Journal of Pediatric Psychology, Vol. 27, No. 2, 2002, pp. 191-201
© 2002 Society of Pediatric Psychology
Society of Pediatric Psychology Presidential Address: Toward a Social Ecology of Pediatric Psychology
Medical University of South Carolina
All correspondence should be sent to Ronald T. Brown, Department of Pediatrics, Medical University of South Carolina, 19 Hagood Avenue, P.O. Box 250822, Charleston, South Carolina 29425. E-mail: BrownRon{at}MUSC.edu .
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Although pediatric psychologists have contributed much to the clinical and research literature regarding the effects of chronic illness on children's cognitive and social development, unfortunately we have been less productive in examining the reciprocal influence of children's illness on other systems including peer relationships, schools, and health care providers. There are distinct reciprocal interactions between children with chronic illness and systems surrounding them. In this article, I argue that cultural systems, family systems, peers, schools, and health care providers influence the adjustment and adaptation of children with chronic illness and that children with chronic disease also have reciprocal influences on these systems. For the purpose of this article, I will draw primarily from my own program of research, as well as the programs of research from close colleagues. The literature reviewed here does not represent an exhaustive review of social ecology; rather, the purpose of the article is to provide exemplars to illustrate the notion regarding reciprocal influences of systems on pediatric populations and pediatric populations on systems. I argue for a greater systems approach in pediatric psychology. We should consider in our future research agenda the reciprocal interactions of children's illness on systems and systems' issues on children's adjustment and adaptation to illness. The scope of the article is limited to family systems, broader social systems including peers and school, as well as health care providers. I hope that this article will contribute to pediatric psychologists' broader thinking of systems in both their programs of research and the clinical issues we negotiate daily.
Much of my thinking regarding social ecology has been derived from a
program of research in pediatric psychopharmacology (for review, see
Brown, Dreelin, & Dingle,
1997
; Brown & Sawyer,
1998). Under double-blind conditions, the effects of stimulant
medication on children's behavior and learning were that their capacity to
deploy attention and their on-task behavior were much improved. Also, teachers
who were unaware of the children's diagnosis or whether the children were
receiving active medication or placebo reacted in distinct ways (Whalen,
Henker, & Dotemoto, 1980,
1981). They reacted with more
intensity and control toward boys who were receiving placebos than toward the
boys who were medicated. In the midst of engaging in everyday classroom
activities, teachers were quite responsive to the stimulant medication status
of the children. Thus, a treatment that produces significant behavioral
changes in children also produces concomitant changes in those who interact
with children.
But pediatric psychologists manage not just one child on medication but a network of other people as well. Based on this research examining the effect of stimulant medication on parents, teachers, and peers with whom medicated children interact, we can now conclude definitively that stimulant medication exerts a significant effect not only on the child but also on ecological factors associated with the child's daily life. For this reason, a corollary program of research is needed in pediatric psychology in which we examine the effects of disease and empirically validated treatments in adapting to the disease and the effect of these variables on other systems in the child's life.
Pediatric psychologists should construct a framework to include the
reciprocal influences of systems on chronic illness and chronic illness on
systems for the organization of empirical and theoretical data on pediatric
illness. That framework should emphasize a contextual approach to all our
research, similar to programs of research examining the economic impact of
medical therapies (e.g., Bradford, Chen,
& Krumholtz, 1999;
Krumholz et al., 2000;
Swenson, Randall, Henggler, & Ward, 2000). This should include systematic
investigation of the effects of illness and associated medical and
psychosocial treatments on families, peers, teachers, and health care
providers. In addition, the importance of reciprocal examination of these
systems on children and adolescents with chronic illness should be
underscored. These are the paths that will be most profitable for our
clients.
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Social ecology includes the study of the relationship between the developing individual and the setting and context in which the person actively functions (Bronfenbrenner, 1979
). Kazak and colleagues
(Kazak, 1989;
Kazak, Segal-Andrews, & Johnson,
1995; Kazak & Simms,
1996) provide a framework for understanding how childhood illness
and the individuals and systems internal and external to the family affect one
another, in which the child is designated as the center of a series of
concentric spheres. Reciprocity is the hallmark of this contextual theory.
Children's illnesses, their strategies for coping, and their temperament
affect the systems around them; in turn, the systems also affect children's
adjustment and adaptation to their illness.
Contexts and Systems
A review of the contexts and systems that need greater systematic
investigation is appropriate. Clearly, there has been some progress in
understanding the reciprocal influence of family, peers, and schools. However,
a more systematic study of health care providers and their influence on
chronically ill children, and the reciprocal influences of children with
chronic illness on health care providers, peer relationships, and the school
environment, is the next best step for pediatric psychology.
The first level of influence is the "microsystem," in which the
child's individual development, the disease, and the family experience
reciprocal relationships (Bronfenbrenner,
1979). Included in the microsystem are the disease, the ill child,
siblings, caregivers, the marital relationship, and the family. As Kazak
(Kazak et al.,
1995,Kazak et al.,
1995; Kazak & Simms,
1996) has argued, families have particular needs that highlight
the importance of family-school relationships and associations with the health
care team that are frequently altered in accordance with the demands of
treatment. The availability of social networks and utilitarian resources has
an effect on children with chronic illness. As Kazak and colleagues note,
whether friends and extended family can support caregiving demands affects the
chronically ill child and the family's adjustment and adaptation to the
illness.
