A School Reentry Program for Chronically Ill Children

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A School Reentry Program for Chronically Ill Children
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   Journal of School Psychology, Vol. 36, No. 3, pp. 261–279, 1998Copyright   ©  1998 Society for the Study of School Psychology Printed in the USA. All rights reserved0022-4405/98 $19.00  .00 PII S0022-4405(98)00012-0 A School Reentry Program for ChronicallyIll Children Frances F. Worchel-Prevatt, Robert W. Heffer,Bruce C. Prevatt, Jennifer Miner, Tammi Young-Saleme,Daniel Horgan, and Molly A. Lopez  Texas A & M University  William A. Rae and Lawrence Frankel  Scott and White Hospital  Children with chronic illness face many challenges as they cope with the medicalmanagement of their disease. One of the best ways to promote a sense of normalcy for these children is to promote regular school attendance. A positive experienceat school can help children achieve a sense of mastery and control, increase self-esteem, promote fulfilling peer relationships, and decrease emotional trauma re-sulting from the disease. Recent federal legislation regarding children with medicalproblems increases the likelihood that a positive school experience will be devel-oped for chronically ill students. This article describes a school reintegration pro-gram aimed at overcoming the numerous psychological, physical, environmental,and family-based deterrents to school reentry for chronically ill children. The pro-gram uses a systems approach to children’s mental health, with an emphasis onmultiple aspects of the child’s environment (i.e., family, medical personnel, peers,and teachers).  ©  1998 Society for the Study of School Psychology. Published by Elsevier Science Ltd Keywords:  School reentry, Chronic illness, Systems interventions.  A recent advance in the field of school psychology has been a focus onchildren with health related difficulties. For example, recent issues of bothSchool Psychology Review and School Psychology Quarterly have devotedmini-series to children’s health care issues. Much of this interest has beenspurred by public policy changes. Beginning with the Education of theHandicapped Act Amendments of 1986 (PL 99-457), education law pre-scribed interdisciplinary collaborationamong parents and medical, psycho-logical, and educational professionals to develop educational plans for chil-dren with medical conditions identified in the preschool years (Power, Received September 14, 1995; accepted June 6, 1997. Address correspondence and reprint requests to Frances F. Worchel-Prevatt, Department of Human Services, Stone 215, Florida State University, Tallahassee, FL 32306. E-mail:Fprevatt@coe.fsu.edu. 261  262 Journal of School Psychology DuPaul, Shapiro, & Parrish, 1995). The 1990 reauthorization of the Educa-tion of the Handicapped Act (IDEA; PL 101-476) further solidified rightsof ‘‘Other Health Impaired’’ children to comprehensive assessment andspecial education services to address their medical, educational, and socialneeds. Finally, the Preventive Health Amendments of 1992 (PL 102-531)mandate coordination between the health care and educational systems intraining educators about risks associated with medical conditions. Thesechanges in federal policy have created such a demand for specialized ser- vices that a new subspecialty, labeled pediatric school psychology, is beingpromoted (Power et al., 1995).This article describes a school reintegration program for chronically illchildren that is congruent with ecological service models which considerthe interaction of child, family, hospital, school, and community in dealing with school health issues (Farmer & Peterson, 1995). In particular, theDisability-Stress-Copingmodel(Wallander, Varni,Babani, Banis,&Wilcox,1989) will be used to illustrate mental health issues of families with chroni-callyillchildren. Thearticlewill discussthepsychological impactofchronicillness on children and document the importance of school attendance inpromoting healthy adaptation. A review of previous school reentry pro-grams will be followed by a description and case study of our program. Thearticle is intended to describe a model program which can be implementedby pediatric psychologists working in medical centers or by school basedpractitioners working in conjunction with regional medical facilities. PSYCHOLOGICAL IMPACT OF PEDIATRIC CHRONIC ILLNESS Manyinvestigatorshave reportedthat chronically ill childrenhavedifficulty returning to school after diagnosis or prolonged hospitalizations (Baskin,Saylor, Furey, Finch, & Carek, 1983; Sexson & Madan-Swain, 1993). Thisdifficulty is frequently not due to medical complications. Rather, the illchildren fear teasing by their classmates due to changes in appearance,are anxious about being able to keep up with work, and feel isolated