Journal of Pediatric Psychology, Vol. 26, No. 6, 2001, pp. 331-342
© 2001 Society of Pediatric Psychology
Special Section: Children with HIV/AIDS and Their Families |
Psychological Adjustment in Caregivers of School-Age Children Infected With HIV: Stress, Coping, and Family Factors
1 Emory University School of Medicine, 2 St. Louis Children's Hospital, 3 Georgia State University
All correspondence should be sent to Pamela Bachanas, Emory University School of Medicine, Pediatric Infectious Disease Program, 341 Ponce de Leon Ave., Atlanta, Georgia 30308. E-mail: pbachan{at}emory.edu .
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Abstract |
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Objective: To assess for significant differences in psychological functioning between caregivers of HIV-infected children and caregivers of healthy children, and to examine the utility of applying a stress and coping model to caregivers of children with HIV disease.
Methods: Participants included caregivers of HIV-infected children (n = 36) and caregivers of a demographically matched control group of healthy children (n = 32). During their child's pediatric clinic visits, caregivers completed measures of psychological adjustment, stress, coping style, and family resources and support. They also completed a measure of their child's psychological adjustment.
Results: Caregiver psychological distress scores did not significantly differ between the HIV and control groups, and clinically significant rates of psychological distress were reported by more than a third of caregivers in both groups. Hierarchical multiple regression analyses revealed that independent of their child's illness status, stress and coping style were significant predictors of caregiver's psychological adjustment. In addition, caregiver psychological distress was a significant predictor of children's maladjustment.
Conclusions: High rates of psychological distress were observed in caregivers of children with HIV disease; however, similarly high rates of psychological adjustment problems were found in caregivers of healthy children. Caregivers who reported high levels of daily stress and emotion-focused coping styles tended to report more psychological distress. Further, caregivers who reported more psychological distress also reported more internalizing and more externalizing behavior problems in their children, regardless of the child's illness status. These findings reflect the impact of poverty and environmental stress on caregivers' adjustment.
Key words: pediatric HIV; coping; stress; psychological adjustment.
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Introduction |
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Women of childbearing age represent one of the fastest rising groups with HIV infection, and ethnic minorities are disproportionately represented in women and children with HIV (Centers for Disease Control and Prevention [CDC], 1999
). Currently, more than
90% of all reported pediatric HIV cases in the United States are
mother-to-child (perinatal) transmissions
(CDC, 1999). Improvements in
the diagnosis and treatment of pediatric HIV have resulted in declines in the
death rate from AIDS (CDC,
1999), and children are surviving much longer than earlier in the
epidemic. Given these advances in treatment and survival, pediatric HIV
infection is now viewed as a chronic illness.
Children with perinatal HIV infection identify entire families at risk for
psychological difficulties, as they have mothers and possibly siblings who are
also infected. The strain of caring for a sick child while also managing their
own illness and caring for other children and family members is a tremendous
burden for many mothers with HIV disease. Previous studies have shown that
mothers who are HIV-infected have high levels of psychological distress and
depressive symptoms, even when compared to mothers of similar backgrounds
(Biggar & Forehand, 1998;
Miles, Burchinal, Holditch-Davis,
Wasilewski, & Christian, 1997). Although high rates of
psychiatric disorders have been documented in women with HIV, many of the
psychiatric diagnoses predated their HIV diagnosis
(McDaniel, Fowlie, Summerville, Farber,
& Cohen-Cole, 1995).
Due to maternal death, disability from HIV disease, or chronic substance
abuse, many HIV-infected children live with a caregiver other than their
biological mother. For example, one study of long-term survivors found that
only 26% of older children infected with HIV lived with a biological parent
(Grubman et al., 1995).
Despite this, little is known about the psychological adjustment of these
primary caregivers that often include grandparents, other family members, and
foster and adoptive parents. Earlier studies have suggested that these primary
caregivers of children with HIV are at risk for both depressive and anxious
symptomatology due to the multiple losses they have sustained from other
family members dying of AIDS and the burden of caring for an HIV-infected
child with an uncertain future (Hughes
& Caliandro, 1996; Mellins
& Ehrhardt, 1994).