Cultural Influences. The macrosystem considers the effect of
cultural and belief patterns on each of the other systems
(Kazak et al.,
1995,Kazak et al.,
1995; Kazak & Simms,
1996). Professional guidelines suggest that cultural variables be
included in our research programs, but investigators frequently neglect this.
For example, until recently, the vast combination of psychopharmacology
research has failed to examine the idiosyncratic response of cultural and
ethnic groups to psychotropic agents. Strickland and associates
(Strickland, Lin, Fu, Anderson, &
Zheng, 1995) found that African Americans experienced greater
toxicities and other adverse effects from treatment with lithium carbonate for
the management of bipolar disorder than did Europeans and that Asian Americans
metabolize tricyclic anti-depressants more slowly than other ethnic groups.
Our own research (Brown & Sexson,
1988) demonstrated that hypertension is a particularly frequent
adverse side effect of stimulant medication used for African American
youngsters with ADHD. We found no other investigation examining differential
medication response in a pediatric population as a function of race or
ethnicity (for review, see Brown &
Sawyer, 1998).
Family Systems. The effect of chronic illness on the family system
is pervasive, and the family has a profound influence on the child or
adolescent with a chronic illness. A number of theoretical approaches seek to
understand children with chronic disease and their families. Risk, resources,
and resilience factors, by enhancing coping skills, mediate the association
between the demands of chronic illness and adjustment
(Kazak, 1989). Family
functioning has been conceptualized as an adjustment outcome. Other
researchers, particularly Thompson and associates
(Thompson, Gil, Burbach, Keith, &
Kinney, 1993; Thompson &
Gustafson, 1996; Thompson,
Gustafson, George, & Spock, 1994) include discussions of the
cognitive processes involved in adaptation to illness.
Another model by Rolland
(1990) conceptualizes the
family systems-illness model by suggesting that chronic illness results in a
threatened or perceived loss for the individual who is ill, as well as for the
family members. Losses are experienced through role changes among family
members and loss of functioning by those who must care for the child with a
chronic illness (Barakat & Kazak,
1999). Recent work with Carolyn Ievers and Dennis Drotar
(Ievers-Landis et al., 1999;
Ievers-Landis, Brown, Drotar, Bunke, Lambert, & Walker, in press) has
demonstrated that the role of caregivers for a chronically ill child, in
addition to other family roles in everyday life, is both demanding and
exhausting. These roles include adherence to disease treatment demands,
assisting children in coping with pain, helping children to cope with feelings
about a chronic illness, aiding with academic problems related to a child's
chronic illness, assisting children in sustaining adequate nutrition, as well
as general parenting practices (e.g., protectiveness discipline).
An interesting exemplar of the influence of family functioning on children
with chronic disease is the investigation by Susannah Allison, who received
the 2000 Society of Pediatric Psychology student research award. Allison
(2001) examined the association
between parent and child psychosocial variables and health outcomes in 124
children who survived cancer. The data were collected in the children's
hematology and oncology clinic in my laboratory when I was on the faculty at
Emory University. The relationship between psychosocial variables and health
outcome was determined using a series of regression analyses, as a follow-up
to an investigation by Frank, Blount, and Brown
(1997), with the psychosocial
variables predicting the number of days the children were hospitalized 2 years
following the initial evaluation. Allison's results revealed that, among the
children with cancer, only parent variables were associated with the
children's subsequent health status. In fact, caregiver variables, including
parental coping and attributional style, accounted for over 20% of the
variance in the number of days the children were hospitalized
(Allison, 2001). Child
variables were not associated with subsequent health status. These findings
underscore the role of family functioning in children's adaptation to chronic
illness.
Another recent investigation conducted by Madan-Swain et al.
(2000) is salient here.
Madan-Swain et al. investigated identity formation among adolescent survivors
of childhood cancer. Participants were 52 adolescent survivors and their
mothers and 42 healthy adolescent counterparts and their mothers. Several
variables were associated with a fore-closed identity status (i.e., an
enduring tendency to internalize the value system of significant adults in
their lives), including family functioning characterized by greater levels of
conflict.
Family functioning is influenced in subtle and not-so-subtle ways by
chronic illness, and chronic illness in children and adolescents affects
family functioning. Nevertheless, the means by which the health care system
(i.e., nurses, physicians, psychologists, hospitals, social workers, home care
providers) mediates or moderates family functioning have been largely
unexplored. As pediatric psychology embarks on empirically validated
treatments, some investigators have called for an examination of these
interventions not only as they affect children's functioning but also as they
influence parental and family coping adaptation. Clearly, the family systems
literature is a model of a social ecological approach to the study of
pediatric psychology, with the seminal work of Kazak
(Kazak et al.,
1995,Kazak et al.,
1995; Kazak & Simms,
1996). This is one of the first programs of research in pediatric
psychology to acknowledge the influence of chronic illness on systems
including the family and health care providers (e.g., nursing staff).
Researchers argue, however, that family systems—based research can be
expanded even further by systematic examination of health care systems as they
interface with families.
Peers. Given the stressors associated with any chronic illness,
the effect of physical disease on children's and adolescents' peer
relationships would seem logical. Considerable research examines peer
relationships among children with chronic disease. In a careful review of this
literature, Schuman and La Greca
(1999) found some recent
evidence that children with chronic health conditions are at risk for peer
relationship difficulties, although these data vary. Alterations in physical
appearance may place children and adolescents with chronic illness at risk for
peer difficulties. In addition, diseases that limited physical activity and
mobility were associated with peer social difficulties and gender for children
with sickle cell disease (SCD). Peer perceptions of social competence in
children and adolescents with SCD were particularly vulnerable, with girls
being perceived by peers as less social and less well accepted than boys.