fromtheir peers (Henning & Fritz, 1983; McCormick, 1986). Healthy peers, who are uncertain about their physical adequacy, may reject the illchild as a friend. Thus, instead of receiving security and support fromfriends, the ill child may experience increased stress due to social iso-lation.In addition to social isolation, the cancer patient, for example, will likely be concerned about changes in his or her appearance, which affects self perception (Worchel, 1992). Investigators have determined that anxiety levels increase in children with cancer and sickle cell; feelings of anger,depression, and helplessness are also evident (Kellerman, Zeltzer, Ellen-berg, Dash, & Rigler, 1980; Morgan & Jackson, 1986; Taylor, 1979). Zeltzer  Worchel-Prevatt et al. 263 (1980) found that some pediatric oncology patients regress and withdraw, whereas others increase their risk-taking behaviors. Orr, Weller, Satter- white, andPless (1984)foundthatchronically ill adolescentswere lesslikely to have a driver’s license, less likely to attend school full-time, and morelikely to drop out of school than their healthy peers. In addition, chroni-cally ill adolescents dated significantly less and made fewer plans regardingthe future than did a control group of healthy teenagers.The effects of chronic illness on children must be considered from adevelopmental context. For example, grade school children are dealing with issues of competition, self worth (Erikson, 1968), mastery and self effi-cacy (Bandura, 1981), and ego development (Freud, 1946). Adolescentsare undergoing a very turbulent period in terms of their social-emotionaldevelopment; developmental tasks that must be dealt with include estab-lishment of emotional independence, peer group acceptance, develop-ment of a comfortable body image, sexual role identity, separation fromparental value systems, as well as future goal orientation and career planing(Coopersmith, 1967,Erikson, 1968, Hall,1916;Kagan, 1976,Zeltzer,1980). A developmental approach must also consider the child’s cognitive stageand abilities (Flavell, 1985, Piaget, 1952). Developmental theory will guideour understanding of how children obtain, process, and use information.For example, does a particular child have the ability to conceptualize, takealternate perspectives, or think hypothetically? For children with chronicillness, this will be important as we evaluate their ability to engage in andthink about their disease and future ramifications, and comprehend andengage in discussions about medical considerations. Issues such as in-formed consent and treatment planning will be significantly impacted by the patient’s cognitive abilities (Rae, Worchel, & Brunnquell, 1995).Teachers of chronically ill students report being concerned due to lackof knowledge about the disease, are unsure about realistic expectations,and worry about being able to handle the reactions of classmates (Chekryn,Deegan, & Reid, 1987; Davis, 1989). Likewise, parents may feel guilty about their child’s disease, and react with overprotectiveness and unrealistic fears(Henning & Fritz, 1983; Lawson, 1977). Thus, the child must cope withthe knowledge that he or she is a source of worry and financial strain forthe family and must deal with ambiguities regarding the future (Farell &Hutter, 1980).In summary, a school reintegration program must consider multiple fac-tors. Knowledge of common psychosocial concerns advises us as to areas which may need to be addressed: peer relationships, body image, and emo-tional reactions such as depression or anxiety. A developmental perspective will insure an appropriate level when determining both the content andnature of the interventions. For example, class discussions, question andanswer periods, demonstrations, or puppet plays will be considered de-  264 Journal of School Psychology pending on cognitive capabilities. Interventions with teenagers will requiremore attention to peer relations and future orientation, whereas interven-tions for younger children will center more around mastery and control. CONCEPTUAL MODEL OF CHRONIC ILLNESS AND CHILDREN’SMENTAL HEALTH The Disability-Stress-Coping model (Wallander, Varni, Babani, Banis, & Wilcox, 1989) provides a conceptual framework for evaluating pediatricchronic illness as an interplay between individual functioning, family func-tioning, and environmental variables. The model recognizes that there isa wide range of psychosocial adaptation among chronically ill children,and that outcomes are mediated by a host of interrelated variables (Brown,Doepke, & Kaslow, 1993). This model proposes that there are both direct and indirect causal paths associated with adaptation to chronic illness.The model uses a framework which delineates both risk and resistancefactors. Risk factors include disease parameters, functional independence,and psychosocial stressors. Resistance factors