It has been well documented that childhood chronic illness significantly
affects family functioning (Kazak &
Nachman, 1991; Wallander &
Thompson, 1995). In studies of other chronic illnesses in
children, theory-driven, conceptual models have been developed to guide the
research on children and families' coping with a chronic illness. For example,
Thompson and colleagues have developed the transactional stress and coping
model within an ecological-systems theory perspective where chronic illness is
viewed as a potential stressor to which the individual and family system
attempt to adapt (Thompson, Gil, Burbach, Keith, & Kinney,
1993a,
1993b). The illness-adjustment
relationship is a function of the transactions of illness parameters,
demographic parameters, and psychosocial processes such as stress, coping, and
family functioning.
Previous studies of children with chronic illness have shown support for
the relationships between stress, coping, and family adjustment. For example,
it has been suggested that family members' poor psychological functioning is
related to both the number of stressful events experienced and to the family's
resources for coping (Daniels, Moss,
Billings, & Miller, 1987;
Frank et al., 1991). Specific
coping styles have also been associated with psychological adjustment, such
that individuals who use more problem-focused coping strategies may be better
adjusted than those who use more emotion-focused coping strategies
(Folkman, Lazarus, Gruen, & DeLongis,
1986). In addition, social support and family resources have been
found to be an important factor in long-term coping with a chronically or
terminally ill child (Kupst &
Schulman, 1988). These factors seem particularly important for
children and families living with HIV disease, as most of these families live
in inner-city environments and must cope with the stresses of poverty,
violence, and drug use (Mellins &
Ehrhardt, 1994). In addition, many families must cope with their
illness in isolation due to the stigma of HIV disease and their fear of
rejection and abandonment by friends and family. Consequently, many families
may have limited social and emotional support.
In addition to stress and coping factors, Thompson and colleagues posit
that maternal psychological adjustment has a direct effect on the
psychological adaptation of children with various chronic illnesses in their
transactional stress and coping model. These authors found that mothers of
children with sickle cell disease who reported high levels of anxiety and
depression also reported behavior problems in their children
(Thompson et al., 1993b). This
relationship between maternal adjustment and child adjustment has also been
reported in the developmental psychopathology literature with healthy
children, where maternal maladjustment has been shown to place children at
significant risk for emotional and behavioral problems
(Downey & Coyne, 1990;
Renouf & Kovacs, 1994).
The impact of caregivers' adjustment on children's psychological functioning
in children with HIV disease has not been empirically investigated.
The purpose of this study was to assess the psychological impact of
pediatric HIV disease on caregivers in a sample demographically representative
of the pediatric epidemic. A control group matched with the HIV-infected
sample on demographic characteristics was included so that the role of
pediatric HIV disease independent of other risk factors (e.g., socioeconomic
status [SES]) could be assessed. This study incorporated a theory-driven,
conceptual model adapted from Thompson and colleagues to guide the hypotheses
(see Figure 1; Thompson et al.,
1993a,
1993b). To date, such
conceptually guided assessments have not been applied to research on the
psychological functioning of children and families affected by HIV.
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We hypothesized that caregivers of children infected with HIV would evidence higher levels of psychological distress and poorer adjustment than caregivers of children who are not infected with HIV but who are living in similar environments. In addition, we predicted that caregivers of children with HIV would report higher levels of stress, more maladaptive coping strategies, and fewer family resources and support than caregivers of healthy children. As outlined in the model in Figure 1, we also hypothesized that caregivers' psychosocial processes would account for significant increments in the variance in caregivers' psychological adjustment. Specifically, children's HIV status and caregiver reports of high levels of stress, maladaptive coping styles, and limited family resources and support were expected to be significant predictors of caregivers' poor psychological adjustment. Last, we predicted that caregivers' psychological adjustment would be a significant predictor of children's psychological functioning, beyond that accounted for by stress, coping, and other family factors. That is, caregivers who report high levels of psychological distress would also report high levels of emotional and behavioral problems in their children, independent of caregivers' psychosocial factors. A hierarchical regression model was developed to assess these hypothesized relations between psychosocial processes and caregiver adjustment in an integrative fashion.