The available evidence on comorbidity of cognitive impairments and children
with chronic illness clearly indicates that cognitive impairments place
children at elevated risk for difficulties with peer relationships (for
review, see Nassau & Drotar,
1997). An investigation, conducted with Ken Whitt and other
colleagues at the University of North Carolina, supported this notion that
comorbidity of cognitive impairments places children at elevated risk for
social impairments (Levin-Newby, Brown,
Pawletko, Gold, & Whitt, 2000). Social skills and
psychological adjustment were examined for survivors of childhood cancer.
Cancer survivors included children and adolescents who ranged in age at
evaluation from 6 to 18 years. Dependent measures included teacher and parent
rating of social skills and adjustment and parent ratings of family
functioning. Social skills and psychological adjustment, as rated by both
parents and teachers, were primarily associated with academic functioning.
Family cohesiveness was found to account for nearly a third of the variance in
survivors' adjustment when rated by teachers. The length of time off treatment
accounted for a significant percentage of the variance in survivors'
adjustment when rated by parents. The findings demonstrate the role of
cognitive and learning impairments and, more important, family functioning in
influencing social skills and adjustment for children and adolescents who
survive cancer.
We recently investigated children with SCD who demonstrated cognitive
impairments as evidenced by magnetic resonance imaging. Findings revealed that
those children with cerebral vascular accidents (strokes) were at significant
risk for deficits in decoding emotions of African American children and adults
relative to their counterparts, who had a milder degree of disease
(Boni, Brown, Davis, Hsu, & Hopkins,
2001). In addition, children with SCD who sustained cerebral
vascular accidents also encountered particular difficulty in decoding of
subtle emotions, suggesting that these decoding deficits may play a role in
their difficulties with social situations. This may explain, in part, why
children with SCD have difficulties with peer relationships.
Within the ecological framework is the role of peer relationships in the process of disease adaptation. Not surprisingly, findings have revealed that children and adolescents who are isolated from peers generally encounter more difficulties with the acceptance of their own disease. To make things worse, support from peers is a critical component of disease adaptation.
Pediatric psychologists have examined the association between peer
relationships and management of disease, and peer interactions were found to
serve either a protective or risk factor in facilitating adherence to disease
regimens. If peers fail to support a child's regimen, the child's attempt at
peer conformity may lead to poor compliance with treatment demands. Parental
restrictions and over-protectiveness for a youngster with a chronic illness
may restrict opportunities for children's peer interactions
(Schuman & La Greca,
1999). Finally, the impact of children with chronic illness on
their healthy peers also needs systematic and careful investigation.
In summary, peer relationships are important mediators of disease
management. Additional research is sorely needed, particularly investigations
that extend beyond correlation methodology and allow for the systematic study
of specific bidirectional influences of peers, children's adaptation to their
disease, and the effects of chronic illness on classmates and peers
(Schuman & La Greca,
1999).
La Greca and Bearman (2000)
have argued for additional research on peer relationships in youngsters in
addition to the traditional study of peer acceptance. They suggest that
research specifically examine close friendships and the manner in which close
friends provide support for children and adolescents with a chronic illness.
This attention to close friendships and influences on health-risk behaviors is
certainly overdue.
Schools. Chronic illness has a disruptive effect on academic
achievement. This risk is particularly apparent for children who experience
cognitive impairments as either a direct effect of an illness (e.g., SCD) (for
review, see Bonner, Gustafson, Schumacher,
& Thompson, 1999) or, exemplified in our research, as a
consequence of treatment (e.g., toxic effects associated with radiation or
chemotherapy for the treatment of childhood leukemia) (Brown et al.,
1996,
1998;
Brown, Sawyer, Antoniou, Toogood, &
Rice, 1999). Other variables associated with school functioning,
including absenteeism, emotional difficulties related to returning to school,
treatment- related effects, and attitudes of parents and school personnel that
are associated with the school reentry process are important areas for
research. In particular, research on the role of these variables as either
mediators or moderators of academic functioning would be helpful in
understanding points and types of intervention.
School reentry was described by Madan-Swain, Fredrick, and Wallander
(1999) as a "dynamic,
ongoing process" requiring significant partnering between the family and
school personnel. Given the high interest among pediatric psychologists in
coping with disease stress, it is curious that there is so little research
related to school reentry. General issues pertaining to school reentry for
children and adolescents with cancer and burns have appeared in the extant
literature (Madan-Swain & Brown,
1991; Sexson & Madan-Swain,
1993,
1995), but additional data are
needed to extend current knowledge on school reentry and other chronic
illnesses.
Another important question that needs to be addressed is how schools might
accommodate the specific needs of children with chronic illness. For example,
relapsing illnesses such as asthma and SCD require ongoing adjustments from
families and schools (Madan-Swain et al.,
1999). Schools will need to modify attendance policies and
organize home instruction so that the child who misses several days from
school can achieve academic success (Kazak
et al., 1995,Kazak et al.,
1995; Madan-Swain et al.,
1999). Families must make reciprocal assurances that the child
does the work. Particularly as the prognoses of illnesses continue to improve,
more children and adolescents will face the task of school reentry.
