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1 RELATIONSHIP BETWEEN SUBJECTIVE ILLN ESS SEVERITY AND SELF CONCEPT IN CHILDREN WITH SICKLE CELL DISEASE By SHALONDA K. SLATER A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL OF THE UNIVERSITY OF FLOR IDA IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY UNIVERSITY OF FLORIDA 2007
2 2007 Shalonda K. Slater
3 To my family for all of their love an d support throughout this challenging journey.
4 ACKNOWLEDGMENTS I would like to thank my supervisory comm ittee chair (Eileen Fennell) for her support and mentorship. I would like to thank the Center for Pediatric Psychology and Family Studies at the University of Florida and the Division of Be havioral Medicine and Clinical Psychology at Cincinnati Childrens Hospital Me dical Center for funding this re search. Lastly, I would like to thank my family and friends for their support.
5 TABLE OF CONTENTS page ACKNOWLEDGMENTS...............................................................................................................4 LIST OF TABLES................................................................................................................. ..........7 LIST OF FIGURES................................................................................................................ .........8 ABSTRACT....................................................................................................................... ..............9 CHAPTER 1 INTRODUCTION..................................................................................................................11 Background and Significance.................................................................................................12 Two Models of Psychological Adjustment.............................................................................15 Illness Severity and Adjustment.............................................................................................19 Multiple In formants............................................................................................................ ....21 Self Concept in Children with Sickle Cell Disease................................................................22 Coping and Adjustment..........................................................................................................26 Self Concept in Adolescence..................................................................................................28 Study Aims..................................................................................................................... ........29 2 METHODS........................................................................................................................ .....32 Participants................................................................................................................... ..........32 Procedure...................................................................................................................... ..........33 Measures....................................................................................................................... ..........34 Demographic Information Form......................................................................................34 Wechsler Individual Achievement Test -Second Edition (WIAT-II Abbreviated)..........34 Multidimensional Self Concept Scale (MSCS)...............................................................35 Illness Severity Questionnaire.........................................................................................35 Kidcope........................................................................................................................ ....35 Statistical Analyses........................................................................................................... ......37 3 RESULTS........................................................................................................................ .......40 Comparison of Sample and Normative Standard Scores on MSCS.......................................40 Correlation between Per ceived Illness Severity and Self Concept.........................................40 Objective Measures of Illness Severity and Self Concept......................................................41 Differing Perceptions of Illness Severity................................................................................41 Use of Coping Strategies....................................................................................................... .42 Coping as a Mediator........................................................................................................... ...42 Developmental Differences in Self Concept..........................................................................43 4 DISCUSSION..................................................................................................................... ....56
6 APPENDIX A DEMOGRAPHIC INFORMATION QUESTIONNAIRE.....................................................62 B WIAT-II ABBREVIATED WORD READING SUBSCALE...............................................64 C MULTIDIMENSIONAL SELF CONCEPT SCALE.............................................................65 D SICKLE CELL QUESTIONNAIRE-CHILD.........................................................................73 E SICKLE CELL QUESTIONNAIRE-PARENT.....................................................................74 F SICKLE CELL QUESTIONN AIRE-PHYSICIAN...............................................................75 G KIDCOPE QUESTIONNAIRE..............................................................................................76 LIST OF REFERENCES............................................................................................................. ..80 BIOGRAPHICAL SKETCH.........................................................................................................86
7 LIST OF TABLES Table page 2-1 Demographic characteristics of pa rents and children with SCD (n=40)...........................39 3-1 Rankings for efficacy of illness coping strategies.............................................................44 3-2 Rankings for efficacy of common coping strategies..........................................................45 3-3 Illness related Kidcope frequency rankings.......................................................................46 3-4 Common problem Kidc ope frequency rankings................................................................47 3-5 Differences in ratings of self concept by developmental period........................................48
8 LIST OF FIGURES Figure page 3-1 Standard score means for the Social, Academic, and Physical subscales of the MSCS........................................................................................................................... .....49 32 Percentages of particip ant self concept classificati ons corresponding to standard score ranges on MSCS-social subscale (N = 40)...............................................................50 3-3 Percentages of participan t self concept classifications corresponding to standard score ranges on MSCS-academic subscale (N = 39).........................................................51 34 Percentages of particip ant self concept classificati ons corresponding to standard score ranges on MSCS-physical subscale (N = 39)...........................................................52 3-5 Distribution of data for pare nt ratings of illness severity..................................................53 3-6 Distribution of data for ch ild ratings of illness severity....................................................54 3-7 Distribution of data for physic ian ratings of illness severity.............................................55
9 Abstract of Dissertation Pres ented to the Graduate School of the University of Florida in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy RELATIONSHIP BETWEEN SUBJECTIVE ILLN ESS SEVERITY AND SELF CONCEPT IN CHILDREN WITH SICKLE CELL DISEASE By Shalonda K. Slater August 2007 Chair: Eileen Fennell Major: Clinical and Health Psychology Over four million children in the United States are living with a chronic illness that limits activity and this can negatively impact families and children. Early research concluded that children with a chronic health condition experience problematic ad justment while more recent studies have suggested that psyc hological adjustment is more va riable. Children with sickle cell disease (SCD) experience a number of disease related complications that may affect the development of a healthy self-concept. Aims of the study were to 1) Evaluate the relationship between subjective illness severity and the se lf-concept of children with SCD within a developmental context. 2) Explore discrepancie s in perceived illness severity among different raters (child, parent, and physic ian). 3) Determine the contribu tion of coping style to reported self-concept. Participants included 40 children with SCD and their prim ary caregiver recruited from two outpatient pediatric sickle cell clinics. Participants completed demographic, subjective illness severity, coping, and self-concept measures Results indicated that child perception of illness severity was not related to self concept, r = .08, p = ns. Children rated their illness as less severe ( M = 41.2, SD = 27.7) than parents ( M = 59.8, SD = 30.2) and physicians ( M = 54.5, SD = 26.8). Adolescents rated their self concept in the social domain as significantly higher than did younger children t (38) = -2.18, p = .04. Coping did not mediat e the relationship between
10 perceived illness severity and self concept. Thus, it appears that perception of illness severity does not play a significant part in self concept for children with SCD and is not a central factor in psychosocial models of child adjustment.