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Method |
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Participants and Setting
Participants. Caregivers of children infected with HIV (HIV-infected group, n = 36) and caregivers of healthy children (control group, n = 32) served as participants. The children ranged in age from 6 to 16 (M = 9.6 years). The groups were matched on child characteristics including age, gender, ethnicity, and the family's SES. Approximately 90% of the total sample were African American and 10% were Caucasian. All families were classified in the low range of SES, using Hollingshead's (1957
)
criteria, and lived in inner-city neighborhoods. Participants were recruited and enrolled in the study in the Pediatric Infectious Disease Clinic and the Pediatric Outpatient Clinic of the Grady Health System in Atlanta, GA. Caregivers of children with HIV disease were attending routine follow-up clinic visits with their child. Caregivers of children in the control group were attending pediatric clinic visits for acute illness treatment or for physical examinations of their child. All of the caregivers who participated in this study were women, as this was who accompanied the child to their clinic visit. Caregivers were excluded from the study if they were unable to complete the assessment battery even with assistance from the experimenter (e.g., non-English-speaking, caregivers unable to comprehend the assessments). In addition, caregivers in the control group were not included in the study if they reported that they or their child had previously been diagnosed with a chronic illness or were HIV-infected.
HIV-Infected Group. Ninety-seven percent of the children diagnosed with HIV were perinatally infected. Approximately 33% of these children had an AIDS diagnosis at the time of enrollment. Thirtythree percent of the HIV-infected children lived with their biological mothers, who were also HIV-infected, and 50% of this group lived with their grandmother or another biological relative (see Table I). The remainder of the group lived with foster or adoptive parents. Thirty-three percent of the HIV-infected children's mothers had died from AIDS-related illnesses. Only 3 (8%) of the HIV-infected children were living with a sibling or foster sibling who was also HIV-infected. Thirty-five percent of the caregivers of HIV-infected children were married and the others were either single, divorced, or widowed. With regard to education level, 67% of caregivers had completed high school or less education, and the majority of caregivers in this sample were unemployed or working in unskilled jobs.
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Control Group. In contrast, most (78%) of the healthy children lived with their biological mothers and 13% of the sample lived with their grandmother or another biological relative. The remainder of the group lived with foster parents. Twentyone percent of caregivers of healthy children were married and the others were either single, divorced, or widowed. Approximately 60% of the caregivers of healthy children had completed high school or less education, and most were either unemployed or working in unskilled jobs. None of the caregivers of healthy children reported being HIV positive.
Measures
Demographic Parameters. Caregivers provided demographic
information on themselves and their children. This questionnaire also
requested occupation/job description and educational level in order to
calculate an estimate of SES using the Hollingshead Two-Factor Index of Social
Position (Hollingshead,
1957).
Stress. Daily hassles were assessed with the 58-item Hassles Scale
(Kanner, Coyne, Schafer, & Lazarus,
1981), which yields a sum score that reflects both frequency and
severity of perceived stress and hassles. This measure has documented
reliability and validity (Kanner et al.,
1981).
Coping Strategies. The Coping Strategies Inventory (CSI;
Tobin, Holroyd, & Reynolds,
1989) was used to assess coping thoughts and behaviors in response
to a specific stressor. After describing a stressful medical situation,
respondents answer 36 questions on a 5-point Likert scale. Factor analytic
studies have delineated broad band methods of coping, such as emotion-focused
(palliative) and problem-focused (adaptive;
Lazarus & Folkman, 1984).
Alpha coefficients on the subscales range from.71 to.94, with test-retest
coefficients ranging from.67 to.83. A palliative coping ratio score was
derived to reflect the relative use of palliative to adaptive coping
(Thompson et al., 1993a).
Family Factors. The Family Resource Scale (FRS;
Dunst & Leet, 1987) was
administered to assess perceived resources in the home. This scale consists of
31 items that measure the adequacy of resources such as food, shelter, money,
transportation, health care, time to be with family, and child care.
Coefficient alpha was reported as.92 for the items in this scale, split-half
reliability was.95, and adequate criterion validity has been demonstrated
(Dunst, Trivette, & Deal,
1988).
In addition, the Family Support Scale (FSS;
Dunst, Jenkins & Trivette,
1984) was completed by caregivers to assess perceived sources of
emotional, social, and physical support to families. This scale includes 18
items rated on a 5-point Likert scale. Previous research has reported
coefficient alpha among the items to be.77, split-half reliability to be.75,
and test-retest reliability as.75 at 1 month
(Dunst et al., 1988).
