Issues in Comprehensive Pediatric Nursing, 22:13–25, 1999Copyright ã 1999 Taylor & Francis

0146-0862/99 $12.00 + .00 13

A CONCEPTUAL FRAMEWORK FOR STUDYING CHILDADAPTATION TO TYPE 1 DIABETES

KIM SIARKOWSKI AMER, BSN, MS, PhDDePaul University, Chicago, Illinois, USA

Understanding the challenges of managing a chronic illness, nurses provide a keycomponent of care to patients and families who struggle daily with the demands ofself-management and the balance of daily life challenges. Even though nursesempathize with the issues of chronic illness management, the complexity of managingsuch clients has not been articulated in a theoretical or research base. Hence, thenursing process related to facilitating adaptation to childhood chronic illness remainsin a formative stage. My article presents a conceptual framework that can guide thestudy of children and families coping with children with Type 1 diabetes. Theframework also may prove useful for other chronic illnesses.

Many adjustments are required when children are diagnosed with chronicillnesses that affect both the child and the family. The child must copewith biological changes, social and psychological differences related tohaving a chronic illness, and the ever present fear of being different.Developmental changes in the child continue despite the added stress ofmanaging a chronic illness. Families need to make schedule adjustments,coordinate school activities, and attempt to integrate the child back intothe social and ecological environment despite the demands of the illness.

For a child with Type 1 diabetes, adapting to the illness involves inte-grating responses from the physiological, psychological, social, and cul-tural systems of the individual (Austin, 1990; Betschart, 1993; Bond,1986; Drotar, 1997; Grey, Cameron, & Thurber 1991; Swift, Seidman, &Stein, 1967). The child adapting to Type 1 diabetes must have one ormore insulin injections and frequent blood tests throughout the day, mealswith prescribed calories at precise times during the day, and a closelymonitored exercise and activity schedule (Betschart, 1993). The internaland external demands of the illness change as the child grows and devel-ops and as interests and activities change.

Research to date has not adequately examined, from the child’s per-spective, what the experience of having Type 1 diabetes is like and how

Received 22 November 1998; accepted 20 March 1999.Address correspondence to Kim Siarkowski Amer, Associate Professor, DePaul University

Department of Nursing, 802 W. Belden McGaw Hall 142C, Chicago, IL 60614, USA.

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it affects the child and his or her view of self. The first step in examiningthis concept is the use of a guiding framework. The perspective of thechild is a key component to assessing a family and planning appropriateinterventions with the child and family.

In studies reviewed, a multitude of approaches were used. This multi-tude includes a range of study designs and sample sizes with few clearconceptual frameworks. The following discussion of a risk and resistancemodel and the related literature review of child adaptation to Type 1diabetes provides clearer definitions for child adaptation, related con-cepts, and a guiding framework for practice and study of the concept.

RESEARCH ON CHILD ADAPTATIONTO TYPE 1 DIABETES

Children with Type 1 diabetes have been studied in relation to adapta-tion to chronic illness in the disciplines of nursing, psychology, socialwork, and medicine. Early studies on child adaptation to Type 1 diabetesfocused on the etiology of psychopathology in children and families andused research methods with limited reliability and validity (Swift, Seidman,& Stein, 1967). Recent studies examined many variables, such as age,gender, and socioeconomic status as individual variables, and usually onedependent variable measured child adaptation to chronic illness (Austin,1988; Burns, Green, & Chase, 1986; Chaney et al., 1997; Grey, Cameron,& Thurber, 1991). In addition, recent studies acknowledged both thedirect and indirect relationship between variables that may affect childadaptation to chronic illness.

Recent research reports range from descriptions of demographic char-acteristics in relationship to physiological parameters of a child’s adapta-tion to Type 1 diabetes (Grey & Thurber, 1991; Hanson, Henggeler, &Burghen, 1987a) to multivariate examinations of the complex relation-ships between physiological, psychological, social, individual, and familyadaptation to the diabetic condition in children (Aikens, Wallander, Bell,& Cole, 1992; Hanson et al., 1990). Related concepts, such as coping andadjustment, were studied as intervening variables in adaptation to Type 1diabetes (Hanson et al., 1989).