11 CHAPTER 1 INTRODUCTION Research suggests that an estimated 18% of chil dren have a serious illn ess that affects their daily functioning, with chronic illness compri sing 6% of this population (Newacheck, McManus, Fox, Hung, & Halfon, 2000). Because of advances in treatment for pediatric chronic illnesses, children with conditions such as cystic fibrosis cancer, and sickle ce ll disease (SCD) now live into adulthood (Newacheck & St oddard, 1994). As such, treatment has shifted from a primary focus on management of symptoms in chil dhood to also ensuring a normal developmental trajectory into adulthood. Families caring for a ch ild with a chronic condition often confront hardships (i.e., changes in marital relationship, si bling relationships, and financial concerns) and the chronically ill child especi ally deals with daily challenges (Lee, Phoenix, Brown, & Jackson, 1997; Quittner et al., 1998; Thompson, Gustaf son, Gil, Kinney, & Spock, 1999). As documented in the literature, issues that children with a ch ronic illness, such as SCD, face include difficulties with the development of healthy self esteem mood, behavior, adhere nce, and intellectual functioning (Palmero, Schwartz, Drotar, & Mc Gowan, 2002; Thompson et al., 2003; Yang, Cepeda, Price, Shah, & Mankad, 1994). Children with a chronic illness may be at an increased risk for adjustment problems that affect their daily functioning (Thompson et al ., 1994; Thompson et al., 1999). Early studies reported high rates of anxiety a nd depression for children with SCD, cystic fibrosis, and diabetes (Yang, Cepeda, Price, Shah, & Mankad, 1994), while more recent research has suggested that there are few differences between the emotional we ll being of children with chronic illnesses and healthy children (Brown, Armstrong, & Eckm an, 1993; Grey, 1992; Thompson & Gustafson, 1996). Potential explanations for these disparate findings in clude advances in research methodology, improvements in medical treatmen t, better psychological adjustment, and
12 advancement in the understanding of chr onic illness in childhood and its impact on psychological functioning. Although children living with a chronic illness may be at an increased risk for poor adjustment (Morgan & Jackson, 1986), evidence has not supported the notion of uniform maladjustment (Noll et al., 1996; Thompson, G il, Godfrey, & Murphy, 1998). Adjustment of families and children with chronic illnesses ma y vary by condition and coping resources of a family and child (Gil, Williams, Thompson, & Kinney, 1991; Kell, Kllewer, Erickson, & OheneFrempong, 1998). The hassles experienced by parents of children with CF (i.e. calorie counting and adherence to a rigorous medical regimen) di ffer from the difficulties encountered by families of children with sickle cell dis ease (i.e., pain episode s, physical limitations) and as a result, patterns of psychological adjustment differ (Thomps on et al., 1998). Research ers in the field of Pediatric Psychology now consider the framework of psychological adjustment to chronic illness to be more complex than previously thought. Si ckle cell disease is a chronic condition that presents unique challenges for children and famili es, yet this vulnerable population has received relatively little attention in research. Background and Significance Sickle cell disease (SCD) is a chronic illness that aff ects approximately 50,000 AfricanAmericans in the United States. SCD refers to a group of genetic disord ers that result from defects in normal hemoglobin production. Sickle cell anemia (SS), hemoglobin SC disease, and sickle thalassemia are the three major forms of the di sease. "Sickle" refers to the shape of altered red blood cells, which are normally disc-shape d (Kell, Kliewer, Erickson, & Ohene-Frempong, 1998). The sickle-shaped cells interrupt blood fl ow to tissues by blocking blood vessels. Without the oxygen being carried in red blood cells, damage occurs to organs and pain results (Kell et al., 1998). The life of sickled red cells is onl y about 10 to 20 days, while normal red
13 blood cells live 120 days in the bloodstream. Anemia results because blood is chronically short of red blood cells and they cannot be replaced quickly enough. SCD is ch aracterized by pain and chronic anemia (Ashley-Koch, Yang, & Olney, 2000). In the United States, African Americans repr esent the largest populat ion affected; however, sickle cell disease is not only mani fested in individuals of African descent but also by individuals in the Middle East, Southern Europe, Central an d South America, and Asia (Serjeant, 1989). Sickle cell genotypes are distinguished by the type of mutation on th e hemoglobin gene and generally by the severi ty of the symptoms. The normal hemoglobin genotypes are designated AA. Those with SS genotype of sickle cell dise ase received the abnormal sickle cell gene from both parents and have the highest amount of "sickl ed" red blood cells often resulting in the report of the most severe complicati ons (Holbrook & Phillips, 1994). Hemoglobin SC and sickle thalassemia are associated with varying levels of sickle-shaped red blood cells, resulting in sympomatology ranging from a moderate to seve re course (Holbrook & Phillips, 1994). Major complications in childhood that can result from sickle cell disease are: anemia, stroke, brain damage, hand-foot syndrome (swelling in hands a nd feet due to blockages in small red blood vessels), acute chest syndrome, increased infect ions, leg ulcers, growth delays, priapism, and pain crises (Smith, 1989). Early diagnosis of SCD has resulted in better treatment of complications in early childhood with a majority of states performing SC D blood testing at birth (Holbrook & Phillips, 1994). Pain crisis or a vaso-occlusive episode ( VOE) is a prominent symptom of sickle cell disease and refers to the process in which blood flow is affected by the sickling of the red blood cells (Holbrook & Phillips, 1994). The cells are sticky, rigid instea d of doughnut-shaped and smooth, and easily stick to the lin ing of the vessels and to othe r cells resulting in obstructed
14 blood flow (Holbrook & Phillips, 1994). The seve rity of a pain episode depends on the amount of blockage that has occurred within the blood vessels (Conner-W arren, 1996). Pain episodes can be described as unpredictable and varying in inte nsity from mild, moderate and severe pain in joints or organs (Broome, Maikler, Kelber Bailey, & Lea, 2001). Though the majority of children with SCD experience pain crises, the fr equency with which pain episodes occur varies greatly (Gil, Williams, Thompson, & Kinney, 1991). Some children with SCD experience frequent hospitalizations and severe pain episodes, while others have relatively few complications related to their illness in childhood. Sickle cell disease complications in childhood can result in a major disruption in daily activities such as school attendanc e and social interaction with other children (Gil et al., 2003). A number of researcher s have found evidence that the presence of pain episodes can negatively impact the adjustment of childre n with SCD (Broome et al., 2001; Gil et al., 2003). Although subjective illness indicators such as pa in experiences have been associated with poor adjustment, objective measures of disease se verity (i.e., hemoglobin levels, frequency of ER visits, SCD subtype) have not been linked to adjustment for children with SCD (Burlew, Telfair, Colangelo, & Wright, 2000; Hurtig, Koepke, & Park, 1989; Kell et al., 1998). The central purpose of this study is to examine subj ective illness severity as rated by children with SCD, their parents, and SCD physician and to evaluate the relationship between childrens perceptions and their ra ting of self-concept. Differences in the occurrence and severity of SCD symptoms in children are mirrored in the significant variability in the psychological ad justment of children with SCD. Research has shown that some children progress toward a dulthood without much interruption while other children experience significant disruption across a number of domains. Some children with SCD
15 have adjustment difficulties, including poor self-concept, depressi on, anxiety, behavior problems, impaired peer interactions, repeated absences from school, and learning difficulties (Hurtig, Koepke, & Park, 1989; Lemanek, Moor e, Gresham, Williamson, & Kelley, 1986; Morgan & Jackson, 1986; Walco & Dampier, 1990). Thus, the focus of recent research has been the identification of factors that account for differences in adjustment (Hocking & Lochman, 2005; Thompson et al., 2003). Several psychosocial models have been postulated to account for the considerable amount of variability in psychos ocial adjustment of ch ildren with sickle cell disease. Two Models of Psychological Adjustment One such model of adjustment for childhood chr onic illness is the Disability-Stress-Coping Model put forth by Wallander and Venters (1995). Within this model, risk (disease parameters, functional independence, psychosoc ial stress) and resistance f actors (interpersonal, socialecological dimensions) predict both parent and child adjustment to chronic illness. Social and academic competences, as well as self-esteem are included as representatives of interpersonal resistance factors. Family environment and family adaptation represent social-ecological dimensions within this model (B rown et al., 2000). Resistance fa ctors serve as a protection for families against problematic adjustment while factor s such as functional limitations of an illness place a family at risk for poor adjustment. S upport has been found for the models use with families of children with a disability or serious illness (e.g., cancer, cystic, fibrosis, cerebral palsy). For example, a prospective study assessin g the modifiable influences of family on the psychological adjustment of children recently dia gnosed with cancer found that family cohesion and expressiveness most consistently predic ted child adjustment over a 9-month period following diagnosis (Varni, Katz, Colegrove, & Dolgin, 1996). In this study, the family functioning dimension of the risk-resistance mode l was the focus of measurement. Because of