Psychological Adjustment. Caregivers' psychological adjustment was
assessed by the Brief Symptom Inventory (BSI;
Derogatis & Melsaratos,
1983). This scale is a 57-item abbreviated version of the Symptom
Checklist 90-Revised and yields severity scores for nine dimensions of
psychiatric symptoms (depression, anxiety, psychoticism, somatization,
obsessive-compulsive, interpersonal sensitivity, hostility, phobic anxiety,
and paranoid ideation) and three global indices of distress. The Global
Severity Index (GSI) combines information on number of symptoms and intensity
of perceived distress and was used for this study as an overall index of
psychological distress. Derogatis and Melsaratos
(1983) have reported alpha
coefficients for the symptom dimensions from.71 to.85 and test-retest
reliability coefficients for the GSI =.90.
Caregivers also completed the Child Behavior Checklist (CBCL;
Achenbach & Edelbrock,
1991) to provide an index of child psychological adjustment. The
CBCL is a 113-item scale used to assess children's social competence, as well
as internalizing and externalizing behavioral problems. The CBCL has been well
standardized, and it has adequate reliability and validity
(Achenbach & Edelbrock,
1991). Further, it has been used frequently to assess behavioral
disturbance in children with chronic illnesses
(Wallander & Thompson,
1995).
Procedure
This study was approved by the Institutional Review Board (IRB) of Emory
University before its initiation. Participants were contacted by telephone or
were approached in the clinic waiting room prior to their scheduled clinic
appointments and were invited to participate in the study. The purpose and
requirements of the study were explained and participation was requested for
those caregivers that met the eligibility criteria. Written informed consent
from the caregiver was obtained. Participants were then taken into clinic exam
rooms or staff offices and interviewed for approximately 60-90 minutes. All
questionnaires were verbally administered to all individuals in order to
control for differences in reading ability. Caregivers were paid a small
incentive ($10.00) upon completion of the assessment battery. Separate
research assistants conducted the assessments at the two different clinics, as
the clinic site identified the child's group status. The research assistants
were student volunteers who were not affiliated with either clinic in any
capacity. Approximately 10% of caregivers in the control group who were
invited to participate refused due to caregiver time limitations, and they
also declined to schedule another appointment to participate in the study. One
caregiver from the HIV group declined to participate, as she was concerned
about disclosure issues and her family learning their HIV status by
participating in the study.
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Results |
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Overview of Data Analyses
In the following paragraphs, we describe the psychological adjustment of caregivers of HIV-infected and non-infected children and test the hypotheses of significant differences in psychological adjustment, stress, coping, and support between caregivers of HIV-infected children and caregivers of healthy children. Psychosocial factors associated with the psychological adjustment of caregivers in this sample are explored through correlational analyses, and hierarchical regression equations are presented that test the theoretical model in Figure 1. Specifically, we assess predictors of caregiver psychological adjustment, guided by the hypotheses outlined in the model. In addition, we examine caregiver psychosocial factors and caregiver psychological distress as predictors of children's psychological functioning.
Psychological Adjustment of Caregivers. Means and standard
deviations of all measures are presented in
Table II for both groups.
Thirty-four percent of caregivers of children infected with HIV and 41% of
control group caregivers reported psychological distress levels in the
borderline or clinical ranges (T score 
90th percentile). A
series of one-way analyses of varaince (ANOVAs) was run to test our hypotheses
of group differences between caregivers of HIV-infected children and
caregivers of healthy children on measures of psychological adjustment,
stress, coping, and support. Contrary to our hypothesis, caregivers of
children with HIV did not significantly differ from caregivers of non-infected
children on reports of their level of psychological distress. In addition, no
other significant group differences were found between caregivers on their
report of family resources, family support, or coping style. However, contrary
to our hypothesis, caregivers of children with HIV reported significantly
fewer daily hassles than caregivers of healthy children, F(1, 66) =
4.73, p <.05. Power estimates yielded effect sizes ranging from.60
to.80, suggesting that the lack of group differences on measures of
psychological adjustment, stress, coping, and support were not due to
insufficient power.
