Jan 30, 2007
Address correspondence to Laurie J. Bauman, PhD, Albert Einstein College of Medicine, Jack & Pearl Resnick Campus, 1300 Morris Park Ave, Van Etten 6B25, Bronx, NY 10461. E-mail: bauman@aecom.yu.edu
M
OST OF THEwomen who are living with HIV/AIDS in the United States are mothers1whose childrenrely on them for their care.2These children face
extraor-dinary challenges to their mental health and adjustment. Their parents may be too ill to attend to their needs; almost half (45%) of mothers have symptoms consistent with a psychiatric disorder, a known risk factor for poor child mental health; 10% need drug or alcohol treat-ment; and 1 in 4 lacks key elements of social support.1
Changes in the HIV pandemic have important social and psychological implications for children of mothers with HIV/AIDS. The number of at-risk children whose mothers have HIV/AIDS is likely to grow in the next decade. First, the length of survival of people with HIV/ AIDS has increased dramatically with the introduction of highly active antiretroviral therapy,3 and children will
spend more of their formative years in a home with an HIV-positive mother. Second, 84% of women with HIV are of childbearing age,4 and most acquired the virus
through unprotected heterosexual intercourse.3 New
pregnancies are likely to increase the number of children who are cared for by infected women. Third, the number of new cases of HIV/AIDS among women is growing; the HIV epidemic is spreading at a faster rate among women than men, especially among younger women.5Although
it is still necessary to plan for the increasing numbers of AIDS orphans,6,7we must also acknowledge the
increas-ing number of HIV-infected mothers who will be raisincreas-ing uninfected children.
Children of mothers with HIV/AIDS may be at high risk for psychological disturbance. Studies on the mental health of HIV-negative children of HIV-positive mothers have focused on internalizing (eg, depression, anxiety) and externalizing (eg, conduct problems) symptoms and have found that children of HIV-positive mothers tend to exhibit heightened levels of both types of problems.8–18
Studies that have examined attention problems and cog-nitive and social competence have also found that chil-dren of parents with HIV have more problems in these areas.11–13 However, some research has not shown an
association between parental HIV/AIDS and problems in child functioning.19–22
Existing literature on the mental health of children whose parents have HIV is limited in several ways. Most studies have relatively small sample sizes and large age ranges, use cross-sectional data, and rely on parent or caregiver report only. The goal of this study was to measure the mental health of children who were aged 8 to 12 and whose mothers had late stage HIV/AIDS using multiple measures, 2 sources of information, and data during a 2-year period. Several studies have reported the cumulative prevalence of child psychiatric diagnoses in general populations of children not affected by parental HIV. Costello et al23found that 36.7% of children aged 9
to 13 had received at least 1 psychiatric diagnosis by age 16; similar rates were found in studies done in New
Zealand24(38.3%) and New York25(39%) using different
populations and measures. Other children at high risk have been documented to have much higher rates of disorder than the general population of children. For example, estimates of psychiatric disorder in low-income children ranges from 17% to 26%26–28; in homeless
chil-dren from 32% to 78%,29,30 and for children in foster
care from 54% to 80%.31,32We hypothesized that
inner-city children of mothers with HIV/AIDS would have more risk factors for poor mental health and demon-strate higher burden of psychological symptoms.
METHODS
We recruited a consecutive sample of 220 women from the New York City Division of AIDS Services Income Support (DASIS). New York City provides a package of financial services, housing, and home care to people who have HIV or AIDS and meet income criteria (eligi-bility for Medicaid in New York State) and medical cri-teria (including diagnosis of AIDS or late-stage HIV dis-ease and need for home care assistance). DASIS estimated that⬎95% of eligible people with AIDS actu-ally receive services; therefore, our sample of women was reasonably representative of poor mothers with late-stage HIV/AIDS in New York City.
We recruited women who first entered DASIS ser-vices between June 1996 and June 1998 to participate in Project Care, a 2-group randomized trial of a custody-planning intervention provided by the staff of The Fam-ily Center.33Data for this article were from the baseline
leaving a final sample of 129 (82%). Neither attrition rates nor background characteristics of those who were lost to follow-up differed between the experimental and control groups.