16 this measurement approach, the study was limited in its ability to assess the relative contribution of other dimensions, such as dise ase parameters, within the model. Researchers have also used this theoretical model to predict child adjustment to SCD, though few have measured the contributions of each proposed dimension within one study. Brown and colleagues (2000) conducted one such comprehensive evaluation of Wallanders model by examining factors that predict adjustme nt in children with SC D and their caregivers. Parent and child adjustment, risk factors (i.e ., disease parameters, ps ychosocial stressors), resistance factors (i.e., intrapersonal health lo cus of control, social-ecological), and stress processing factors (coping) were all assessed in the study. Walla nders risk-resistance model accounted for a significant amount of variance in child adjustment with child internal health locus of control (feelings of control over illness) accounti ng for a 22% of variance in externalizing behavior problem scores. It should be noted that objectiv e measures of disease severity were not linked to ad justment, though child functional i ndependence (ability to function in daily living activities) was strongly correlated with child adjustment (Brown et al.). Thus, subjective rating parameters, incl uding control and functional abil ity were more closely related to adjustment than objective il lness parameters. One goal of th e current study is to evaluate whether a more subjective measure of illness severity is more closely related to adjustment than an objective measure of illness severity. Another study that included of both biom edical and psychosocial factors within a theoretical model evaluated the added contribu tions of family variables to psychological adjustment in adolescence (Kell et al., 1998). Researchers found that family competence was associated with fewer behavior problems in adolescents with SCD when demographic and medical variables were controlled statis tically. Medical variables (i.e., type of
17 hemoglobinopathy, health care utilization, pres ence of stroke) also accounted for some variability (10-15%) in reported behavior pr oblems when demogra phic variables were controlled. These findings suggest that, although family functioning is an important factor in predicting adjustment, medical variables may also account for some variability in adjustment. Research to further evaluate the contribution of illness-rela ted variables to psychological adjustment would help clarify the relationshi p between illness parameters and adjustment. The transactional stress and coping model has also been employed as a theoretical framework for conceptualizing ad justment to chronic illness (T hompson, Gil, Burbach, Keith, & Kinney, 1993). Similar to Wallanders model, the tr ansaction stress and coping model considers chronic illness a stressor and adaptation to this stressor va ries according to biomedical, developmental, and psychosocial processe s (Thompson & Gustafson, 1996). Thus, these processes potentially affect the relationship between illness and adaptation. One difference between the two theoretical models is the risk resistance model reflects a more generalized approach to the study of psychol ogical adjustment in children w ith a chronic condition and is thus considered non-categorical A non-categorical model assume s that illnesses share more commonalities than differences and that dimens ions of adjustment are similar across illness populations (Garstein, Short, Va nnatta, & Noll, 1999). Conversel y, the transactional stress and coping model is a modified categorical model and emphasizes the unique contributions of a specific illness along with general parameters (e.g., demographic factors) (Garstein, Short, Vannatta, & Noll, 1999). Within the transactional stre ss and coping model, the illnes s-adjustment relationship is viewed as a function of the transactions of illness parameters, demographic parameters, and adaptational processes (Thompson et al., 1998). The model includes illness parameters (type,
18 severity, age of onset), demographic parameters (patient age, gender, SES), mediators (cognitive processes of stress appraisal), health locus of control, self esteem, and coping methods (Thompson et al.). The theory suggests that th e pattern of interrelationships between illness variables, mediators, and adjustment varies with illness. A study conducted by Thompson and colleagues evaluated the differential patterns of adjustment for families of children with sickle cell disease and cystic fibrosis. They found dis tinct patterns of adjustment and adaptational processes for each group. For children with cystic fibrosis, stress appraisal accounted for the most variance (19%) in adjustment followed by exp ectations of efficacy (9 %) and health locus of control (9%). However, for children with SCD, stress appraisal (21%) and self-worth (12%) accounted for significant variance in adjustment for children. Both the risk resistance model and transact ional stress and coping model postulate that multiple factors (psychosocial and medical) are associated with psychological adjustment. Despite the progress made in iden tifying predictors of adjustment the relative contributions of demographic (e.g., age), illness-related (e.g., disease severity), and psychosocial factors has not been established. The contribution of illness-related variables to models of adjustment remains unclear, as a majority of research ers have found little support for the significance of this factor to adjustment within either model (Brown et al., 2000; Thompson et al., 1999). One explanation for this uncertainty may be the large number of va riables within the theoretical models, which has made inclusion of multiple predictor variables di fficult. Poor adjustment has been associated with a number of negative health outcomes, in cluding poor adherence to medical regimens, declines in physical functioning, and freque nt hospitalizations (Brand, Johnson, & Johnson, 1986; Porter et al., 1998; Gil et al., 2003). In orde r to effectively combat these negative health consequences, it is imperative to improve the adjustment of children with chronic illnesses,
19 including SCD, by identifying t hose factors that impact psyc hological functioning and can be targeted in interventions. The current study se eks to determine whethe r a subjective illness indicator such as percepti on of illness severity sh ould be included in future evaluations of factors contributing to the adjustment of children with SCD. Illness Severity and Adjustment As noted, markers of illness in SCD such as a childs experience of pa in contribute to the variability in child adjustme nt (Gil et al., 1993). Yet the ove rall contribution of objective measures of disease severity have accounted for only a small portion of the variability in adjustment in comparison to psychosocial fa ctors (Brown et al., 2000; Burlew, Telfair, Colangelo, & Wright, 2000; Thompson et al., 19 99). For children with SCD, conception of illness may be influenced not just by the occurrence of complications but also by their perception of the severity of their diseaserelated complications. An aim of the current study is provide more information about childrens own per ceptions of their illness severity. Hurtig, Koepke, and Park (1989) conducted one of the first studies that evaluated the contribution of disease severity to psychologi cal adjustment in children with SCD. They hypothesized that illness severity as represented by frequency of hospitalization and ER visits, frequency and intensity of pain episodes, and illness duration would be associated with adjustment variables that included self esteem and peer relations. The results of the study failed to support the importance of a c onnection between objective illness indicators and self esteem and other measures of psychological adjustment. They concluded that factors such as age and gender were more closely linked to ad justment than illness severity. While objective measures of illness severity have not been correlated with child adjustment to chronic illness, subjective reports of health status have not been included in evaluations of factors within models of adjustme nt (Kell et al., 1998). Assessment of models such as the risk
20 resistance model of adjustment have instead fo cused on the contributions of factors such as objective illness severity markers, family contri butions, social support and parent adjustment and coping style to the adjustment of children with SCD (Brown et al., 2000; Burlew et al., 2000; Kell et al., 1998; Thompson et al., 1999). Within these adjustment m odels, objective illness severity markers most often defined as frequenc y of hospitalizations, hemoglobin level, and pain crisis rate have consistently had little rela tionship to child report s of internalizing and externalizing behavior problems and self este em (Burlew et al.; Kell et al., 1998). Although subjective illne ss severity has received less a ttention in the literature than objective measures of illness severity, the impact of pain crises on children with SCD has been examined. Pain ratings have been the primary re presentative of subjective disease severity in research and a strong relationship has consis tently been found between pain ratings and adjustment. Gil and colleagues (2003) have us ed pain ratings give n by children with SCD experiencing pain crises to determine the extent to which this subjective rating of illness severity was related to measures of psyc hological adjustment. They found that same day increases in pain rates were associated with incr eased stress and negative mood. In one of the first studies focusing on global su bjective indicators of SCD illness severity and not solely on pain ratings, Connelly and co lleagues (2005) recently evaluated the amount of agreement among raters of illness severity. This study evaluated differing perceptions of illness severity among children with SCD, their pa rents, and physician. They found significant differences in perceptions with children rating th eir own illness as less severe than parents and physicians. In addition, parents ratings appeared to be influenced by their own psychological adjustment. Physicians ratings were most cl osely associated with medical indices. Thus, although subjective illness ratings have not been the focus of many studies involving children
21 with SCD, a childs own perception of illness seve rity represents a unique perspective and may provide useful information about the contribution of illness severity to indices of psychological adjustment. The current study evaluates the cont ribution of ratings of illness severity from multiple informants, including children, parents, and physicians to ratings of self concept. Multiple Informants Another association examined in the current study is the relationshi p between parent and child reports of illness severity. Particularly in medical settings, parents are often asked to provide information about their childs medical stat us so it is important to insure that parent report of a childs functioning is an accurate portrayal. Althou gh parents can provide useful information about the impact of an illness on th eir child, many researcher s now consider that a child has a valid view and potentially different perception of their own i llness (Eiser, & Morse, 2001). In general, parents perceive an illness to have more negative consequences than do children themselves (Palmero, Schwartz, Dr otar, & McGowan, 2002). Pa rents provide more accurate information for observable functioni ng than for non-observable functions (e.g., emotional functioning) (Achenbach, McConaughy, & Howell, 1987; Eiser, & Morse, 2001). Past research has indicated that parents and child ren produce similar ratings of SCD pain and concluded that pain can be reli ably assessed through self-report and parent report (Gil et al., 1991). However, there have been few systema tic studies evaluating the relationship between parent and child agreement in ratings of non-obser vable functions such as perception of illness. The current study seeks to provide more detail ed information about the relationship between illness perceptions of a parent and child with SCD. Another important aim of the current study is to explore the cont ributions of physician perceptions to patient health-re lated and psychological outcomes. Physicians play an important role in conveying information about illness a nd treatment. However, few studies assessing the