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Psychosocial Correlates of Caregiver Adjustment. We calculated a series of Pearson correlation coefficients to provide an initial assessment of the hypothesized relations between demographic parameters, child's HIV status, caregiver psychosocial processes, and psychological adjustment (see Table III). Child's gender and family SES were not found to significantly relate to any variables of interest; therefore, they were not included in the final analyses. Children's HIV status was not significantly related to caregiver psychological adjustment. However, poor caregiver adjustment was significantly related to caregiver report of more daily hassles (r =.62, p <.01), use of more palliative coping strategies (r =.46, p <.01), and fewer family resources (r = -.35, p <.01).
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Multiple Regression Analyses. We conducted a series of hierarchical multiple regression analyses to test the proposed model in Figure 1. The predictor variables were added in a theoretically determined sequence. Specifically, caregiver psychosocial variables were entered in the following order to predict caregiver psychological adjustment: child's age, child's HIV status, caregiver's daily hassles, coping style, and family factors. Similarly, these same variables were entered in the model, followed by caregiver psychological adjustment, to predict caregiver-reported child psychological adjustment. Due to the limited sample size in this study, mediator and moderator relationships could not be tested.
Caregiver Adjustment
The overall R2 when all variables hypothesized as
significantly contributing to caregivers' psychological adjustment were
considered was significant, F(6, 61) = 8.61, p <.001,
accounting for 46% of the variance (see
Table IV). The hierarchical
analysis allowed for testing of the specified hypotheses for each predictor
variable. Contrary to our hypothesis, children's HIV status was not a
significant predictor of caregiver psychological adjustment. However, as
predicted, daily hassles accounted for a significant increment in the variance
(ß =.60, p <.001), indicating that caregivers who reported
more daily hassles also tended to report more psychological distress.
Caregiver coping style also accounted for a significant increment in the
variance (ß =.24, p <.05), suggesting that caregivers who
reported using more palliative coping strategies also reported more
psychological distress than caregivers who reported using more adaptive coping
strategies. Although family resources were significantly correlated with
caregivers' psychological adjustment (r = -.35, p <.01),
they were not a significant predictor when other variables were controlled for
in the equation, nor was family support.
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Child Adjustment: CBCL Internalizing Behavior Problems
Caregiver psychosocial processes and caregiver adjustment were entered next
in a regression equation predicting caregiver-reported child internalizing
behavior problems (see Table
V). The overall R2 was significant when all
variables hypothesized as significantly contributing to children's
internalizing behavior problems were considered, F(7, 60) = 6.99,
p <.001, accounting for 45% of the variance. A significant
increment in the variance was accounted for by children's HIV status (ß
=.30, p <.05), with caregivers of healthy children reporting more
internalizing behavior problems in their children than caregivers of
HIV-infected children. Daily hassles accounted for a significant increment in
the variance (ß =.48, p <.001), indicating that caregivers
who reported more daily hassles also tended to report more internalizing
behavior problems in their children. As hypothesized, caregiver psychological
adjustment accounted for a significant increment in the variance (ß =.49,
p <.001), beyond that accounted for by other psychosocial factors.
This finding suggests that caregivers who reported more psychological distress
rated their children as exhibiting more internalizing behavior problems than
caregivers who reported less psychological distress. Although caregiver coping
style was significantly correlated with children's internalizing behavior
problems (r =.31, p <.01), it was not a significant
predictor when other variables were controlled for in the equation.
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Child Adjustment: CBCL Externalizing Behavior Problems
Caregiver psychosocial processes and caregiver adjustment were then entered
in a regression equation predicting caregiver-reported child externalizing
behavior problems (see Table
VI). The overall R2 when all variables
hypothesized as significantly contributing to children's externalizing
behavior problems were considered was significant, F(7, 60) = 4.35,
p <.001, accounting for 34% of the variance. Caregivers' report of
daily hassles accounted for a significant increment in the variance in
children's externalizing behavior problems (ß =.45, p <.001),
suggesting that caregivers who reported more daily hassles also tended to
report more externalizing behavior problems in their children. As
hypothesized, caregiver psychological adjustment also accounted for a
significant increment in the variance (ß =.35, p <.05),
beyond that accounted for by other psychosocial factors. Caregivers who
reported more psychological distress rated their children as exhibiting more
externalizing behavior problems than caregivers who reported less
psychological distress. Although caregiver coping style was significantly
correlated with children's externalizing behavior problems (r =.31,
p <.01), it was not a significant predictor when other variables
were controlled for in the equation.