Measures
Child Mental Health
We used multiple measures and both maternal and child report to assess child mental health. Mothers completed the 118-item Child Behavior Checklist (CBCL)34 of
be-havioral problems that provides a total score as well as internalizing and externalizing subscales and 9 symptom subscales. We used the recommended T-score transfor-mations of the raw behavior scores, which adjust for age and gender differences in behavior found in normative samples. A T score of⬎63 on the total score (the highest 10th percentile) or a score above the 97th percentile on any individual subscale indicates clinically meaningful symptoms.
All children completed the Children’s Depression In-ventory (CDI).35,36This self-report scale has 27 items and
is designed for use in school-aged children and adoles-cents. Cronbach’s␣has ranged from .71 to .87 in various studies and has been demonstrated to be reliable.36The
CDI is the most widely used self-report measure of de-pression in children. Normative data are available from psychiatric, pediatric, and school-based populations. A CDI score ofⱖ12 was used as the cut point to indicate clinically significant levels of symptoms.36–38
Children aged 8 to 10 years also completed the Ter-ry,39,40a pictorial-based self-report that is a reliable and
culturally sensitive version of the Dominic-R.41,42 The
Dominic-R was designed to assess mental health symp-toms and disorders in children 6 to 11 years of age by using established psychiatric criteria. It depicts a child named Dominic facing situations in the daily lives of children either in single pictures or in a set of drawings on the same page; sometimes Dominic is shown alone and sometimes with peers or adults. The interviewer reads aloud sentences about the visual stimulus that are also printed at the top and the bottom of the page so that the child who hears them can also read along. Because the Dominic-R was created and validated only for white children, the authors also developed and validated the Terry to depict a black character in identical situations. The situations and sentences are both positive (eg, Do you feel good at school, like Terry?) and negative (eg, Do you worry a lot about how you look, like Terry?) The child’s response “yes” or “no” is recorded. The manual provides criteria for determining presence of psychiatric disorder in 7 separate domains.
Children aged 11 to 12 years completed the Youth Self-Report (YSR) of externalizing and internalizing be-haviors.34The YSR, the child version of the CBCL, is a
widely used instrument that provides data on a broad
range of symptoms. It is appropriate for ages 11 through 18 years. It provides a total score, internalizing and externalizing subscales, and 8 syndrome scores. Psycho-metric data show reliabilities consistently above 0.80 in multiple data sets. The tool is sensitive and specific for identifying children and adolescents with clinically sig-nificant symptoms (CSS). We used the same criteria for the YSR as we used for the CBCL (ie, a total T score⬎63 [90th percentile] or a score above the 97th percentile on any individual subscale indicates CSS). Children who turned age 11 during the study were switched from the Terry to the YSR.
Children’s Mental Health Service Use
We assessed service use at each time period by asking mothers whether in the last 6 months the index child had received any counseling for a mental health or behavioral problem.
Background Variables
We assessed sociodemographic variables through mater-nal interview and included her age, race/ethnicity, birth place, educational level, employment, and source of in-come, as well as the child’s age and gender. We also asked mothers to report their use of marijuana/hashish, cocaine, crack, amphetamines/stimulants, inhalants (eg, glue, toluene, paint thinner), heroin, methadone (non-prescription), or any other drug in the past and in the last 6 months. Mothers were classified as never having used drugs, a past user, or a current user at baseline.
Maternal Physical Health
In the maternal interview, we obtained information on a range of physical health items, including time since the mother first learned about her HIV, her most recent T-cell count, whether she had experienced HIV-related health problems or opportunistic infections, whether she took protease inhibitors and/or drug “cocktails,” and numbers of hospitalizations and days spent in bed be-cause of her health. We also asked whether she experi-enced limitations or restrictions on her work, house-work, mobility or physical activity, or any other activity and whether she rated her health these days compared with others as excellent, very good, good, fair, or poor.
Maternal Mental Health
We used the Psychiatric Symptom Index (PSI)42 total
score as a measure of maternal psychological distress at each of the study time points. The PSI used a 4-point scale (“never” to “very often”) to assess frequency of 29 common complaints or symptoms during the past 2 weeks. The PSI has excellent concurrent validity with criteria indicating psychological distress, such as help-seeking and use of psychoactive drugs.42Although
clini-cians.43 Moreover, in previous research with inner-city
mothers, PSI total scores ⬎30 had a sensitivity of 90% and a specificity of 58% when compared with a diagno-sis of major depressive disorder obtained using a struc-tured psychiatric interview.44 Therefore, we used this
cutoff score to classify each mother as to whether she was likely to be clinically depressed at each assessment.