22 adjustment of children have included a measure of physician perception of illness. One study that addressed physician perceptions, explored the imp act of childrens past sickle cell history on pain ratings of physicians and nurses (Armst rong, Pegelow, Gonzalez, & Martinez, 1992). Results of the study indicated that physicians were not affected by past hi story of hospitalization and made medication decisions based on adequacy of analgesic effect. Nurses in the study were somewhat influenced by hospitaliz ation history. Thus, it may be in ferred that physicians have a relatively objective perception of illness severity. The current study will examine the possible differences in perceptions of illness between physicians and families. A point of intervention may be to ensure a high level of communication between medical teams and families of children with sickle cell disease regarding disease sever ity, pain, and functional limitations. The current study aims to contribute information that can f acilitate better communica tion between parents, children, and medical professionals. Self Concept in Children with Sickle Cell Disease Self-concept is considered a central con cept in child personality development and describes a childs belief about him or hersel f (Bracken, 1992). In addition, self-concept can be thought to include perceptions a bout how a child is perceived by others (Bracken, 1992). Selfconcept also refers to the generalizations that a child makes about ab ilities, limitations and general self worth. Altho ugh the terms self-concept, self-estee m, and self-worth are often used interchangeably in the literature, their definitions for this study are considered empirically and conceptually distinct. Self-concept is an all-en compassing view of self while self-esteem and self-worth refer to evaluative aspects of se lf (Butler & Gasson, 2005). A positive self-concept conveys an acceptance of personal strengths an d weaknesses. Conversely, a negative selfconcept implies feelings of worthlessness and a lack of self respect (Bracken, 1992). Early theories of self concept development considered self concept to be unidimensional (Butler &
23 Gasson, 2005). More recent theoretical models such as Brackens model of self concept, view self concept as multidimensional and including the following areas: social, competence, affect, physical, academic and family. According to this model, self concept is a learned response pattern formed by past experiences a nd predictive of future experience. For young children, tangible successes and failures at home and school guide the development of self-concept (B racken, 1992). As a child grows older, self-concept becomes more of an abstract concept and its contributo rs more complex (Yan et al., 1999). Measurement of self-concept has been somewhat restricted in research studie s involving child ren younger than eight (Butler & Gasson, 2005). Rese archers have long suggested that children younger than eight have not fully developed an ade quate understanding of perceptions of self (Harter & Pike, 1984). Researchers have since discove red that mental age may be more crucial in understanding concepts related to self, and children with a mental age younger than eight may encounter difficulty understanding the meaning of self-concept (Butle r & Gasson, 2005). Another important consideration in the assessmen t of self-concept in children is the impact of a chronic health condition on self perception. Children with a chronic illness have the added risk of poor adjustment to potentially negativ ely affect the developm ent of a positive selfconcept (Yan et al., 1999). Though studies involving children with physical disorders such as cerebral palsy, arthritis, epileps y have often postulated that ch ildren with a physical limitation necessarily have lower self esteem due to li mitations created by the disorder, research has generally not supported uniform maladjustmen t (Hoare & Mann, 1994; LeBovidge et al., 2003). Compared to a normative sample, children with arthritis have similar expectations about their own self-worth (LeBovidge et al.). A notable finding, however, has been that children with a physical limitation often give lower self concept ra tings on those scales dir ectly related to their
24 specific limitation (King, Shultz, Steel, Gilpin, & Cather, 1993). The curre nt study addresses the question of whether these findi ngs are generalizable to child ren with SCD, specifically measuring whether children with SCD rate thei r self concept lower on scales (i.e., social, academic, physical) on which past research has suggested that some children experience difficulty (Thompson et al., 2003). Aspects of self-concept such as self-esteem and body image are relevant issues for children with SCD, as growth delays have been asso ciated with the illness (Smith, 1989). In addition, children with SCD have a heighten ed risk for infarct and researchers have documented a decline in intellectual and academic functioning for these children over time. It follows that academic difficulties may affect the level of self-belief that a child has in this area. Previous studies have generally concluded that children with SCD have a global selfconcept similar to healthy child ren though though others have repor ted that specific dimensions may be negatively affected (Lemanek, Horwitz & Ohene-Frempong, 1994; Noll, Reiter-Purtill, Vannatta, Gerhardt, & Short, 2007). For example, in comparing the self competence of young children with SCD to that of classroom peers, researchers found that ch ildren with SCD were rated as similar to their peers (Lemanek et al., 1994). Another study conducted by Lee and colleagues (1997) also concluded that children with SCD had some self competencies scores similar to a sibling without SCD. However, they also found that children with SCD did not feel equally competent in all four domains measured (cognitive, social, physi cal, and general selfworth). Children with SCD rated the dimensions of social and physical competence lower than their siblings (Lee, E.J., Phoe nix, D., Brown, W., & Jackson, B.S. 1997). Thus, research suggests children with sickle cell disease may experience specific deficits in self concept on domains related to illness complications.
25 However, a study conducted that assessed phys ical delays, self-esteem, and body image also found little evidence of negative self-perceptions (Cep eda, Allen, Cepeda, & Yang, 2000). While the children with SCD had lower weight and shorter stature than children matched on demographic variables, no signi ficant differences in self-e steem between the groups was suggested (Cepeda et al., 2000). The findings of th is study suggest that i llness limitations do not automatically signal problems with the developmen t of a healthy view of self and that other factors may be influential. A limitation of the study was the lack of subjective illness rating, which may be a more proximal measure of illness experience than independent illness measures (hemoglobin level, weight status). The curren t study will explore whether perceptions about illness limitations are associated with self-concept. Identification of factors related to lower self concept will help guide the formation of interv entions to ensure the development of a positive self concept. Some researchers have begun to move from de scriptive studies involvi ng identification of important factors influencing markers of child ad justment such as self concept to implementing interventions for children expe riencing problematic adjustment. For example, researchers conducted a school intervention study targeting children with SCD (Koontz, Short, Kalinyak, & Noll, 2004). This randomized clin ical pilot trial provided a ps ychoeducational intervention for children with a wide range of adjustment on i ndices including knowledge and self-concept. After receiving information about SCD etiology and management, results showed that the school intervention did not affect self -concept. Although it was hypothesized that children receiving information about SCD would demonstrate high se lf-concept following treatment, children rated their self-concept as similar to pretreatment. An intervention focused on self-concept may need more concentration on particular problems expe rienced by children with negative self concept
26 scores, as this intervention may have been t oo broad to enact a cha nge in a self-concept development. The primary aim of this study is to identify possible correl ates of self-concept on specific domains and contribute information for mo re focused and effective future interventions. Coping and Adjustment Coping is a factor that re searchers have found to be related to the physical and psychological health of children with SCD. Res earchers found that pallia tive coping strategies like, wishful thinking, and avoidan ce were associated with poorer adjustment (White, Richter, & Fry, 1992). Conversely, active coping styles, such as problem-s olving and distraction, have widely been associated with positive adjustme nt (Lewis & Kliewer, 1996). It has also been reported in the literature that patients with more negative thinking patterns have greater difficulties adjusting to SCD pain (Gil et al., 1997). In addition, the use of pain-related coping responses (i.e., ignoring pain, ca lming self-statements) appears to be related to the frequency, duration and severity of painful episodes (M cCrae & Lumley, 1998). Patients who had higher negative emotional and behavior responses (i.e., catastrophizing, a nger self-statements) scores on the Coping Strategies Questionnaire (CSQ) had mo re frequent painful episodes and more severe pain. Gil et al. (1997) also linke d negative thought patterns to mo re severe pain in sickle cell disease patients. For children coping with sickle cell disease, parents may be an especially important influence on the way the child deal s with pain (Gil, Williams, Thompson Jr., & Kinney, 1991). Gil et al. (1993) found that parents with maladaptive coping styles were more likely to have children who used maladaptive pain coping strategies in response to pain. Thus, coping has consistently demonstrated a signifi cant relationship with adjustment and is particularly important in understa nding the adjustment of childre n with SCD. More information is needed to evaluate the role of coping in the deve lopment of self concept.