Teachers clearly need additional training and preparation in the management
of children with chronic disease. In several surveys of public school
teachers, the majority has reported they had taught children with chronic
illnesses (Espersat, Moss, Roberts, Kerr, & Green, 1999;
Johnson, Lubker, & Fowler,
1988; Liptak & Weitzman,
1995; Lynch, Lewis, &
Murphy, 1993). However, less than half of these teachers reported
they had received adequate training for working with children with chronic
illness. School personnel will need additional preparation in the management
of children with chronic illness.
Finally, the impact of children with a chronic illness on the school environment is another important area worthy of careful investigation. In particular, the role of significant others, including principals, teachers, and caregivers, in assisting children and adolescents to accept the physical and cognitive limitations of some children who suffer from chronic disease will be an important research agenda for the next decade. Thus, careful attention to reciprocal influences as they affect adjustment of healthy and chronically ill children is an important next step for future research efforts in pediatric psychology.
The influence of chronological age and developmental age as these variables mediate school reentry has not been systematically examined for children with chronic illness. A significant interaction of development with both the phase of school reentry and the child's specific type of illness seems likely. As noted in the review of peer relationships, peers may play a particularly salient role in children's adjustment and adaptation to stress at school and home related to autonomy and disease management. These are exciting research areas destined for the next several decades, and as there is greater unification among the child practice divisions within the American Psychological Association (i.e., clinical child psychology, pediatric psychology, school psychology, neuropsychology), I invite your collaboration. These are some of our next best steps.
Health Care Providers
Surprisingly, there has been minimal research examining the effect of
children with chronic disease and their families on the health care system.
Although surveys have examined the influence of the health care system on
families (Kazak et al.,
1995,Kazak et al.,
1995), few studies have examined interrelationships among these
systems, including the effect of children's behavior on health care providers,
including physicians, nurses, and psychologists. Studies examining the
interrelationship of providers on children and families primarily have been in
pain management and HIV/AIDS.
Pain Management. That provider attitudes might influence treatment
decisions as well as treatment outcome has been well documented in the
pediatric pain literature. Some seminal studies in this area warrant review.
Armstrong and associates (Armstrong,
Pegelow, Gonzalez, & Martinez, 1992) developed and evaluated a
conceptual model designed to understand the influence of mediating factors,
such as professional knowledge, attitudes and beliefs about pain, and learning
history, on the interpretation of objective data and subsequent treatment
decisions. They evaluated the effect of disease history on pain assessment and
treatment decisions in an experimental study of children with SCD. Results
revealed that nurses, although not pediatric residents, provided lower doses
of narcotic analgesics to children with histories of frequent hospitalizations
for pain as opposed to occasional hospitalizations for pain. The nurses did
not differ in their ratings of pain for children with these histories. Neither
professional experience and training nor reported attitudes and beliefs about
pain in children were associated with the pattern of decision making.
Providers' concerns about addiction far exceeded mandated practice guidelines
and other indications for the management of pain in children and adolescents
with SCD.
In a similar investigation, Ross and associates
(Ross, Bush, & Crummette,
1991) investigated postoperative PRN analgesic medication
decisions for children in over 100 hospital nurses using an analogue pain
task. They found that nurses with greater narcotics knowledge reported that
they would administer more medication. Nurses provided more analgesics to
children exhibiting greater pain on the first postoperative day in comparison
to the third postoperative day. Prognosis of the child's condition also
influenced nurses' decisions on administration of medication. On the first
day, nurses administered less medication to the child with permanent sequelae,
but on the third postoperative day, they provided more. The data were
consistent across both high- and low-pain conditions. Again, this study
underscores problems with undermanagement of children's pain. Interestingly,
the adult oncology research documents that more liberal attitudes toward pain
management were associated with younger age of the physician and more
experience with specialized oncology units.
In a longitudinal investigation of children with leukemia designed to
examine the efficacy of a family-oriented intervention program for procedural
pain, employing both psychological and pharmacological therapies (for review,
see, Kazak, Blackall, Himelstein, Brophy, & Daller, 1995), Kazak et al.
(1996) evaluated the impact of
the intervention on medical, nursing, and psychosocial staff. Findings
revealed significant increases over time in the perceived efficacy of the
intervention. Although enthusiasm for the intervention decreased at the
initial follow-up evaluation, enthusiasm increased at later follow-up,
underscoring the importance of the impact of such a treatment program on staff
over the course of time. In addition, significant decreases over time were
found in staff depersonalization. This study is important because it
demonstrates the influence of an intervention not only on the family system
but also on larger systems including health care staff.
Brockopp and colleagues
(1998) conducted research
designed to examine barriers associated with the management of pain in
acute-care settings. Specific barriers were identified by their data,
including lack of knowledge, nonfacilitative attitudes, inconsistent
leadership, poor working relationships with coworkers, cultural and religious
biases, physicians' fear of legal repercussions, and a lack of available
resources. Weinstein et al.
(2000) coined the term
opiophobia to describe failure to use opiate analgesics because of
fear about toxicities and addiction.
Regardless of the terminology, providers clearly influence decisions about
treatment and the intensity with which treatment is implemented. In a similar
study of nearly 500 AIDS care providers, Breitbart, Kaim, and Rosenfeld
(1999) indicated that the most
frequently endorsed barriers to the management of pain were the lack of
knowledge among clinicians about pain management and concerns about substance
abuse or addiction. Interestingly, experience in the management of pain in
patients with AIDS was inversely associated with the endorsement of barriers
related to pain management expertise and concerns about substance abuse.
