Journal of Pediatric Psychology, Vol. 26, No. 6, 2001, pp. 363-366
© 2001 Society of Pediatric Psychology
Special Section: Children with HIV/AIDS and Their Families |
Commentary: HIV Infection and Family Processes: Toward the Next Generation of Research
University of Kansas
All correspondence should be sent to Ric Steele, Clinical Child Psychology Program, 2006 Dole Human Development Center, 1000 Sunnyside Ave., University of Kansas, Lawrence, Kansas, 66045-7555. E-mail: rsteele{at}ukans.edu .
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Over the past decade, advances in the medical treatment of children with HIV infection have resulted in greater control over symptoms associated with the virus, greater latency between infection and onset of AIDS-defining conditions, and increased length of life (Rogers, Lindgram, Simmonds, Gwinn, & Bertolli, 1998
). Unfortunately, identification and amelioration of
the psychosocial and psychoeducational correlates of HIV infection have not
progressed as quickly, or with the same degree of impact on children's lives.
Although emotional, behavioral, and cognitive problems have been identified
among children who are HIV-infected (see
Armistead, Forehand, Steele, &
Kotchick, 1998), findings across investigations have not been
consistent, and pathways by which HIV affects children's functioning are not
yet well understood (see Brown, Lourie,
& Pao, 2000). In this context, the four articles in this issue
examining children with HIV and their families (Bachanas, Kullgren, Schwartz,
Lanier, et al.; Bachanas, Kullgren, Schwartz, McDaniel, et al.; Coscia et al.;
Wiener, Vasquez, & Battles) represent significant steps toward
understanding the nature of the relationships between HIV infection and
emotional, behavioral, and cognitive sequelae. The most obvious common theme across the studies is the examination of intrafamilial factors that may affect emotional and cognitive functioning of children with HIV. Yet, to a greater extent than is often seen in the pediatric AIDS literature, the authors have moved beyond identifying an association between pediatric HIV infection and psychosocial adjustment (or psychoeducational performance) and have attempted to identify mechanisms that may explain these associations (e.g., predominant coping strategies, caregiver attitudes and practices, caregiver emotional distress). In an attempt to encourage further research on these mechanisms, this commentary will focus on factors identified by the four investigations that may hold promise for future intervention research.
The findings of Coscia et al. are particularly noteworthy in that they
identify both a mediating and a moderating mechanism in the relationship
between HIV infection and cognitive functioning in children. As highlighted by
the authors, the literature has identified a variety of central nervous system
(CNS) outcomes associated with pediatric HIV infection. These outcomes include
both changes in the structural integrity of the infected CNS
(Campbell, 1997), as well as
changes in neurochemical processes within the CNS of infected individuals
(Kraiselburd, 1995). Yet,
despite these biological differences, reports in the literature on the
cognitive functioning of children with HIV/AIDS are varied (e.g.,
Bisiacchi, Suppiej, & Laverda,
2000; Fishkin et al.,
2000; Loveland et al.,
2000). Perhaps contributing to the explanation of the varied
findings, Coscia et al. have identified home environment as a mediator between
HIV infection and neurocognitive outcomes. These results suggest a need for
prevention efforts (i.e., prior to significant disease progression), as well
as specialized intervention for families once the child's illness has
progressed. A number of issues resulting from this finding will require
further investigation, including whether, how, and when therapeutically driven
changes in family environment will affect the cognitive development of the
child.
Consistent with numerous studies in the adult and pediatric psychology
literature (e.g., Compas, Worsham, Ey,
& Howell, 1996; Moos &
Shaefer, 1993; Steele et al.,
1999) Bachanas et al. identified reliance on palliative coping
strategies as predictors of emotional distress among both children and their
caregivers. Some authors (e.g., Roth &
Cohen, 1986) have suggested that palliative coping strategies are
associated with increased distress because of the notion that they provide
only temporary relief from the source of discomfort or distress.
Unfortunately, the waters here are still murky, as many measures of palliative
(i.e., emotion-focused) coping are "contaminated" by items that in
and of themselves reflect emotional distress (e.g., "Cry or feel
sad"; Schoolager's Coping Strategies Inventory;
Ryan-Wenger, 1990).
Inconsistent with the results presented in this issue, Stanton et al.
(2000) examined emotional
approach strategies among women with breast cancer and found a positive
association between emotional approach and psychological adjustment to illness
and to positive clinical outcomes. According to Stanton et al., emotional
approach strategies are uncontaminated by emotional distress (e.g., "I
take time to express my emotions"). In light of the various functions of
coping behaviors, it may be necessary to examine the specific roles of coping
strategies within the pediatric AIDS/HIV population. For example, palliative
strategies may be used in an attempt to ameliorate distressing thoughts and
feelings, but may also have the effect of decreasing adherence to medication.