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Discussion |
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Caregivers of chronically ill children are thought to be at risk for psychological adjustment problems due to the magnitude of psychosocial stresses they face. This study assessed predictors of psychological adjustment in caregivers of HIV-infected children and a healthy control group. Contrary to our expectations, caregivers of children with HIV did not report significantly higher levels of psychological distress than caregivers of healthy children. However, a large number of caregivers in both groups reported clinically significant levels of psychological distress. Specifically, more than a third of caregivers in both groups reported psychological distress levels above the 90th percentile. This finding is consistent with previous studies that have also reported higher than average levels of psychological distress in caregivers of children with HIV (Hughes & Caliandro, 1996
;
Mellins & Ehrhardt, 1994).
However, given that high rates of distress were evident in caregivers of both
HIV-infected and healthy children, this finding likely reflects the multitude
of environmental stressors associated with poverty and single-parenthood
facing the majority of families in this study.
Caregivers of HIV-infected children and healthy children did not
significantly differ on a measure of their psychological adjustment. This
finding is consistent with previous studies that have shown that the child's
illness status is not always significantly related to maternal adjustment and
that many families cope remarkably well with the stress of caring for a sick
child (Bettoli-Vaughan, Brown, Brown, &
Baldwin, 1998; Wallander,
Pitt, & Mellins, 1990). However, we did find that a greater
number of daily hassles, use of more palliative coping strategies, and fewer
family resources were associated with poor psychological adjustment in the
caregivers in this study, independent of their child's health status. Similar
findings were evident in caregivers of children with sickle cell disease,
where greater reported stress and endorsing a palliative coping style were
predictive of greater psychological distress
(Thompson et al., 1993a).
Previous studies of caregivers of children with HIV have also found that using
emotion-focused coping strategies and having access to fewer family resources
were associated with poor psychological adjustment in caregivers
(Betolli-Vaughan et al., 1998; Mellins
& Ehrhardt, 1994).
Given the frequent clinic visits, complicated medication regimens, frequent bouts of illness, and stigma associated with HIV, we expected that caregivers of children with HIV would report significantly higher levels of stress and daily hassles and less support than caregivers of healthy children. However, no significant differences between groups were found on these factors, with the exception of daily hassles. Contrary to our expectations, caregivers of healthy children reported significantly more daily stress than caregivers of HIV-infected children. Caregivers of children with HIV may receive more help and support from extended family members, particularly since the majority of children with HIV are living with grandmothers or other family members. It is common in our clinic, for example, for family members (e.g., grandmothers and aunts) to share responsibility or to assist each other in caring for an HIV-infected child. It is also likely that family members were chosen to be the caregivers of HIV-infected children due to their ability to provide competent parenting and support. In addition, psychosocial services such as case management, support groups, and individual and family therapy are available to all HIV-infected children and caregivers attending the pediatric infectious disease clinic. In contrast, these social support services are not always available to children in primary care pediatric clinics unless an obvious crisis is present. Further, our data show that the majority of the healthy children live with their biological mothers who are single parents and may not get the same level of assistance and support from their families as caregivers of children with HIV.
As predicted, caregivers' psychological adjustment was a significant
predictor of children's emotional and behavioral functioning, independent of
caregiver stress level, coping style, and family support. Our findings suggest
that caregivers who reported high levels of psychological distress also
reported high levels of internalizing and externalizing behavior problems in
their children, regardless of the child's illness status. In fact, caregivers
of healthy children in this study reported more internalizing behavior
problems in their children than caregivers of HIV-infected children. This
relationship between maternal psychological functioning and child functioning
has been documented in children with other chronic illnesses such as sickle
cell disease and cystic fibrosis (Thompson
et al., 1993a; Thompson,
Gustafson, Hamlett, & Spock, 1992). Similar findings have also
been reported in the developmental psychopathology literature where it has
been shown that depressed mothers report more internalizing behavior problems
in their children than nondepressed mothers
(Chilcoat & Breslau, 1997).