Pediatric psychologists may have fears and biases as well as individual
experiences that may influence attitudes and decisions in assessment and
intervention techniques. Given the recent focus in pediatric psychology on
empirically validated treatments, attitudes and decision making for treatment
remain important areas in need of systematic research.
HIV/AIDS. A barrier to providing care to persons with HIV and AIDS
is another exemplar of the importance of examining the influence of physician
behavior on children's health. Few studies on pediatric HIV and AIDS could be
located, so for this reason studies with adult participants will be reviewed.
McDaniel, Carlson, Thompson, and Purcell
(1995) examined medical
student attitudes as they affected care for patients who were HIV-positive or
had AIDS. These investigators administered to 63 medical students a 25-item
survey specifically designed for health care professionals. Results of factor
analysis revealed three major groups of medical students with regard to
attitudes. Specifically, the largest group generally endorsed positive
attitudes about patients with HIV/AIDS. Despite these positive attitudes, two
of the subgroups reported that they would refer such patients to another
physician. Interestingly, one subgroup reported being more uncomfortable with
homosexual behavior and with HIV-seropositive patients than they did with
patients with other infectious diseases. This group also expressed discomfort
with taking a patient's sexual history. Finally, and more important, one of
the groups expressed discomfort with physically touching patients who are
HIV-seropositive.
The McDaniel investigation (McDaniel et
al., 1995) clearly showed how physician attitudes and beliefs can
impede even simple diagnostic screening and result in a failure to treat. The
findings show that personal attitudes of physicians may interfere with their
willingness to manage and treat certain diseases. These data have significant
implications because many individuals suspected of or diagnosed with HIV or
AIDS come to the attention of primary care providers
(Epstein et al., 1993) who
will be responsible for their care. In addition, these findings suggest that
intervention on the level of providers as well as patients in pediatric
psychology is wise. For example, Dimick, Levinson, Manteuffel, and Donnellan
(1996) found that nurse
practitioners' exposure to HIV-positive patients was associated with less
anxiety and fear in caring for individuals with HIV or AIDS. This certainly
supports intervention programs that provide support and reduce anxiety for
health care providers who care for persons with HIV or AIDS. Similar programs
are warranted for diseases that do not instill the anxiety that HIV does.
Providers' Roles, Stressors, and Strains. Our nursing colleagues
may be the most progressive in looking at their own profession, behaviors, and
attitudes and how these variables affect clinician decisions. Many of the
innovative features in nursing have been impressive, including the
establishment of their own institute at the National Institutes of Health and
their licensing act that mandates uniform requirements across the 50 states
and territories and allows for reciprocity of licenses across all of these
jurisdictions. As pediatric psychologists, we might strive for some of their
professional accomplishments. The profession also does a great deal for their
members in examining their own social ecology. Topics include grief, burnout,
and stress among members and how these factors may influence the care of
patients (Hinds et al., 1994;
Marino, 1998). Although the
effects on children of the loss of a family member have been examined, coping
with the death of a pediatric patient has yet to be examined by pediatric
psychologists. Our grief at the loss of our patients needs to be examined
systematically and is an important area for future research.
On a similar note, pediatric psychologists are well aware of role-related
stressors associated with being the caregiver of a child with a chronic
illness (Ievers, Drotar, Dahms, Doershuk,
& Stern, 1994;
Ievers-Landis et al., 1999;
Ievers et al., in press), but role-related stressors and occupational hazards
among pediatric psychologists are unclear. Occupational hazards of airline
pilots, pharmacists, and coal miners are well documented, but pediatric
psychologists who manage many professional (teacher, therapist, researcher,
administrator) and personal (mother, father, baseball coach) roles are almost
un-investigated. Role-related strains and occupational hazards in our
profession are vitally important in the care of our patients. Olson and
colleagues (1998) examined
peak experiences and "nadir" rolerelated experiences and the
consequences of such experiences on professional work. Peak experiences
included patients dying, close relationships between nurses and patients, and
seeing patients recover and lead normal lives. Nadir experiences included
nurses' regrets over a perceived inadequacy in managing a situation and
feelings of inadequacy in relieving suffering or providing comfort to
patients. Similar research should be conducted on other health care providers,
including pediatric psychologists.
The importance of a social ecological approach is shown in an investigation of the association between chronic professional stress in nurses and immune functioning. Psychoimmunology has been of widespread interest among health psychologists, but we have examined immunologic functioning only in our patients, not in ourselves.
De Gucht, Fischler, and Demanet
(1999) studied 60 nurses who
were selected on the basis of high and low scores on measures of professional
stress and psychopathology. The investigation revealed that chronic
professional stress was associated with immune dysfunction, including signs of
immune activation and immune suppression. Immunosuppression was most
pronounced in the group that had high stress and few symptoms of
psychopathology, whereas a decrease in immune functioning was highest for the
group that had high stress and a high frequency of symptoms of
psychopathology. The findings suggest that psychopathology is a significant
mediator of specific immune dysfunctions. Stress as a strong predictor of
psychopathology is all the more reason to study us as health care providers.
These findings have significant implications for pediatric, child, and
adolescent psychologists who endure high stress. With all the changes in the
health care system, most pediatric psychologists likely would admit to
significant stressors and strains.
More systematic investigation of health care providers is necessary. How attitudes and other areas of functioning influence provider treatment and care decisions is a crucial direction for us. It is only fair to recognize and examine the influence of provider variables on the behavior of the children and their families whom they serve. This is the next best step for pediatric psychology, a step toward social ecology.