RISK AND RESISTANCE MODEL

The following model of risk and resistance provides a framework forstudying the complexity of the relationships between child, family, andthe many other variables that influence adaptation in a child with Type 1diabetes. The model was developed after an extensive review of the lit-erature and reflection on my clinical experience of managing Type 1

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Type 1 Diabetes 15

diabetes. The risk and resistance model (Figure 1) identifies risk andresistance variables that may influence child adaptation to chronic illnessor a handicapping condition. The child is the center of the model sincehis or her perceptions are central in understanding resultant adaptation.The model provides a theoretical basis for exploring the nonlinear andnonunidirectionality of the complex concept of child adaptation to chronicillness. The model includes a representation of the relationships betweencomplex interwoven variables that may affect the child’s adaptation.

The stress of illness affects all systems. Stressors related to andbeyond the illness are viewed as risk variables. Positive coping strate-gies, which flow through all systems, provide resistance to stress. Riskvariables identified in the model include gender, age, socioeconomicstatus (SES), development level, lack of social support, duration of

Figure 1. Model of influences on child adaptation to chronic illness.

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illness, and the presence of depression and anxiety. All the risk variablesare interdependent and relate to the resistance variables. Resistance vari-ables, if present, can mediate or buffer the effect of risk on the child’sadaptation to chronic illness. Resistance variables include self perceptionor self esteem, knowledge of disease, and presence of social support.Social ecological variables, which provide resistance to poor adaptation,include family environment, family support, family cohesion and adapt-ability, family knowledge of disease, and normalization (Knafl & Deatrick,1986).

Child adaptation, the center of the framework, should be measured bythe children’s ability to process stress, their cognitive appraisal, copingstrategies and physical, social, and psychological well-being. All the re-sistance variables are intertwined and relate to both the risk variables andthe child adaptation outcomes. The model includes select variables thathave been studied most frequently in the literature, such as family envi-ronment and competence of the child.

The child’s adaptation, the center of the model, is conceptualized in acomprehensive manner to include the mental health, social functioning,and physical health. Outcomes, such as the presence or absence of de-pression, anxiety, level of self-worth and physical health, are influencedby the variables of social ecology of the child’s environment, copingstrategies, and cognitive appraisal by the child. The child must not beviewed in isolation since there are complex systems operating that areincluded in the conceptual model. Also, adaptation may change over time.Examples of risk variables, resistance variables, and outcome variablesare included in Table 1. More extensive discussion of risk and resistancevariables and outcome measures follows.

Table 1. Risk and resistance variables in type 1 diabetes

Concepts Examples Measures

Risk variables Stressors related to child Age (adolescence), SES, poorfamily cohesion

Resistance variables Positive coping strategies Ventilation of frustrationFamily support and Family cohesion instrument

communication

Outcome variables Psychological well-being Positive self-perceptionPhysical well-being Glycosylated hemoglobinSocial well-being Child behavior checklist

(Achenbach & Edelbrock, 1983)

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Type 1 Diabetes 17

DEFINITIONS OF CONCEPTS

The following definitions were developed in conjunction with the theo-retical framework. The concepts were developed and defined to clarifythe relationships between concepts and the primary focus of the frame-work, child adaptation.

Stress Processing

The definition of stress for the conceptual model is adapted from Lazarusand Folkman (1984), who define it as a perception of threat that is ap-praised by the child as taxing or exceeding his or her resources andendangering well-being. The stress of Type 1 diabetes provides a stimu-lus that requires the child to respond through the process of coping. Thecoping appraisal of the stress and the individual’s response is the firststep toward the outcome of adaptation to the illness. To maintain health,the child with Type 1 diabetes must adhere to medical regimens and alsoachieve adequate psychological adaptation that Wallander, Varni, Babani,Banis, and Wilcox (1989) termed “stable person variables.”