In addition, depressed mothers tend to overreport their child's symptoms when
compared to both child self-report and independent teacher ratings
(Chilcoat & Breslau, 1997;
Renouf & Kovacs, 1994).
Together with these findings, these studies clearly indicate that maternal
adjustment is a key factor in children's adaptation to their environment,
regardless of illness status.
The transactional stress and coping model has not previously been applied to families with HIV disease; however, the findings from this study suggest that this model is useful for describing factors related to the psychological adjustment of caregivers of HIV-infected children. Given the multitude of stressors family members living with HIV must face daily, many of whom are single mothers who are also sick, the factors identified in this model seem particularly relevant. In addition, this model seems to have even broader utility, as stress and coping style were also shown to be important predictors of psychological distress in caregivers of HIV-infected and healthy children. These findings identify potential areas for intervention for clinicians working with families with HIV or families struggling to cope with poverty and limited resources. Specifically, teaching stress management techniques, more problem-focused coping strategies, and ways to increase access to resources and family support would likely benefit many caregivers.
There are several limitations to this study that warrant noting. First,
although small sample sizes are characteristic of many studies of children
with HIV disease and other chronic illnesses, the small sample size of this
study significantly limited our ability to fully test the model proposed by
Thompson and colleagues (Thompson et al.,
1993a,
1993b). In particular, it did
not allow for testing of mediator or moderator relationships among the
factors, which may have altered our interpretation of the data. Second, we did
not obtain significant differences in psychological adjustment between
caregivers of HIV-infected and healthy children. The high level of
environmental risk factors for all families in this study (e.g., poverty,
single parenthood, living in inner-city neighborhoods with high levels of
crime and violence, substance abuse) may have outweighed or overshadowed any
deleterious effects of HIV disease
(Bettoli-Vaughan et al., 1998).
Future research is needed to gain a better understanding of the relationship
between environmental risk factors and illness-related risk factors affecting
caregiver adjustment. In addition, given the strong association between HIV
disease and substance abuse, future researchers may want to include this
factor in future studies evaluating the stress and coping model. Finding
better methods for assessing support, which may buffer some of the negative
impact of living with HIV disease, also seems important.
Although we did not intentionally exclude fathers or male caregivers from our sample, we enrolled only female caregivers, as that is who presented to the clinics with their children for their medical appointments. Consequently, we do not have data on fathers or male caregivers in this sample. This lack of enrollment of fathers or father figures is common in pediatric studies. Future researchers should seek to investigate the role of male caregivers and fathers in caring for children with HIV so that their perspective can be gained. In addition, we relied on caregivers' ratings of children's psychological adjustment. This lack of children's self-report data and lack of multiple informants are weaknesses of this study. Last, although the measures for this study were chosen because of their prior use with African American families, we cannot be certain of the cultural sensitivity of these measures and their ability to truly reflect the experiences and problems of low-income African American children and families.
The results of this study reveal the significant burdens with which caregivers of children with HIV must cope. The impact of poverty and social stressors on both families with HIV and families with healthy children is also evident in the findings from this study. In addition, regardless of the child's illness status, stress, coping style, and access to resources are robust predictors of psychological adjustment in impoverished women coping with the stresses of caregiving. Together, these results highlight the importance of having mental health services, case management, and social work services available for families coping with a chronic or terminal illness in their child, as well as in primary care settings for families at risk for emotional problems.
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Acknowledgments |
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Portions of this data were previously presented at the NIMH Conference on the Role of Families in Preventing and Adapting to HIV/AIDS, Baltimore, MD, 1997, and at the 6th Florida Conference on Child Health Psychology in Gainesville, FL, 1997. This study was supported by a grant from the Emory Medical Care Foundation to Pamela Bachanas, PhD, Steven Nesheim, MD, J. Stephen McDaniel, MD, and Joy Smith, MD. We thank Tonya Lauf, Christopher Hummel, Candice Baugh, David Reed, and Karyn Davis for their assistance with data collection.
Received July 14, 2000; revision received November 8, 2000; accepted February 1, 2001
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