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In this article I have argued that there are reciprocal interactions between children with chronic illness and their systems around them, including cultural systems, family systems, peers, schools, and health care providers. To date, the field of pediatric psychology has had its most productive research endeavors in studying children affected by illness. Given the number of systems that influence children and how children influence systems, there has been far too little study of these issues in pediatric psychology. System issues are so relevant for the study of children that the examination of these systems should be the standard in studies of chronic disease and its impact on adjustment and adaptation, similar to traditional variables that have been included in research studies of children, such as social class, chronological age, and intellectual functioning.
I hope that several lines of research will emerge over the next decade including the careful examination of families as they interact with health care systems and the mediating and moderating effects of these interactions on children's adaptation and adjustment to disease. Clearly, peers serve an important role in providing support to children and adolescents with chronic illness that, in turn, influences adaptation to illness and enhances disease management. Greater research focus is needed on the influence of illness on peers, as well as the influence of peers on health-risk behaviors in both chronically ill and healthy children and adolescents. The systems in which children with chronic illness interact with peers also need careful study, particularly as these systems influence pediatric populations. Little research has examined important issues, including school reentry of children with chronic disease as well as the capacity of the educational system to accommodate to the needs of children with chronic illness. Further, a critical gap exists in the pediatric psychology literature related to the role of health care providers in the treatment outcome of children and adolescents from pediatric populations. These include providers' attitudes and biases that may influence decision making and the management of illness and ultimately their influences on treatment outcome.
Finally, given the economic forces that have significantly influenced
delivery of health care, pediatric psychologists will need to examine
carefully the economic impact of empirically validated treatments as we try to
enhance adaptation and adjustment to disease in children and their families.
For example, it has become fairly well recognized that when children and their
caregivers employ more active coping strategies in managing pain, they rely
less on providers and the health care system for pain management (for review,
see Tarnowski, Brown, Dingle, &
Dreelin, 1998). Given that adequate adjustment and active coping
are associated with less utilization of health care resources (e.g.,
outpatient physician visits, emergency room visits, hospitalizations), we have
neglected to consider the economic implications of this important work. As we
are increasingly challenged to provide psychological services for pediatric
populations and in many cases must vigorously advocate for these services on
behalf of our clients and their families, we should also examine financial
systems and economic impact as dependent variables in treatment outcome
studies.
The study of systems and their impact on psychological functioning has been the standard of many specialty practice disciplines in psychology, including industrial and organizational psychology, family psychology, school psychology, and community psychology. I hope that the reciprocal examination of systems and pediatric populations will emerge as a high research priority over the next decade. As greater research emerges in this area, these influences should be embraced as part of the practice domain of pediatric psychology. The end result will hopefully enhance the quality of life for the children and adolescents with whom we work.
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Acknowledgments |
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This article is based in part on the author's Presidential Address to the Society of Pediatric Psychology (Division 54 of the American Psychological Association) at the 108th Annual Meeting of the American Psychological Association, Washington, DC, on August 6, 2000.
Received October 27, 2000; revision received April 1, 2001; accepted May 18, 2001
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|---|
Allison, S. (2001). The relationship between parental and child adjustment and number of hospitalizations in children with cancer. Unpublished manuscript, George Washington University, Department of Psychology, Washington, DC.
Armstrong, F. D., Pegelow, C. H., Gonzalez, J. C., & Martinez,
A. (1992). Impact of children's sickle cell history on nurse and
physician ratings of pain and medication decisions. Journal of
Pediatric Psychology, 17,
651-664.
Barakat, L. P., & Kazak, A. E. (1999). Family issues. In R. T. Brown (Ed.), Cognitive aspects of chronic illness in children (pp. 333-354). New York: Guilford.
Boni, L., Brown, R. T., Davis, P., Hsu, L., & Hopkins, K.
(2001). Decoding and emotions in children and adolescents with
sickle cell disease and magnetic resonance imaging. Journal of
Pediatric Psychology, 26,
309-319.
Bonner, M. J., Gustafson, K. E., Schumacher, E., & Thompson, R. T. (1999). The impact of sickle cell disease on cognitive functioning and learning. School Psychology Review, 28, 182-194.[Web of Science]
Bradford, W. D., Chen, J., & Krumholtz, H. M. (1999). Under utilization of beta-blockers after myocardial infarction: Pharmacoeconomical implications. Pharmacoeconomics, 15, 257-268.[Web of Science][Medline]
Breitbart, W., Kaim, M., & Rosenfeld, B. (1999). Clinicians' perceptions of barriers to pain management in AIDS. Journal of Pain Symptom Management, 18, 203-212.[Web of Science][Medline]
Brockopp, D. Y., Brockopp, G., Warden, S., Wilson, J., Carpenter, J. S., & Vandeveer, B. (1998). Barriers to change: A pain management project. International Journal of Nursing Studies, 35, 226-232.[Web of Science][Medline]
Bronfenbrenner, U. (1979). The ecology of human development. Cambridge, MA: Harvard University Press.
Brown, R. T., Dreelin, E., & Dingle, A. D. (1997). Neuro-psychological effects of stimulant medication on children's learning and behavior. In C. R. Reynolds & E. Fletcher-Janzen (Eds.), Handbook of clinical child neuropsychology (pp. 539-572). New York: Plenum.