Parent-Child Relationship
The child’s interview included a revised version of the Inventory of Parent and Peer Attachment (IPPA),45
which is a self-report measure that assesses perceptions of the quality and security of attachments with parents and friends. We used only the 28 IPPA items that eval-uated positive and negative aspects of the parent-child relationship. These items measure the degree to which the child trusts that the parent understands and respects his or her needs and is responsive and helpful with concerns.45 Examples of its items are, “When we talk
about things, my mother listens to what I say,” and, “I get upset a lot more than my mother knows.” We re-duced the number of response categories from 5 to 3 to make it easier for younger children to answer, because the original IPPA was designed to be administered to older adolescents (16 –20 years). The response categories used were almost never, sometimes, and almost always.
Data Analyses
Each child mental health measure that we used has validated cutoff scores for CSS, which are types, fre-quency, or severity of emotional or behavioral symp-toms that warrant evaluation and treatment by a clini-cian. We calculated whether the child had CSS on any measure at each time point. A “chronic” mental health problem was defined as CSS atⱖ3 of the 5 time points. We used cross-tabulation and 2 analyses to deter-mine whether the percentages of children with CSS differed by child age or gender, mother’s drug use his-tory, or assignment to Project Care or the control group. We also used2analyses to examine the relationship of CSS to presence of chronic difficulties in maternal phys-ical and mental health and in the parent-child relation-ship. For these analyses, mother’s physical health in-cluded the maternal self-rating of health status and her reported T-cell count. We categorized mother’s health rating as poor to fair versus good or better and her reported T-cell count as⬍200 vsⱖ200. Mother’s mental health was categorized as to whether the PSI total score was ⱖ30, which we have noted is a likely indicator of depression. For parent-child relationship, we summed IPPA responses into a total score and then used a median split to dichotomize the sample at each time period, with scores above the median indicating a less close relation-ship. As with child’s clinically significant symptoms, a chronic problem in each area was defined as the moth-er’s having poor health, low T-cell count, likely
depres-sion, or poor parent-child relationship at ⱖ3 of the 5 time points.
RESULTS
The demographic profile of parents in this study reflects the population of New York City families with HIV (Ta-ble 1): most mothers were black or Latina, 45% had not graduated from high school, and nearly three quarters had either a past or a present history of illicit drug use. The average child age was 10.5 years, and 58% were female.
Substantial proportions of mothers reported having problems or difficulties with their health in the year before the baseline survey. At enrollment into the study, the mean length of time since mothers had received their HIV diagnosis was 4.2 years (SD: 3.1), 35% re-ported that their most recent T-cell count was⬍200, and 31% said that they had been hospitalized at least once in the past year. In addition, 31% of mothers rated their health as fair or poor compared with others, 85% expe-riencedⱖ1 activity restrictions because of their health, and 43% said that they had spent all or part of a day in bed in the last 2 weeks (mean number of days: 2.46). Moreover, 45% said that they had experienced HIV/ AIDS-related health problems such as herpes, chronic yeast infections, thrush, candidiasis, or pneumonia. The majority were taking protease inhibitors (74%) and multiple HIV medications (77%).
Table 2 presents the percentage of children with CSS by measure over time. On every measure, more children had CSS at baseline, which is when maternal health data showed that the mothers were sickest. The highest num-ber of children had CSS on the YSR and the CBCL at
TABLE 1 Background Characteristics (Nⴝ157)
Characteristic Value
Maternal age, mean (SD), y 36.3 (5.5)
Maternal race/ethnicity, %
Black 52
Latina 40
Other 8
Education, %
Less than high school 45
High school graduate 30
Some college 18
College graduate or more 7
Activity restrictions, %
0 15
1 15
ⱖ2 70
Drug use history, % 71
Never 26
Past 50
Current 24
Child age, mean (SD), y 10.5 (1.5)
Child gender, %
Female 58
baseline. Overall, on any measure, 79% had CSS at baseline, 59% had CSS at 6 months, 52% had CSS at 12 months, 58% had CSS at 18 months, and 44% had CSS at 24 months.