Further clarification of the roles of specific coping mechanisms in children's
adjustment to HIV infection is warranted.
Related to coping strategies, Bachanas and colleagues found that children
who were not told of their illness reported more distress and had caregivers
with higher self-reported distress. This finding is consistent with results
among other disease types (e.g., cancer) wherein children who were not
informed of their illness evidenced increased distress
(Slavin, O'Malley, Koocher, & Foster,
1982; Waechter,
1971). To our knowledge, Bachanas and colleagues are the first to
demonstrate this effect among children with HIV. Because of the unique
characteristics of HIV infection (e.g., social stigma), a number of questions
remain outstanding: Is there a causal association between disclosure and self-
or caregiver-reported distress? For whom (age, coping style, cognitive level)
is disclosure appropriate? By what process should children be informed of
their HIV status? What are the requisite skills for optimal assimilation of
this information? The growing number of perinatally infected children who are
successfully reaching their teenage years underscores the need for empirical
answers to the above questions.
A curious finding across both of the Bachanas studies was that children with HIV and their caregivers evidenced lower mean T-scores on measures of distress than children without HIV and their caregivers. In their discussion, Bachanas et al. suggested two hypotheses regarding the cause of this nonintuitive finding. First, it is possible that families with HIV benefit from mental health care services available to them, whereas uninfected families have more limited access to such services. Whereas it is true that patients of tertiary care centers often have access to specialized mental health services, there are few empirical data to indicate the extent to which HIV-infected patients use these services. Further, the differential use and effectiveness of traditional support systems (e.g., family, spiritual leaders) versus formal mental health services in this population have not been sufficiently examined empirically. Mental health care availability and utilization among the pediatric AIDS community appears to be an important area for further investigation.
Alternatively, Bachanas and colleagues proposed that children with HIV and
their families might evidence a coping style (adaptive style) that minimizes
the experience and reporting of distress or unpleasant emotions. This
speculation is not inconsistent with results from some studies of children
with cancer, in which patients reported less distress (i.e., anxiety,
depression) than that expressed by children without cancer (e.g.,
Phipps & Srivastava,
1997). Furthermore, recent data
(Phipps, Steele, & Elliott,
submitted) suggest that African American children may employ a
repressive adaptational style with greater frequency than other racial or
ethnic groups. This finding was particularly strong among African American
children with serious illnesses (e.g., cancer, juvenile rheumatoid arthritis).
One concern is that children who may need additional support during difficult
experiences will not be identified as such because of an adaptive style that
conceals emotional distress. However, repressive adaptation—and, more
important, the utility of that adaptive style—has not been examined
among children with HIV or their families.
Contrary to the findings of Bachanas and colleagues, Wiener et al. reported
increased distress among fathers (or male caregivers) of children who are
HIV-infected, relative to the Brief Symptom Index (BSI;
Derogatis & Melisaratos,
1983) normative sample. In fact, a conversion of the mean raw
score of the Global Severity Index of the BSI presented by Wiener et al. (.48)
yields a T-score of about 61, which surpasses that reported by Bachanas and
colleagues. It should be noted that a number of significant differences exist
between the samples of Weiner et al. and Bachanas and colleagues, including
racial composition and socioeconomic status (SES) levels of the groups, as
well as frequencies of routes of transmission of the virus (e.g., vertical
transmission vs. transfusion-related transmission). Thus, comparison of
results across studies may not be meaningful. Nevertheless, the finding of
differential reporting of emotional distress between male and female
caregivers warrants further investigation. The extent to which the discrepancy
reflects cultural differences (i.e., rather than gender differences) in the
experience of parenting a child with HIV also seems worthy of attention.
Bachanas and colleagues hypothesized that the lack of differences between control group caregivers and caregivers of HIV-infected children on measures of distress might result from the latter's greater access to mental health care. In light of this possibility, Wiener and colleagues' report that almost a third of their sample attended support group meetings, and that the majority of the sample reported seeing a need for mental health services, is intriguing. Again, more information regarding the utilization of mental health care services by families affected by HIV is needed. Whether utilization patterns covary with demographic variables within the pediatric HIV community has not been empirically addressed.
We began this commentary noting the similarities among the studies: they attempt to move the literature beyond noting differences between children who are healthy and those with HIV, and toward identifying mechanisms that explain the nature of the observed relationships. Although the studies in this issue represent progress, the literature remains far from developing empirically supported recommendations to ameliorate the psychosocial or psychoeducational comorbidities of pediatric HIV infection. As these studies have suggested, family environmental conditions will likely be a key focus of any such interventions. Specifically, factors pertaining to family coping mechanisms, communication about illness, and educational supports and resources available in the home may be particularly amenable to further research.
Received January 22, 2001; accepted January 25, 2001
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