27 Thus far, coping studies invol ving children with SCD have fo cused mainly on pain coping strategies. The impact of general coping styles has not often been explored in this population. Lewis and Kliewer (1996) conducted one of the fe w studies that evaluated the use of general coping strategies. They examined whether coping plays a mediating or moderating role in the relationship between hope and adjustment in children with SCD (Lewis & Kliewer, 1996). Results revealed that coping a ffected the relationship between hope and anxiety. Children with low levels of hope reported high levels of anxiety when active coping, support coping, and distraction coping were high. A br oader conceptualization of copi ng that includes general coping style in addition to pain coping strategies may be helpful for children with SCD, as they will likely face both illness complications and gene ral problems as they progress towards adulthood. Although many factors have been hypothesized to affect the relati onship between illness parameters and psychosocial outcomes, coping style has received the most attention and empirical support. Pain coping st rategies have frequently been correlated to psychological adjustment (Gil, et al., 1997; Gil et al., 2001). Gil and colleagues have extensively studied the contributions of pain coping style to health car e utilization, school attend ance, and interference in activities at home. Specificall y, they found that children using multiple cognitive and behavior coping strategies in dealing with pain experien ced fewer negative outcomes such as ER visits and decreased activity at home (G il et al., 1997). In addition, inte rventions that have focused on teaching effective daily pain coping skills have b een effective in managing pain for children with SCD (Gil et al., 2001). Broome and colleagues ha ve also employed a successful intervention targeting the use of pain coping strategies (Bro ome et al., 2001). Given the lack of information about the relationship between a childs general c oping style and a psychosocial outcome such as self-concept and the demonstrated importance of pain coping strate gies to adjustment, additional
28 research focusing on the general coping styl e employed by children may provide useful information. The current study explores whether mo re general coping strategies factor into the relationship between subjective ratings of illness and self-concept. Self Concept in Adolescence Another important aim of the present study is to evaluate self-concept ratings of children with SCD within a developmental context. In particular, adolescents with SCD experience a number of physical symptoms and often an in creased occurrence of pa in episodes (Holbrook & Phillips, 1994). Research also suggests that th is developmental group may be at a heightened risk for developing problems in relation to their illness (Brown et al., 2000). In lifelong chronic illnesses such as SCD, adolescence is the period during which awareness of the limitations imposed by the illness and its implications for the future occur (Brown et al.). Interventions may need to be specifically focused toward this de velopmental group to improve adjustment and the identification of factors associat ed with problematic adjustment would be a key contribution. A number of studies have focused specifically on adolescents with SCD to gain a greater understanding of this period of development. Ho wever, there has been inconsistency in the findings as to the level and nature of the risk fo r poor adjustment in this group (Burlew, Telfair, Colangelo, & Wright, 2000). With the advancement in the use of theoretical models to explain differences in adjustment within an illness popul ation, researchers have id entified several factors that may account for variability in the psychologi cal adjustment of adolescents with SCD. For example, Burlew and colleagues ( 2000) used a broad theoretical model to determine the relative contributions of biomedical factors and psychosocia l factors to adjustment in adolescence. They found that psychosocial factors su ch as self-esteem, social support, and family relations accounted for variability in re ports of depression and anxi ety symptoms. Conversely, the contribution of the biomedical i ndex (taken from review of medi cal record) was not significant
29 within the model. This measurement of illness se verity did not include ratings from physicians or adolescents and perhaps the in clusion of such a factor with in a model would more closely relate to outcome measures. The current study includes ratings from both adolescents and physicians to evaluate whether perceptions of SCD severity factor more significantly into models of adolescent adjustment than do more objective indices of disease severity. In particular, the development of a healthy self-concept in adolescence may be hindered by limitations in activities and delayed maturation often experienced by children with SCD. Brown and colleagues (1993) suggested th at physical symptoms in comb ination with other stressors, such as limitations in physical and social activities, decrease social competence for adolescents with SCD. Researchers comparing the perceive d competence of adolescents with SCD to a healthy sibling found similar ratings of self-competencies on three of four scales. However, they reported lower scores on the perceived physical competence scale for the adolescents with SCD than siblings (Lee, Phoenix, Brown, & Jackson, 1997). The purpose of the current study is to closely evaluate reports of illness severity a nd self-concept to determine whether this group displays a distinct pattern of adjustment thus warranting a separate, more focused intervention. Study Aims In sum, the current study aims to replicate the findings of a recent illness perception study conducted by Connelly and colleagues (2005) an d expand the knowledge base to include an evaluation of the impact of perceptions of illness severity on child report of self-concept. Although researchers have suggested that a number of factors affect self-esteem and perception of competence, research has not addressed the contribution of conception of illness specifically to the formulation of self concept in this pe diatric population. The current study aims to provide data on whether children with SCD are able to progress toward adulthood with a healthy, positive view of themselves and th eir abilities. In addition, more information is needed regarding
30 the specific competencies that may be affect ed by the presence of a chronic illness. While children with SCD seem to have a positive concep tion of their abilities compared with children without a chronic illness, research has also sugge sted that children with SCD have particular problems in academic, social, and physical aren as (Thompson et al., 2003; Boni, Brown, Davis, Hsu, L., & Hopkins, 2001). Thus, do documented limitations in these areas of functioning translate to negative reports on the academic, so cial, and physical subs cales of a self-concept measure? The current study evaluates the association betw een subjective ratings of illness severity and ratings of self-concept given by children with sickle cell di sease. Sickle cell disease was chosen as an exemplar disease because it presents unique challenges for families and children, with children experiencing a range of potentia lly life-threatening symptoms including sudden, often severe episodes of pain. In addition, research has historically been relatively limited in this area of pediatric psychology. The current study also explores the discrepancies among ratings of disease severity given by different sources (physicians, parents, and children) most often deemed crucial in health care decisions regarding children with a chr onic illness. Research has shown that using a multiple informant method provides added validity to findings and presents a broader perspective for thei r application (Lamanek, Ho rwitz, & Ohene-Frempong, 1994). Because of evidence suggesting a heightened risk of poor adjustment in adolescence in this illness population, the use of a developmental fram ework in evaluating self-concept is warranted for the purposes of designing future intervention s. The current study explores the ratings of adolescent ratings of self-concept and compares these ratings to thos e of school-aged children with SCD.
31 A number of hypotheses were tested in the current study. 1) The current study hypothesizes that children with SC D will rate the specific self concept subscales of social, academic, and physical significantly lower than th at of a normative sample. 2) It is also hypothesized that childrens own ratings of di sease severity will demonstrate a significant relationship with self-concept. Children who rate their own illness as more severe will report a lower self concept. 3) The current study also hypothesizes that objective measures of illness severity (i.e., SCD type, number of hospitalizations) will demonstrate no significant relationship with ratings of self-concept. 4) The current study hypothesizes that perceptions of disease severity reported by parents, children, and physic ians will differ. Childre n will rate their own illness severity as less severe than their prim ary caregiver and physician. 5) The current study hypothesizes that child coping styl e will mediate the relationship between perception of illness severity and self concept. 6) Given research documenting pot entially problematic adjustment during the developmental period of adolescence, it is hypothesized th at adolescents will demonstrate lower self-concept in the areas of social, academic, and physical than younger children.
32 CHAPTER 2 METHODS Participants The current sample included 40 children betw een ages 9 and 18 years with sickle cell disease and their caregivers. Twenty-nine partic ipants were recruited from the University of Florida Sickle Cell Disease Pediatric Outpatient C linic and 11 participants were recruited from Cincinnati Childrens Hospital Medical Centers Comprehensive Sickle Cell Center. This age range was chosen to explore a developmental co nceptualization of self-concept and youth were grouped into two categories: school-aged (9-12 years) and adolescents (13-18 years). Forty-three potential pa rticipants were approached during routine clinic visits, while waiting for their appointments. Three eligible participants were not included for the following reasons: (a) two parents declin ed to participate because they were too busy, and (b) one participant signed the consent form but did not complete the study questionnaires. In addition, one participants information was not used in descriptive and co rrelational analyses because of incomplete data. Seventy-four percent of the primary caretaker s included in the study were mothers (Table 2-1 for demographic information). The mean age of primary caregivers was 40.2, ranging from 25.6 67.9 years of age. All par ticipants in the study were A frican American. Thirty-seven percent of primary caregivers were single/never married, 34% were married, and 18% separated. The median household income was reported to be in the $10,000 $19,999 range. The mean age of children in this sample was 13.3 years and slightly more than half of the sample was female (52%). Sixtyfive percent of children had SS subtype of SCD, 7.5% had SC disease, and 7.5% had sickle beta thalasse mia. Thirty-three percent of children had no hospitalizations in the past year, 25% were hospitalized 1-2 times, and 10% had been
33 hospitalized 3 or more times. Information re garding sickle cell type and number of hospitalizations was not available for four child ren because of insufficient access to medical history. Procedure The protocol and consent forms were approve d by the appropriate Institutional Review Boards at the two recruitment sites. Permission to enroll families was first obtained from the childs attending physician or nurse practitioner. The physician or nurse then asked families during a routine clinic visit whether the researcher could approach them. Eligibility criteria included: 1) diagnosis of sickle cell disease, 2) child between the ages of 9-18 years, 3) no hospitalizations related to sickle cell disease within the past two weeks, 4) willingness of parent and child to participate and co mply with study procedures. Participants were then appro ached during their clin ic visit and given information about the study. After completing informed consent and assent procedures, the primar y caregiver and child were asked to complete study questionnaires. Chil dren were first asked to complete a short cognitive measure (i.e., subtest of WIAT-II Abbreviated) to ensure that they were reading on a 3rd grade or higher reading level. If the child was not reading at a 3rd grade level, the primary investigator assisted the child in completing stud y questionnaires. However, all children in the current study met reading level criteria. Children were given the option of receiving assistance completing questionnaires. The prin cipal investigator or research assistant then administered the interview version of the Kidcope to children younger than 13 years, as recommended by the authors of the measure. Children aged 13 years or older completed a se lf-report version of the Kidcope questionnaire. The researcher remained in the room while families completed the questionnaires to answer potential questions about the measures. The attending physician or
34 nurse practitioner in charge of the childs me dical care also completed a short questionnaire about the childs disease severity. Families were offered compensation for their participation in the study. Families recruited at the University of Florida were offered $5 gi ft cards for participating in the study. Families recruited at Cincinnati Child rens Hospital Medical Center were offered $45 for their participation in the study to be consistent with compensation provided by co -investigators at this site for other protocols with this population. Measures Demographic Information Form Parents completed a Demographic Information Form during the clinic visit to obtain information such as date of birth, gender, pa rents age, socioeconomic status, and parent occupation. Information about the past medical history of the ch ild was also obtained from the parent (Appendix A). Chart reviews were conducted to obtain inform ation regarding hospitalizations, ER visits, and unscheduled clinic visits. Wechsler Individual Achievement Test-S econd Edition (WIAT-II Abbreviated) The WIAT-II Abbreviated is a brief test of achievement skills for individuals ranging in age from 4 years to 85 years (Wechsler, 2002). Th e Word Reading subscale of the WIAT-II was used to determine the reading level of children r ecruited for the current study, as past research has documented a heightened risk for learning di fficulties in this pediat ric population (Thompson et al., 2003). Children were asked to read each word aloud and given a score of 1 or 0 for each word (Appendix B). Children scoring below th e 3rd grade reading level were assisted by research personnel in completing the re mainder of the study questionnaires.