Brown, R. T., Madan-Swain, A., Walco, G. A., Cherrick, I., Ievers,
C. E., Conte, P., Vega, R., Bell, B., & Lauer, S. J. (1998).
Cognitive academic late effects among children previously treated for acute
lymphocytic leukemia receiving chemotherapy as prophylaxis. Journal
of Pediatric Psychology, 23,
219-228.
Brown, R. T., & Sawyer, M. G. (1998). Medications for school-age children: Effects on learning and behavior. New York: Guilford.
Brown, R. T., Sawyer, M. G., Antoniou, G., Toogood, I., & Rice, M. (1999). Longitudinal follow-up of the intellectual and academic functioning of children receiving central nervous system-prophylactic chemotherapy for leukemia: A four-year final report. Journal of Developmental and Behavioral Pediatrics, 20, 373-377.[Web of Science][Medline]
Brown, R. T., Sawyer, M. G., Antoniou, G., Toogood, I., Rice, M., Thompson, N., & Madan-Swain, A. (1996). A 3-year follow-up of the intellectual and academic functioning of children receiving central nervous system prophylactic chemotherapy for leukemia. Journal of Developmental and Behavioral Pediatrics, 17, 392-398.[Web of Science][Medline]
Brown, R. T., & Sexson, S. B. (1988). A controlled trial of methylphenidate on cardiovascular response in attention deficit hyperactivity disordered adolescents. Journal of Adolescent Health Care, 10, 179-183.
DeGucht, V., Fischler, B., & Demanet, C. (1999). Immune dysfunction associated with chronic professional stress in nurses. Psychiatry Research, 18, 105-111.
Dimick, L. A., Levinson, R. M., Manteuffel, B. A., & Donnellan, M. (1996). Nurse practitioners' reactions to persons with HIV/AIDS: The role of patient contact and education. Journal of the American Academy of Nurse Practitioners, 8, 419-426.[Medline]
Epstein, R. M., Christie, M., Frankel, R., Rousseau, S., Shields,
C., Williams, G., & Suchman, A. L. (1993). Primary care of
patients with human immunodeficiency virus infection. The physician's
perspective. Archives of Family Medicine,
2, 159-167.
Esperat, M. C., Moss, P. J., Roberts, K. A., Kerr, L., & Green, A. E. (1999). Special needs children in the public schools: Perceptions of school nurses and school-teachers. Issues in Comprehensive Pediatric Nursing, 22, 167-182.[Medline]
Frank, N. C., Blount, R. L., & Brown, R. T. (1997). Attributions, coping and adjustment in children with cancer. Journal of Pediatric Psychology, 4, 563-576.
Hinds, P. S., Puckett, P., Donahue, M., Milligan, M., Payne, K., Phipps, S., Davis, S. E., & Martin, G. A. (1994). The impact of a grief workshop for pediatric oncology nurses on their grief and perceived stress. Journal of Pediatric Nursing, 9, 388-397.[Medline]
Ievers-Landis, C. E., Brown, R. T., Drotar, D., Caplan, D., Pishevar, B., & Lambert, R. G. (1999). Knowledge of physician prescriptions and adherence to treatment among children with cystic fibrosis and their mothers. Journal of Developmental and Behavioral Pediatrics, 20, 335-343.[Web of Science][Medline]
Ievers-Landis, C. E., Brown, R. T., Drotar, D., Bunke, V., & Walker, A. (in press). Situational analysis of parenting problems for caregivers of children with sickle cell syndrome. Journal of Developmental and Behavioral Pediatrics.
Ievers, C. E., Drotar, D., Dahms, W. T., Doershuk, C. F., &
Stern, R. C. (1994). Maternal child-rearing behavior in three
groups: Cystic fibrosis, insulin-dependent diabetes mellitus, and healthy
children. Journal of Pediatric Psychology,
19, 681-687.
Johnson, M. P., Lubker, B. B., & Fowler, M. G. (1988). Teacher needs assessment for the educational management of children with chronic illnesses. Journal of School Health, 58, 232-235.
Kazak, A. E. (1989). Families of chronically ill children: A systems and social ecological model of adaptation and challenge. Journal of Consulting and Clinical Psychology, 57, 25-30.[Web of Science][Medline]
Kazak, A. E., Blackall, G. F., Boyer, B., Brophy, P., Buzaglo, J., Penati, B., & Himelstein, B. (1996). Implementing a pediatric leukemia intervention for procedural pain: The impact on staff. Family Systems and Health, 14, 43-56.
Kazak, A. E., Blackall, G., Kimelstein, B., Brophy, P., & Daller, R. (1995). Producing systemic change in pediatric practice: An intervention protocol for reducing stress during painful procedures. Family Systems and Medicine, 13, 173-185.
Kazak, A. E., Segal-Andrews, A. M., & Johnson, K. (1995). Pediatric psychology research and practice: A family/systems approach. In M. Roberts (Ed.), Handbook of pediatric psychology (pp. 84-104). New York: Guilford.
Kazak, A. E., & Simms, S. (1996). Children with life-threatening illnesses: Psychological difficulties and interpersonal relationships. In F. Kaslow (Ed.), Handbook of relational diagnosis and dysfunctional family patterns (pp. 225-238). New York: Wiley.
Krumholz, H. M., Chen, Y. T., Vaccarino, V., Wang, Y., Radford, M. J., Bradford, W. D., & Horwitz, R. I. (2000). Correlates and impact on outcomes of worsening renal function in patients > or = 65 years of age with heart failure. American Journal of Cardiology, 85, 1110-1113.[Web of Science][Medline]
La Greca, A. M., & Bearman, K. (2000). Children
with pediatric conditions: Can peers' impressions be managed? And what about
their friends? Journal of Pediatric Psychology,
25, 147-149.