During the 2-year study period, every (100%) child scored in the clinical range on at least 1 measure for at least 1 data point: 12% scored in the clinical range at 1 time point, 25% at 2 time points, 26% at 3 time points, 27% at 4 time points, and 9% at all 5 time points. Two thirds of children qualified for chronic CSS (3 of 5 time points). Chronic CSS were not significantly related to child age or gender, maternal drug use, or assignment to Project Care or the control group. Chronic CSS also were unrelated to mother’s health (ongoing poor health or low T-cell count), likely maternal depression, or a diffi-cult parent-child relationship. Almost all children with CSS were recognized by both mother and child as having CSS. Only 8% of children were identified as having CSS by their own report and only 5% by their mother’s report only.
No 1 kind of emotional or behavioral problem was dominant. As Table 2 also shows, substantial proportions of children reported having high levels of depressive symptoms on the CDI during the study. We also found that among 8- to 10-years-olds, the most common psy-chiatric diagnosis in those who scored high on the Terry was separation anxiety. On the YSR, slightly more 11- to 12-year-olds scored above the clinical cutoff on internal-izing symptoms than on externalinternal-izing symptoms at most assessments, and the highest proportions of CSS on this measure tended to be found on the somatization and social problems subscales. Compared with the children’s self-reports, parents rated more of these children as hav-ing high externalizhav-ing symptoms such as delinquency and aggression. However, among the internalizing sub-scales, parents also tended to rate more children above the clinical cutoff on somatization and social problems than on other CBCL syndrome subscales, which is sim-ilar to the pattern of child self-rating on the YSR.
Finally, we examined whether children had received counseling for a mental health or behavioral problem at any time during the 2-year study period. Two thirds of children received some mental health services during this period. Fewer than 25% received services at any 1 time period, and, over time, fewer children received care: 22% received care at baseline (79% had CSS), 19%
at 6 months (59% had CSS), 23% at 12 months (52% had CSS), 16% at 18 months (58% had CSS), and 12% at 24 months (44% had CSS). Most children with chronic problems did receive mental health services, but 28% never saw a mental health professional.
DISCUSSION
Every school-aged child of a mother with late-stage HIV/ AIDS had clinically significant psychiatric and/or behav-ioral symptoms during the 2-year study period. In this group of 8- to 12-year-old children whose mothers had HIV/AIDS, two thirds had chronic psychological prob-lems (ie, persistent symptoms at least 3 of the 5 times they were measured). Most children were identified as having CSS by both themselves and their mother, al-though often they did not agree at the same time point or about the precise symptoms. Symptom scores were highest at baseline, when mothers were sickest, and declined over time. On the basis of previous analyses,46
we believe that the decline in symptoms among children is related to improved maternal physical health and mental health over time, although we cannot rule out the possibility that repeatedly measuring symptoms over time might have influenced responses.
The rate of psychological disorder found in this study is higher than in any other study that we found. Only one third of the general population of children studied cumulatively had significant mental health problems. Data on the mental health of other children at high risk, such as those who are in foster care, who are homeless, or who are poor, have not been reported longitudinally. Rates in available studies tended to be approximately half with a disorder, and some report rates as high as 8 in 10.
If a child’s mental health is assessed by parental or child report alone, then many children with serious psychological problems will be overlooked. Psychiatrists recommend that children be assessed by⬎1 reporter and that any reporter’s evaluation of symptoms be consid-ered sufficient for assessment and referral.47On the basis
of this recommendation, children of mothers with HIV/ AIDS should be evaluated by a parent as well as by their own self-report; teacher ratings are extremely valuable as well.
Moreover, children should be routinely screened for behavioral and psychological problems at different times
TABLE 2 Children With CSS Over Time According to Measure
Measure Baseline 6 mo 12 mo 18 mo 24 mo
CDI, % (n) 32.5 (157) 19.8 (135) 22.7 (129) 25.2 (120) 16.7 (114) Terry, % (n) 37.9 (94) 31.1 (59) 31.9 (49) 22.6 (35) 25.0 (15) YSR, % (n) 44.1 (59) 38.8 (70) 16.9 (76) 25.4 (80) 20.3 (85) CBCL, % (n) 56.1 (155) 49.3 (140) 38.2 (136) 35.0 (123) 36.8 (117)
using multiple measures. It is important to recognize that children may not exhibit problems at any 1 time or on any 1 tool. One reason is that children may have symptoms that are elevated but not sufficient to meet criteria for disturbance. More common, however, was that children who seemed to be in the reference range at 1 point in time had high symptom levels at another time. This can be attributable to a sudden new stress, such as a mother’s hospitalization, or to unpredictable or uncon-trollable stressors, such as lack of social support, eco-nomic problems, or violence. It can also be attributable to the ongoing challenges of coping with chronic stress. Children in families in which a mother has HIV/AIDS are highly vulnerable, and any new change or threat is likely to tax their coping and resilience. Within just one 2-year window, a window in which parents were being treated successfully for HIV, every child experienced serious psychological disturbance. This sobering conclusion sug-gests vigilance and intensive assessment and referral.