35 Multidimensional Self Concept Scale (MSCS) The MSCS is a 150-item self-report measure that assesses global self-concept and six context-dependent self-concept domains that are functionally and theoretically important in the social-emotional adjustment of youth and adoles cents (Bracken, 1992). The six domains assessed by the MSCS include Social, Competence, Affect, Academic, Family, and Physical scales. Each item is rated on a 4-point likert scale ranging fr om strongly agree to strongly disagree. Each domain yields a raw score, which is then conve rted to a standard score. The MSCS subscales demonstrate very high reliability (coefficient al pha > .90), and the Total Scale Score reliability exceeds .97 for the total sample (Appendix C). Illness Severity Questionnaire The Sickle Cell Questionnaire is a 6-it em questionnaire created by Connelly and colleagues (2005) to measure percep tions of illness severity in ch ildren with SCD, their parents, and physician. This measure was used to assess rati ngs of illness severity in this study. The items on this questionnaire were used to measure percep tion of the presence of complications of SCD using a 100mm visual analog scale w ith not at all and worst possible as the anchor points. Questions pertain to the areas of illness severity, functional li mitation, and pain level (Appendix D). Caregivers rated their childs illness severi ty similarly using a 100mm analog scale with not at all and worst possible as the anchor poi nts (Appendix E). Attendi ng physicians were also asked to complete a Sickle Ce ll questionnaire rating th e childs symptom severity and functional limitations (Appendix F). Kidcope Child coping style was evaluated using the Kidcope questionnaire, a self-report multidimensional measure of childrens coping strategies (Spirito, Stark, & Williams, 1988). This measure requires children to think about a specific situation and indicate which of 10
36 coping strategies they have used in response to this situation (Appe ndix G). There are two versions of the Kidcope, a younger version fo r children 7-12 years old and a version for adolescents between 13-18 years old. For the pr esent study, children were asked to complete a coping questionnaire for a common problem and an illness-related problem. The Kidcope contains 10 subscales: problem-sol ving, distraction, social support, social withdrawal, cognitive restructuring, self-criticism blaming others, emotional re gulation, wishful thinking, and resignation. The younger version was administer ed by interview format. The younger version contains 15 items, 1-2 items per coping strategy. The older version contains 10 items, 1 item per strategy. On each form, the child/adolescent is asked to name a specific problem and then respond whether the problem made him/her nervous sad, or angry, each rated on a 5-point likert type scale ranging from not at al l to very much. Next the child is asked to indicate whether or not he/she used any of the 10 strategies to help deal with the spec ified problem (Frequency Scale). If a child/adolescent answered yes to us ing a particular strategy, the efficacy of that response was rated on a 3-point Efficacy Scal e (not at all, a little, or a lot). Test-retest correlation coefficients for th e Kidcope over 3 days, 7 days, and 10 weeks range from low to moderate correla tions at the ten week interval (.15 to .43), and from moderate (.41) to high (.83) for the 3 to 7 day interval (S pirito et al., 1988). Spirit o et al. noted that the lower correlations at the 10 week point are consistent with the notion that coping is a process measure with only limited stability within individuals over time (Lazarus & Folkman 1984). The results from validity studies indicate moderate to high validity, with coefficients ranging from .33 to .77 when Kidcope items were correlated with another commonly used coping scale, the Coping Strategies Invent ory (Spirito et al.).
37 Statistical Analyses Descriptive statistics (means and standard deviations) were used to characterize the demographic variables, self-concept, copi ng, and illness ratings. 1) The current study hypothesized that children with SC D would rate the Social, Academ ic, and Physical subscales of the Multidimensional Self Concept Scale lower than the normative sample. A comparison of sample Standard Score means to published no rms was used to determine the relationship between the sample of the curr ent study and the normative samp le. 2) To address the hypothesis that childrens ratings of their di sease severity would be significan tly related with self-concept, a Pearson correlation analysis was conducted. Childr en who rated their SCD as more severe were expected to rate their overall self concept lower than children who rated their illness as less severe. 3) To evaluate the hypothesis that objective measures of illness severity would demonstrate no significant relati onship with ratings of self-concept, a Pearson correlation analysis was conducted. 4) To address the hypot hesis that parents, children, and physicians would display differing perceptions of disease severity (pain, functional limitation, and symptom severity), one-way repeated-measures ANOVAs were conducted. 5) Barron & Kennys test of mediation (1986) was used to assess whether co ping style mediates the relationship between subjective illness severity and self concept. This included correlati ons and a hierarchical regression to determine the fitnes s of the proposed model. 6) Independent samples t-tests were used to evaluate the hypothesi s that adolescents ( 13-18 years) would demonstrate lower selfconcept in the areas of social, academic, and ph ysical than younger children (9-12 years). Power calculation: The most conservative an alysis for the present study was a one-way repeated-measures ANOVA. Based upon the sample size of N=40 per group, power to detect a moderate to large effect size between the two groups (d=.60; = .05; one tailed test) was estimated to be .89. In addition, the sample size is comparable to previous psychosocial research
38 studies that have provide d sufficient power for moderate to la rge effect sizes in pediatric SCD (Connelly et al., 2005).
39 Table 2-1. Demographic characteristics of parents and children with SCD (n=40) Characteristic M SD Parent age 40.2 8.9 Child age 13.3 2.9 Number % Reporter Mother 28 73.7 Father 4 10.5 Grandparent 3 7.9 Other 3 7.9 Parent Marital Status Married 13 34.2 Separated 7 18.4 Divorced 3 7.9 Single/Never married 14 36.8 Widowed 1 2.6 Parent education Partial high school 4 10.3 High school grad. 17 43.6 Partial college/voc. 12 30.8 College grad. 5 12.8 Grad./Prof. degree 1 2.6 Child gender Male 19 47.5 Female 21 52.5 Parent ethnicity 40 100 Child ethnicity 40 100
40 CHAPTER 3 RESULTS Comparison of Sample and Normative Standard Scores on MSCS The current study hypothesized that children wi th SCD would rate the Social, Academic, and Physical subscales of the Multidimensional Self Concept Scale significantly lower than a normative sample of children. Examination of the standard score means and standard deviations of the current sample indicated that their scores on the Social ( M = 102.1, SD = 14.5), Academic ( M = 102.8, SD = 15.9), and Physical ( M = 102.6, SD = 13.8) subscales of the MSCS were within the average range and comparab le to the MSCS normative sample ( M = 100, SD = 15) (Figure 3-1). Standard Scores can be classified into descript ive categories (i.e., Extremely Positive Self Concept, Very Positive Self Concept, Moderately Positive Self Concept, Average Self Concept, Moderately Negative Self Concept, Very Ne gative Self Concept, Extremely Negative Self Concept) that describe the degree of positive and/or negative self concept a child reports. As shown in Figure 3-2, 18% of children ra ted their self concept as lower than Average on the Social subscale. Ten perc ent of ratings on the Academic subscale were classified in a range below Ave rage (Figure 3-3). Six percent of children in the current study rated their self concept on the P hysical subscale of the MSCS as Moderately Negative or lower (Figure 3-4). Correlation between Perceived Illness Severity and Self Concept The current study hypothesized that children who rated their sickle cell disease as more severe would rate their overall self concept lower than children who rated their illness as less severe. Pearson r correlational analysis, however, indicated no signi ficant relationship between childrens ratings of illness severity and overall self-concept, r = .08, p > .05. There was also no significant relationship found betwee n childrens ratings of illness se verity and subscales of the
41 MSCS (Social, r = -.08, p > .05, Cognitive, r = .12, p > .05, Affect, r = .03, p > .05, Academic, r = .08, p > .05, Family, r = .14, p > .05, Physical, r = .03, p > .05). Objective Measures of Illness Severity and Self Concept The current study hypothesized that objective measures of illness severity would demonstrate no significant relationship with ratin gs of self-concept. A Pearson r correlational analysis was conducted and indica ted that there was no significant relationship between objective indices of illness severity and the total self-concept score, [h ospitalizations, r = -.24, p > .05; sickle cell type, r = -.28, p > .05]. Differing Perceptions of Illness Severity The distributions for ratings of illness severity by rater are shown in Figure 3-5 (parents), Figure 3-6 (children), and Figur e 3-7 (physicians). Repeated-m easures one-way ANOVAs were conducted to evaluate the hypothesis that pare nts, children, and physicians would display differing perceptions of disease severity (symptom severity, pain, and functional limitation). The results for the ANOVA indicated a significant ra ter effect for symptom severity, Wilks = .76, F (3, 34) = 5.49, p = .008, multivariate 2 = .23. Follow-up pairwise comparisons indicated a significant discrepancy between child and caregiver perceptions of illness severity, t (37) = 3.48, p = .001. Results also indicated a significan t discrepancy between child and physician perceptions of illness severity, t (37) = -2.45, p = .02. The direction of th e discrepancy indicated that children perceived less symp tom severity than did parents and physicians. No significant discrepancies in perceptions of functional limitation (Wilks = .99, F (3, 34) = 0.105, p > .05 multivariate 2 = .02), or pain (Wilks = .99, F (2, 37) = 0.105, p > .05, multivariate 2 = .003) were observed among raters.