Levin-Newby, W. L., Brown, R. T., Pawletko, T. M., Gold, S. H., & Whitt, J. K. (2000). Social skills and psychological adjustment of child and adolescent cancer survivors. Psycho-Oncology, 9, 113-126.[Medline]
Liptak, G. S., & Weitzman, M. (1995). Children with chronic conditions need your help at school. Contemporary Pediatrics, 12, 64-80.[Medline]
Lynch, E. W., Lewis, R. B., & Murphy, D. S. (1993). Educational services for children with chronic illnesses: Perspectives of educators and families. Exceptional Children, 59, 210-220.[Web of Science][Medline]
Marino, P. A. (1998). The effects of cumulative grief in the nurse. Journal of Intravenous Nursing, 21, 101-104.
McDaniel, J. S., Carlson, L. M., Thompson, N.J., & Purcell, D. W. (1995). A survey of knowledge and attitudes about HIV and AIDS among medical students. Journal of the American College of Health, 44, 11-14.
Madan-Swain, A., & Brown, R. T. (1991). Cognitive and psychosocial sequelae for children with acute lymphocytic leukemia and their families. Clinical Psychology Review, 11, 267-294.
Madan-Swain, A., Brown, R. T., Foster, M., Vega, R., Byars, K.,
Rodenberger, W., Bell, B., & Lambert, R. (2000). Identity in
adolescent survivors of childhood cancer. Journal of Pediatric
Psychology, 25,
105-115.
Madan-Swain, A., Fredrick, L., & Wallander, J. L. (1999). Returning to school after a serious illness or injury. In R. T. Brown (Ed.), Cognitive aspects of chronic illness in children (pp. 312-332). New York: Guilford.
Nassau, J. H., & Drotar, D. (1997). Social
competence among children with central nervous system-related chronic health
conditions: A review. Journal of Pediatric Psychology,
22, 771-793.
Olson, M. S., Hinds, P. S., Euell, K., Quargnenti, A., Milligan, M., Foppiano, P., & Powell, B. (1998). Peak and nadir experiences and their consequences described by pediatric oncology nurses. Journal of Pediatric Oncology Nursing, 15, 13-24.
Rolland, J. S. (1990). Anticipatory loss: A family systems developmental framework. Family Process, 29, 229-244.[Web of Science][Medline]
Ross, R. S., Bush, J. P., & Crummette, B. D.
(1991). Factors affecting nurses' decisions to administer PRN
analgesic medication to children after surgery: An analog investigation.
Journal of Pediatric Psychology,
16, 151-167.
Schuman, W. B., & LaGreca, A. M. (1999). Social correlates of chronic illness. In R. T. Brown (Ed.), Cognitive aspects of chronic illness in children (pp. 289-311). New York: Guilford.
Sexson, S. B., & Madan-Swain, A. (1993). School reentry for the child with chronic illness. Journal of Learning Disabilities, 26, 115-125.
Sexson, S. B., & Madan-Swain, A. (1995). The chronically ill child in the school. School Psychology Quarterly, 10, 359-368.
Strickland, T. L., Lin, K. M., Fu, P., Anderson, D., & Zheng, Y. (1995). Comparison of lithium ratio between African-American and Caucasian bipolar patients. Biological Psychiatry, 37, 325-330.[Web of Science][Medline]
Swenson, C. C., Randall, J., Henggeler, S. W., & Ward, D. (2000). The outcomes and costs of an interagency partnership to serve maltreated children in state custody. Children's Services: Social Policy, Research and Practice, 3, 191-209.
Tarnowski, K., Brown, R. T., Dingle, A. D., & Dreelin, E. (1998). Pain management. In R. T. Ammerman & J. V. Campo (Eds.), Handbook of pediatric psychology and psychiatry (vol. 2, pp. 1-15). Boston: Allyn & Bacon.
Thompson, R. J., Jr., Gil, K. M., Burbach, D. J., Keith, B. R.,
& Kinney, T. R. (1993). Psychological adjustment of mothers
of children and adolescents with sickle cell disease: The role of stress,
coping methods, and family functioning. Journal of Pediatric
Psychology, 18,
549-559.
Thompson, R. J., Jr., & Gustafson, K. F. (1996). Adaptation to chronic childhood illness. Washington, DC: American Psychological Association.
Thompson, R. J., Jr., Gustafson, K. E., George, L. K., & Spock,
A. (1994). Change over a 12-month period in the psychological
adjustment of children and adolescents with cystic fibrosis.
Journal of Pediatric Psychology,
19, 189-203.
Weinstein, S. M., Laux, L. F., Thornby, J. I., Lorimor, R. J., Hill, C. S., Thorpe, D. M., & Merrill, J. M. (2000). Physicians' attitudes toward pain and the use of opioid analgesics: Results of a survey from the Texas Cancer Pain Initiative. Southern Medical Journal, 93, 479-487.[Web of Science][Medline]
Whalen, C. K., Henker, B., & Dotemoto, S. (1980).
Methylphenidate and hyperactivity: Effects on teacher behaviors.
Science, 208,
1280-1282.
Whalen, C. K., Henker, B., & Dotemoto, S. (1981). Teacher response to the methylphenidate (Ritalin) versus placebo status of hyperactive boys in the classroom. Child Development, 52, 1005-1014.[Web of Science][Medline]
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