Coping

Coping is the cognitive and behavioral effort to manage specific externalor internal demands that are appraised as taxing or exceeding the re-sources of the person (Lazarus & Folkman, 1984). In the model (Figure1), coping in children involves a positive response that buffers stress anddecreases the threat to their well-being. Coping strategies, representedas flowing through the risk and resistance variables, are influenced bymany independent variables. These include age and gender (Grey, Came-ron, & Thurber, 1991); developmental stage, duration and type of illness,stress, family cohesion, and age (Hanson et al., 1989); and the child’sresponsibilities related to the illness and past coping strategies or re-sources (Kager & Holden, 1992). The sociocultural environment, pri-marily the family environment, also influences coping ability (Kovacs,Brent, Steinberg, Paulauskas, & Reid, 1986). Other environmental vari-ables that influence coping include family composition, cohesion, andadaptability (Grey & Thurber, 1991; Hanson et al., 1990; Pollack, 1986;Wallander et al., 1989). Development of coping strategies related to Type1 diabetes and life in general is in part a function of the cognitive level ofthe child (Newbrough, Simpkins, & Maurer, 1985).

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Compliance and Adherence

The two terms, compliance and adherence, have been used by differentresearchers, but with similar meanings. In psychology and nursing litera-ture, the term adherence has been used more frequently. Most researchersmeasure child adaptation through assessments of the child’s complianceor adherence.

Compliance has been defined as the ability to conform consistently tothe prescribed medical regimen dictated by the physician (Sackett, 1976).In contrast, adherence has been defined as the patient’s ability to remainfaithful to the required self care activities to maintain health (physiologi-cal and psychological) within the constraints of the chronic illness (Schafer,Glasgow, McCaul, & Dreher, 1983).

The main difference between adherence and compliance is who makesdecisions about the treatment and management of care that affects thehealth of the person. When decisions regarding treatment regimen aremade by the health care provider alone, compliance should be used. Incontrast, when the patient and family participate in health decisions ad-herence is a more appropriate term (Random House Dictionary, 1987;J. Brewer, personal communication, August, 1993). Collaborative man-agement is a more recent term recognizing the collaborative spirit of caremanagement (Trostle, 1998).

Despite the limitations of self reports of adherence, investigators haveevaluated adherence to the self-care regimen by using a variety of self-report measures (Drotar, 1997). Aikens et al. (1992) suggested there maybe higher construct validity in measuring adherence by self-report thanpreviously reported. Overall physical health measures and functional abilityin the child with Type 1 diabetes have been overlooked due to a singularfocus on blood glucose control. Glycemic control primarily has beenstudied as a dependent variable, whereas adherence behavior self-reportshave been treated as either a dependent or independent variable. Thus,adherence can be demonstrated by the outcome of glycemic control, adependent variable, or self-reports of adherence behavior can be exam-ined as independent variables to predict glycemic control as an outcomemeasure (Newbrough, Simpkins, & Maurer, 1985). In addition, the psy-chological and social well being of the child should be included. Hence,child adaptation should be measured with multiple measures of adher-ence, well-being, child’s health, and self-perception.

Adjustment

Adjustment and adaptation are frequently used interchangeably inthe literature. The term adjustment conveys a more temporary stateof response to the stress of childhood Type 1 diabetes than the term

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Type 1 Diabetes 19

adaptation (Jacobson et al., 1990). Adjustment, as defined by Jacobson etal. (1990) refers to the alterations the child makes to respond to a set ofimmediate external demands. The adjustment measures used by Jacobsonet al. (1990) included self-perceptions of emotional state (esteem), psy-chological symptoms or behavioral problems, competency in school, andsocial behavior. These measures were similar to those used by other in-vestigators to indicate adaptation.