42 Use of Coping Strategies To characterize the current samples use of c oping strategies, descrip tive statistics were completed. Results showed that children on av erage used 6 of 10 coping strategies on the Kidcope in response to both an illness-relate d and common problem. The mean coping efficacy rating for illness-related problems was 1.18 ( SD = .51) and 1.23 ( SD = .41) for common problems, suggesting that coping st rategies were on average rated as a little effective. Children in the current study rated social support as th e most effective coping strategy for an illnessrelated problem. Children rated resignation as the least effective coping strategy for an illness related problem (Table 3-1). For a common problem social support was also rated as the most effective coping strategy for this sample. The sample rated self-criticism as the least effective coping strategy for a common problem (Table 3-2). On the illness-specific Kidcope questionnaire, coping strategies used most often by the sample were: cognitive restructuring, distraction, wishful thinking, and so cial support. Coping strategies us ed least often in response to an illness-related problem included: self criticis m, blaming others, and re signation (Table 3-3). On the common problem Kidcope questionnaire, ch ildren and adolescents also rated cognitive restructuring as the most used coping strategy fo llowed by problem solving, social support, and emotional regulation. Coping strategies used least often in response to a common problem included: self criticism, blaming ot hers, and resignation (Table 3-4). Coping as a Mediator The mediating effect of coping was evaluated in preliminary analyses, using correlations and regression models to examine the relationship among perceptions of illness severity, coping, and self concept. The current study predicted that coping would mediate the relationship between childrens ratings of illn ess severity and self concept. Specifi cally, children who rated their sickle cell disease as more severe were expected to use fewer coping strategies, and in turn, rate their
43 overall self concept lower. Becau se of the small sample size and cross-sectional nature of these data, tests of the proposed mediating effect s of coping are considered exploratory. Barron & Kennys test of mediation (1986) wa s used to assess whether coping mediated the relationship between perceptions of illness severity and self concept. This included correlations and a hierarchical regression to determine the f itness of the proposed model. However, no significant association was found between childrens perceptions of illness severity and self concept. Therefore, the primary requi rement of the mediation model was not met and further statistical tests evaluating the proposed model were not conducted. Developmental Differences in Self Concept The childs developmental age was expected to be related to the social, academic, and physical domains of self-concept. Specifically, a dolescents were expected to report lower levels of Social, Academic and Physical self concep t than younger children on th ese subscales of the MSCS. Results, however, indicated that adoles cents rated their self -concept on the Social subscale of the MSCS higher than younger children, t (38) = -2.18, p = 03 (Table 3-5). There were no other significant diffe rences found between adolescent s and younger children on the Academic [ t (38) = -.81, p > .05] or Physical domains [ t (38) = -.81, p > .05] of self concept.
44 Table 3-1. Rankings for efficacy of illness coping strategies Kidcopeillness related problem questionnaire 1. Social Support 2. Cognitive Restructuring 3. Problem Solving 4. Distraction 5. Emotional Regulation 6. Wishful Thinking 7. Blaming Others 8. Social Withdrawal 9. Self Criticism 10. Resignation
45 Table 3-2. Rankings for efficacy of common coping strategies Kidcopecommon problem questionnaire 1. Social Support 2. Emotional Regulation 3. Cognitive Restructuring 4. Distraction 5. Resignation 6. Problem Solving 7. Social Withdrawal 8. Blaming Others 9. Wishful Thinking 10. Self Criticism
46 Table 3-3. Illness related Ki dcope frequency rankings Kidcopeillness related coping strategies 1. Cognitive Restructuring 2. Distraction 2. Wishful Thinking 3. Social Support 4. Emotional Regulation 5. Problem Solving 6. Social Withdrawal 7. Resignation 8. Self Criticism 9. Blaming Others
47 Table 3-4. Common problem Kidcope frequency rankings Kidcopecommon problem coping strategies 1. Cognitive Restructuring 2. Problem-Solving 3. Social Support 4. Emotional Regulation 5. Wishful Thinking 6. Distraction 7. Social Withdrawal 8. Resignation 9. Self Criticism 9. Blaming Others
48 Table 3-5. Differences in ratings of self concept by developmental period Measure Younger Children (9-12 yrs) n = 20 Adolescents (13-18 yrs) n =20 M SD M SD df t MSCS Social 97.3 14.8 106.9 12.8 38 -2.18* Academic 100.9 16.4 104.9 15.1 37 -.81 Physical 103.1 13.7 102.1 14.2 37 .24 Note *p < .05.
49 0 25 50 75 100 125 s oci al c omp e tenc e a f fect academic famil y phys i ca l tot a l sco r e Figure 3-1. Standard score means for the Social, A cademic, and Physical subscales of the MSCS. The MSCS normative samples scaled score mean is 100.
50 8% 10% 64% 18% Very Positive Moderately Positive Average Moderately Negative Figure 32. Percentages of par ticipant self concept classifica tions corresponding to standard score ranges on MSCS-social subscale (N = 40).
51 3% 8% 10% 69% 10% Extremely Positive Very Positive Moderately Positive Average Moderately Negative Figure 3-3. Percentages of partic ipant self concept classificati ons corresponding to standard score ranges on MSCS-academic subscale (N = 39).
52 3% 3% 12% 76% 3% 3% Extremely Positive Very Positive Moderately Positive Average Moderately Negative Extremely Negative Figure 34. Percentages of par ticipant self concept classifica tions corresponding to standard score ranges on MSCS-physical subscale (N = 39).