The type of mental health problem that children expe-rienced varied, although separation anxiety was most com-mon in younger children, and internalizing problems were reported more by children than by their parents; parents reported more conduct problems, a finding consistent with the larger mental health literature. These children of HIV-infected mothers did not exhibit consistent profiles of symptoms across the sample; neither were symptoms con-sistent within individual children over time. This puts an additional burden on health professionals who are looking for ways to target clinical assistance to distressed children. Many children did not receive consistent mental health care. Although most children received some care from a mental health worker, most of these were short-term therapies, and some were group-based, time-lim-ited treatments. Many of those who received mental health services were seen by psychologists or social workers in their schools, who may have difficulty devot-ing intense, long-term assistance to any 1 child. Parents told us that when it was recognized that children needed professional assistance, most had to wait a long time to receive care, and when they finally did see someone, the high staff turnover resulted in children’s seeing multiple providers. Few mental health providers had specialized experience with HIV/AIDS and the challenges that these children were confronting at home. We cannot know from these data how many children would qualify for a diagnosis of psychiatric disorder and how many had elevated psychological symptoms that were appropriate to their situation. However, clinicians agree that a child who is in considerable emotional pain, even if contex-tually appropriate, should be cared for by a professional, both to help the child cope with the current stress and to initiate preventive interventions to reduce the likelihood that symptoms would worsen over time.
This study has several limitations. First, the sample consists of children in New York City, an urban epicenter
of HIV/AIDS, at a time when antiretroviral therapy was just beginning. The findings should be generalized to different populations with great caution. Second, scores on the mental health measures are valid symptom re-ports, but they cannot be used to make diagnoses. Chil-dren in highly stressful situations, such as living with an ill mother, may demonstrate symptoms that are appro-priate given their circumstances. The measures that we used are useful for identifying children whose psycho-logical symptoms are elevated, but only a clinician can determine whether a given child warrants a clinical di-agnosis. Third, we lack a control group and cannot in-terpret the burden of mental health symptoms in this population of children relative to similar children who live in an inner city and whose mothers do not have HIV/AIDS. However, as we noted previously, we did not identify a published study that reported rates of 100% disorder among a general population of children or among children in any high-risk group.
CONCLUSIONS
As the numbers of children who are living with a mother with HIV/AIDS increase, the numbers of children who need routine mental health assessment, referral, and treat-ment will increase as well. These children are hard to target for intervention because the marker for their risk is their mother’s health problem. Adult care providers may not take a family care perspective, and unless there is a system in place to identify and assist children of mothers with HIV/AIDS, they will continue to go unrecognized and un-treated. Pediatricians are in a strategic position to assist children of mothers with HIV, because they often know the maternal health history, they see children over time in their practice, and they can identify and refer children with mental health problems to pediatric mental health services that can address their complex needs.
ACKNOWLEDGMENTS
This research was funded by National Institute of Mental Health grant R01MH55794 (to Dr Bauman).
We thank the field staff who recruited the partici-pants and helped collect the data and the mothers and children who contributed their experiences.
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DOI: 10.1542/peds.2005-2680 originally published online October 22, 2007;
2007;120;e1141
Pediatrics
Laurie J. Bauman, Ellen J. Silver, Barbara H. Draimin and Jan Hudis
Children of Mothers With HIV/AIDS: Unmet Needs for Mental Health Services
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DOI: 10.1542/peds.2005-2680 originally published online October 22, 2007;
2007;120;e1141
Pediatrics
Laurie J. Bauman, Ellen J. Silver, Barbara H. Draimin and Jan Hudis
Children of Mothers With HIV/AIDS: Unmet Needs for Mental Health Services
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