include intrapersonal factors,social-ecological factors, and stress processing. Adaptation, which includesmental health, social functioning, and physical health, is influenced, to varying degrees, by all of the risk and resistance factors. The model is wellsuited to conceptualization of a school reintegration program. The riskfactors take into account severity levels and handicaps associated with spe-cific diseases. For example, it is hypothesized that severity of the child’sphysical disorder would have an effect on both behavioral and social adjust-ment. Investigations of this link speculate that disease parameters may havean indirect effect on adjustment by causing increased psychosocial stress(Wallander, Pitt, & Mellins, 1990).Psychological stressors for pediatric cancer patients, for example, wouldinvolve major life events such as relapse, amputation, or failing a grade, as well as daily hassles such as missing school for routine check-ups and cop-ing with alienation from peers due to physical handicaps. In general, pedi-atric illness is believed to produce a chronic level of strain inherent in car-ing for the child (Varni & Wallander, 1988; Wallander & Marullo, 1989).On the resistance side, a great deal of weight is given to family dynamics.Social-ecological sources of resistance include the family environment, so-cial support networks, adaptation strengths of individual family members,and utilitarian resources. Several research studies have found a link be-tween family resources and adjustment. For example, higher family cohe-sion is related to better adjustment in children with sickle cell disease(Moise, 1980), whereas lower family conflict is associated with greater self-esteem in children with physical disabilities (Varni, Rubenfeld, Talbot, &Setoguchi, 1989).Intrapersonal characteristics of the child are also considered, such as  Worchel-Prevatt et al. 265 temperament, competence, problem solving abilities, and coping strate-gies. Both child characteristics and family variables are seen as moderator variables, affecting the cognitive appraisal and coping strategies of boththe child and family. These strategies, referred to as stress processing, aredirectly related to adaptation. Again, adaptation is a multi-level variable,encompassing mental health, social functioning, and physical health. Forfurther research supporting this model, the reader is referred to the follow-ing sources: Silver, Stein, and Dadds, 1994; Van Dongen-Melman et al.,1995; Wallander, Varni, Babani, DeHaan, Wilcox, and Banis, 1989; Wal-lander and Venters, 1995.In designing a program to facilitate school adjustment, this model givesdirection in terms of the stressors to consider (e.g., severity of disease, daily routines, peer reactions), elements to include in the program (e.g., family support, teacher support), as well as outcomes to evaluate (e.g., compe-tence, coping strategies). Specifically, it is assumed that children are at riskbased on the severityand nature oftheir illness.Therefore, one component of the program gathers information concerning specific disability parame-ters and areas of need vis-a`-vis school functioning. Likewise, psychosocialstressors are evaluated, such as reactions of teachers, family difficulties, orother school related difficulties. These areas constitute the risk factors foreach child and family. Next, specific interventions are planned for eachfamily based on goals/areas of concern identified by the family, school, ormedical personnel. Positive resistance factors are highlighted, and areasof deficit are targeted for intervention. For example, interventions might include referral to hospital based social service agencies, programs to pro-mote peer acceptance, consultation with teachers regarding educationalobjectives, family sessions to promote effective problem solving, or help inovercoming architectural barriers at school. Finally, these components areevaluated in relation to measures of adaptation to determine the impact of the program on emotional, social, and educational functioning. IMPORTANCE OF SCHOOL ATTENDANCE TO PROMOTE ADAPTIVEFUNCTIONING Regular school attendance can promote normal growth and development in children with chronic illness (Baskin et al., 1983). Attendance servesto promote peer relationships, socialization, academic success, and self-identification as an important member of society (Davis, 1989). Returningto school after prolonged hospitalization provides a symbolic message that the child is better, provides hope for the future, and helps the child regaina sense of control over his or her world (Ross, 1984).School attendance for chronically ill children may be problematic for a variety of reasons (Henning & Fritz, 1983; Lansky, Cairns, & Zwartjes,1983). Extended absences and missed work may leave the student feeling
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