53 Figure 3-5. Distribution of data for parent ratings of illness severity. 100.00 80.00 60.00 40.00 20.00 0.00 Parent illness severity ratings 10 8 6 4 2 0 Std. Dev. =30.167 Mean =59.846 N =39 Fre q uenc y
54 Figure 3-6. Distribution of data for child ratings of illness severity. 100.00 80.00 60.00 40.00 20.00 0.00 6 4 2 0 Frequency Mean =41.2051 Std. Dev. =27.71868 N =39 Child illness severity ratings
55 Figure 3-7. Distribution of data for physician ratings of illness severity. 100.00 80.00 60.00 40.00 20.00 0.00 Physician illness severity ratings 6 4 2 0 Frequency Mean =54.5405 Std. Dev. =26.81997 N =37
56 CHAPTER 4 DISCUSSION The central purpose of the current study was to evaluate the role between childrens perceptions of their sickle cell il lness severity and ratings of self concept. The study also aimed to explore the degree of discrepancy in percep tions of illness severity among parents, children, and physicians. In addition, the pr esent study evaluated the impact of coping on adjustment. The current study aimed to consider a developmenta l context to understand ing the development of self concept in children with sickle cell disease. Results of the study suggest th at few children with sickle cell disease in this sample reported a low self concept in comparison to a no rmative sample of children. On the contrary, the present sample scored in the average range w ith many reporting a self concept that can be classified in an above average self concept range. This findi ng suggests that most children in the present study had a positive belief in their abilities across a wide range of domains and experience similar adjustment as peers without a chronic illness. These results support research that has concluded that as a whole, children w ith sickle cell disease pe rceive themselves as capable and seem to have a great deal of confid ence in their abili ties (Clay & Telfair, 2007; Noll, Reiter-Purtill, Vannatta, Gerhardt, & Short, 2007) In addition, children with SCD who report a positive belief in their ability desp ite their illness have better h ealth outcomes and psychological adjustment (Clay & Telfair, 2007). Although the present study hypothesize d that children would rate their self concept lower on the Social, A cademic, and Physical subscales of the MSCS, children with SCD rated themselves similarly to the normative sample of children on these subscales. Contrary to past research that sugge sted that children with a chronic illness report lower self concept scores on domains impacted by their chronic condition, the present sample of children with SCD did not report problematic ad justment in areas of functioning potentially
57 affected by their illness. A potential explanation fo r these findings is that children with SCD are able to adapt and change their view of the rela tive importance of skills and assign greater worth to other aspects of self-concep t. If a child with SCD is e xperiencing academic problems at school, aspects of learning such as perseverance and effort may help booster his/her sense of self-worth in this domain. In addition, childrens self concept ratings on a physical subscale may be more affected by the number of sickle cell co mplications experienced than their status as a part of a particular illness group. There was no support found for the study hypothe sis that there would be a significant correlation between childrens perceptions of their illness severity and ratings of self concept. Children that rated their SCD as more severe did not report lower self concept. One possible explanation for this nonsignifican t finding is that other psychosocial variables (e.g., family functioning, maternal adjustment) most commonly evaluated in models of childhood adjustment are more closely related to ratings of self c oncept. As the present study hypothesized, objective indices of illness severity were not associated wi th ratings of self con cept. Past theoretical models of child adjustment to chronic illness have emphasized the impact of psychosocial factors over illness factors such as objective measures of illness severity in the psychological adjustment of children with chronic illnesses such as cystic fibrosis, JRA, and sickle cell disease (Garstein, Short, Vannatta, & Noll, 1999). The findings of the current study suggest that, along with objective indices of illne ss severity, perceived illness severity is not a central fact or in evaluating self concept and support the emphasis on psychosoc ial factors over disease-related variables in the evaluation of models of adjustment. The re sults of the present study indicate that neither objective nor subjective measures of illness seve rity significantly impact childrens thoughts about their own abilities. Future evaluations of perceptions of illness severity in children with
58 SCD should evaluate whether this variable may be more closely related to other psychological outcome variables. Support was found for the hypothesis that percep tions of illness severity differ by rater. Specifically, results showed that children differ significantly from parents and physicians in their perception of the severity of their sickle cell disease, rating their illness as less severe. There was no significant difference between perception of sickle cell severity as rated by parents and physicians. These results replic ate the findings of Connelly an d colleagues (2005) who also found that children with sickle cell disease perceived their illness as less severe than their parents and physicians. However, it appears that children have a similar vi ew as parents and health care providers regarding functional limitations caus ed by SCD. Children a nd parents also rated severity of pain episodes similarly. Overall, th ese finding suggest that a lthough children perceive aspects of their sickle cell dise ase similarly as parents and physicians, they differ in the way these symptoms affect their perception of their ov erall illness severity. Childrens view of their overall illness severity may serve as a buffer against problematic adjustment. Contrary to the study hypothesis, there wa s no support found for a developmental pattern in ratings of self concept char acterized by deficits in abilitie s reported by adolescents. Research has shown that adolescence can be a period of problematic adjustment (Brown et al., 2000). However, results from the current study indicate that the current sample of adolescent with SCD reported a higher self concept on the Social subscale of the MSCS than did younger children. This result may suggest that for this sample of adol escents, their past e xperiences in social situations have helped them grow more confident in their social abilities. Adolescents in the study may also have not experien ced physical symptoms that coul d have impacted their social functioning.
59 Overall, children in the present study reporte d that coping strategies were helpful in dealing with identified problems. Positive/activ e coping strategies such as social support, cognitive restructuring, and distra ction were rated as more effec tive than negative/passive coping strategies such as resignation and blaming othe rs and self. This is in line with research documenting the effectiveness of active coping strategies for children with chronic pain including children with sick le cell disease (Gil Williams, Thompson, & Kinney, 1991). Children in the present study reported using a wide range of coping strategies in response to both illness related and common problems. This may indicate that in the present sample, the use of a wide range of coping strategies is important in helping children effectively deal with problems related to their illness as well as difficulties unrel ated to their illness. Findings build on prior research documenting patterns of pain coping stra tegies for children with SCD, and suggest the usefulness of including descriptions of coping patterns for other illn ess-related and common problems. There was no evidence found for the mediating ro le of coping in the relationship between subjective illness severity and self concept.. Because there wa s no significant relationship found between ratings of illness severity and self concept, the impact of the number of coping strategies on the relationship between these two variables c ould not be evaluated fu lly. In addition, a small sample size restricted the ability to reliabl y group coping skills in to positive/active and negative/passive groups and further evaluate the impact of coping efficacy on adjustment. However, a number of research studies have concluded that coping, especially pain coping strategies remain an important f actor to consider in the psychol ogical adjustment of children with sickle cell disease. Thus, coping should be includ ed in future research on adjustment to possibly
60 evaluate its role in the relationship between two more significantly related psychosocial variables. There are several limitations that should be considered. The findings of the current study should be considered exploratory due to the small sample of pa rticipants. Due to the small sample size, it is unclear whether the findings of the study are generalizable to other children with sickle cell disease acro ss the country. In ad dition, the limited inclusion of other psychosocial predictors such as maternal adjustment factors and other child psychosocial factors, such as emotional and family factors may have left out aspects important in understanding a model of child adjustment. Another limitation was studys restricted us e of objective illness severity markers (e.g., sickle cell type, and number of hospitalizati ons). Future studies should use a wider range of objective illness severity i ndices (e.g., fetal hemoglobin level, prescribed medication, days missed from school) to more accura tely represent this va riable in research. Future studies should include a larger sample to increase generalizability of findings. In addition, future studies should use a more compre hensive measure of illn ess severity ratings including multiple longitudinal ratings to increas e the validity of this rating. It may also be helpful to include measures of academic performance such as GPA or teacher report of performance to determine whethe r childrens perceptions of their academic performance actually reflect their performance in school. Thus, it woul d be important to know whether the samples comparable academic self concept is a buffer for future difficulties or puts them at risk because of an inaccurate view of their abilities, as academic difficult ies and cognitive problems have been well documented in this pediatric populat ion (Wang et al., 2001). Future research should include multiple informants of self concept, as researchers have found th at teachers and peers rate the competencies of children with SCD differently than do children themselves and
61 understand how perceptions differ may increase understanding about the variability in the adjustment of children with SC D (Noll, Reiter-Purtill, Vanna tta, Gerhardt, & Short., 2007).
62 APPENDIX A DEMOGRAPHIC INFORMAT ION QUESTIONNAIRE
64 APPENDIX B WIAT-II ABBREVIATED WORD READING SUBSCALE
65 APPENDIX C MULTIDIMENSIONAL SELF CONCEPT SCALE
73 APPENDIX D SICKLE CELL QUESTIONNAIRE-CHILD
74 APPENDIX E SICKLE CELL QUESTIONNAIRE-PARENT
75 APPENDIX F SICKLE CELL QUESTIONNAIRE-PHYSICIAN
76 APPENDIX G KIDCOPE QUESTIONNAIRE
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86 BIOGRAPHICAL SKETCH Shalonda Katie Slater was born on August 8, 1979 in Pensacola, Florida. She was raised by her mother, Carol Pettway and has an older sist er, Katobwa Stallworth. She grew up mostly in Pensacola, Florida and graduated from Booke r T. Washington High School in 1997. She was awarded an academic scholarship to college a nd earned her B.S. in psychology from Florida Agricultural and Mechanical University in 20 01. Shalonda entered the doctoral program in clinical and health psychology at the University of Florida as a McKnight Fellow in the fall of 2001. She recently completed her yearlong clinical internship at Cincinnati Childrens Hospital Medical Center. After completing of her Ph.D program, Shalonda will accept a postdoctoral fellowship position focusing on pedi atric pain at Cincinnati Childrens Hospital Medical Center in the Division of Clinical Psyc hology and Behavioral Medicine.