Adaptation

Adaptation is the primary concept in this framework (Figure 1). In lightof the plurality of terms and definitions that appear in the literature,adaptation needs to be put into context. Individual adaptation to Type 1diabetes incorporates both the temporary adjustment and coping strate-gies used to manage the demands of the illness and, more important, thepsychological coming to terms with the reality of the long-term implica-tions of having Type 1 diabetes. Thus, it can be conceptualized that adap-tation = adjustment + coming to terms with the implications of diabetes.Thus, investigators who measure adjustment were measuring only part ofadaptation.

The definition of adaptation to diabetes in children used in the frame-work is “the ability to produce an outcome, such as adherence, thatrelates to successful identification of strategies that assist with managingand coping with the illness and mastery of the social and physical en-vironment.” This mastery of the environment is evidenced by the abilityto adhere to the medical demands of the illness and the ability to achieveoptimal health psychologically, physically, and socially. Additional out-comes may include positive self-perception, and no signs of anxiety,depression, or behavioral problems. Conversely, children who are adjust-ing to warm weather and increased activity, managing the flu, or prepar-ing to participate in soccer season make the necessary responses on atemporary basis. Hence, adaptation represents a longer term outcome thanadjustment.

Poorly adapted children are those who do not demonstrate the masteryof their physical, social, and psychological environments. Such childrenmay miss many school days, have frequent admissions to the hospital,possess limited coping abilities, or have poor self-perception.

Adaptation to Type 1 diabetes in children was primarily studied fromthe perspective of the child’s parent or caregiver’s perceptions of howthe child has adapted (Aikens et al., 1992; Kager & Holden, 1992). Nostudies were located that provided a comprehensive child’s view of his orher adaptation to Type 1 diabetes. A clearer picture of the child withType 1 diabetes needs to be elicited. Without information about the

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child’s perception of Type 1 diabetes, knowledge about the child’s adap-tation will not be complete. This picture should include the child’s selfperception related to school, home, friends, health, and how he or sheperceives and manages the Type 1 diabetes.

Relationship among Concepts

The concepts of stress, coping, risk and resistance, adjustment, and adap-tation are related as follows. The stress of Type 1 diabetes is a riskvariable that evokes coping behaviors within the child. The coping be-haviors the child enlists are part of the process of coping and adjustingto Type 1 diabetes. The way in which the child copes and adjusts isinfluenced by a variety of risk and resistance variables and leads to theultimate outcome of adaptation to Type 1 diabetes.

The environment in which the child exists is constantly changing, bothinternally (within the child) and externally (outside the child). The envi-ronmental components influencing adaptation include cultural, family,growth, and development variables (Roy, 1984). In addition, Roy (1984)describes the person’s opportunity to continue to grow and develop inresponse to the changing environment and enhance the meaning of lifefor self and others with the goal being adaptation and health.

A primary risk variable that children with Type 1 diabetes encounter(Wallander et al. 1989) is psychosocial stress related to the daily man-agement of Type 1 diabetes. Children’s perception of stress related toType 1 diabetes and the effect of stress on adaptation to Type 1 diabeteshave not been explored in the research. The risk variables in the modelwere chosen based on the strength of the relationship with child adapta-tion to Type 1 diabetes in literature reviewed. Certain variables consis-tently surfaced as significant predictors of child adaptation to Type 1diabetes in studies reviewed. The identified risk variables that predictedchild adaptation to Type 1 diabetes were multiple and complex, rangingfrom sociodemographic and developmental variables to disease charac-teristics. The culmination of identified risk and resistance variables is themeasure of child adaptation.

MEASURES OF CHILD ADAPTATIONTO TYPE 1 DIABETES

Measuring adaptation to childhood Type 1 diabetes is a complicated task.Children adapting to Type 1 diabetes exist in a multilayered environmentof family, school, and neighborhood. The multilayered environment pairedwith the chronic illness presents complex psychological, social, and physio-logical demands on the child. The child’s ability to respond to the de-mands of the chronic illness is influenced by the child’s own attributes,

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Type 1 Diabetes 21

the family, and the social and cultural systems in which the child exists.Measuring the many interwoven variables and the relationship betweenthe variables that directly or indirectly influence the child’s adaptationpresent researchers with a significant challenge.

As the scope of measures of adaptation is quite wide, the conceptualframework was designed to propose relationships between the risk andresistance variables and the child’s adaptation. The child’s adaptationshould be viewed in the context of physiological, psychological and so-cial adaptation to the illness.

Even though certain variables, such as the family environment, appearto directly affect the child’s adaptation to Type 1 diabetes, the studiesreviewed in a recent meta-analysis included few self-reports of the child’sperception of adaptation, few comparisons of raters (child vs. parents vs.teachers), and contradictory and unclear information (Lavigne & Faier-Routman, 1992). Measures of adaptation to Type 1 diabetes includedestimates of the child’s overall psychological adjustment, broad internal-izing symptoms such as anxiety and depression, externalizing symptomssuch as hyperactivity or aggressive behavior and, last, estimates of childself-concept or self-esteem (Lavigne & Faier-Routman, 1992). Even thoughthese studies have contributed to the research on child adaptation, the fullprofile is not complete.

A variety of physiological, psychological, and social measures of childadaptation was explored in the studies reviewed. The primary physicalhealth, or physiological measures were glycosylated hemoglobin and ad-herence in children with Type 1 diabetes. The main psychological con-cepts explored in a variety of chronic illnesses included pathologicalbehavior, mental and social well-being, perceived competency, depres-sion, and anxiety. The social concepts measured included behavior andsocial competency (CBCL), coping skills, coping efficacy, and learnedresourcefulness. Construct validity of these concepts and the reliabilityand validity of the instruments used to measure the concepts were dis-cussed in most cases.

The majority of studies used descriptive correlational data analysisand were exploratory in nature (Charron-Prochownik, Becker, Brown,Liang, & Bennett, 1993; Grey et al., 1991; Hanson et al., 1989). Agegroups ranged from 7 to 20 years in studies of children with Type 1diabetes (Hanson, Henggeler, & Burghen, 1987b; Saucier & Clark, 1993;Swift, Seidman, & Stein, 1967; Waller et al., 1986) and ages ranged frominfancy through 16 years in surveys exploring several chronic illnesses(Athreya & McCormick, 1987; Cadman, Boyle, Szatmari, & Offord, 1987).Comparing adaptation in children with diabetes of different ages isdifficult since puberty and rebellious behavior in adolescence are difficultto control as intervening variables. Most investigators classify age in

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children according to pre-school, school age, and adolescent years. Theideal would be to have a standard for investigators to use for categorizingages of children.

Children have not played an active role in describing their perceptionsof adaptation to chronic illness. Lavigne and Faier-Routman (1992), in ameta-analysis on 87 studies of adjustment of children ages 3–19 years tophysical disorders, noted discrepancies in reporting of adjustment be-tween teachers, mental health professionals, and parents. The self-reportsof self-concept of children with physical disorders across all studies inthe meta-analysis (n = 87) were significantly lower than healthy children.Clearly, more information needs to be elicited from children directly re-garding their adaptation to chronic illness. This area of research shouldbe a priority for pediatric nurses.

SUMMARY

This conceptual model provides a framework for future study of childadaptation to Type 1 diabetes. Concepts of adaptation, adjustment, stress,and coping have been clarified and the relationships between concepts isarticulated in this article and represented through the model. As Fawcett(1993) states, “Conceptual models act as guides for theory develop-ment. By focusing attention on certain concepts and their relationships,they place the concepts and their relationships in a distinctive context”(p. 20).

Future research should focus on testing this model. Studies shouldinclude the child’s perspective of the perceived stress of illness, coping,and the relationship between the child and the social ecological environ-ment in which the child exists. Last, the adaptation of the child should bemeasured in a comprehensive manner including psychological, social,and physiological adaptation.

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