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The Relationship Between Stress and Depression in Primary Caregivers of Children with Cystic Fibrosis

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Title:
The Relationship Between Stress and Depression in Primary Caregivers of Children with Cystic Fibrosis
Creator:
SLATER, SHALONDA K. ( Author, Primary )
Copyright Date:
2008

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Child psychology ( jstor )
Chronic conditions ( jstor )
Clinical psychology ( jstor )
Diseases ( jstor )
Fibrosis ( jstor )
Mothers ( jstor )
Parenting ( jstor )
Parents ( jstor )
Pediatrics ( jstor )
Psychological stress ( jstor )

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University of Florida
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University of Florida
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Copyright Shalonda K. Slater. Permission granted to the University of Florida to digitize, archive and distribute this item for non-profit research and educational purposes. Any reuse of this item in excess of fair use or other copyright exemptions requires permission of the copyright holder.
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5/1/2008
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82983679 ( OCLC )

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THE RELATIONSHIP BETWEEN STRESS AND DEPRESSION IN PRIMARY CAREGIVERS OF CHILDREN WITH CYSTIC FIBROSIS By SHALONDA K. SLATER A THESIS PRESENTED TO THE GRADUATE SCHOOL OF THE UNIVERSITY OF FLORIDA IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE UNIVERSITY OF FLORIDA 2003

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ACKNOWLEDGMENTS I would like to thank my faculty advisor, Alexandra L. Quittner, for providing the opportunity to conduct this research and for her mentorship throughout the process of writing this thesis. I would like to thank the National Institutes of Health for funding this research. I would also like to thank my colleagues in the Child Health and Family Development Research Lab for their assistance in data collection. Lastly, I would like to thank my family and friends for their support. ii

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TABLE OF CONTENTS Page ACKNOWLEDGMENTS..................................................................................................ii ABSTRACT.........................................................................................................................4 CHAPTERS 1 INTRODUCTION........................................................................................................1 Global Stress and Maternal Adaptation........................................................................4 Context-specific Stress and Maternal Adaptation........................................................6 2 METHOD...................................................................................................................13 Participants.................................................................................................................13 Procedure....................................................................................................................15 Measures.....................................................................................................................16 Parenting Stress Index.........................................................................................16 Family Stress Scale..............................................................................................17 Norbeck Social Support Questionnaire...............................................................17 Center for Epidemiological Studies Depression Scale........................................17 Statistical Analyses.....................................................................................................17 3 RESULTS...................................................................................................................19 Levels of Parenting Stress and Depression.................................................................19 Ratings of Illness-specific versus Normal Parenting Tasks.......................................20 Relationship between Global versus Contextual Parenting Stress and Depression...21 Developmental Differences in Levels of Parenting stress and Depression................22 Social Support and Maternal Adaptation....................................................................22 Note.............................................................................................................................26 4 DISCUSSION.............................................................................................................27 REFERENCES..................................................................................................................32 BIOGRAPHICAL SKETCH.............................................................................................36 iii

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Abstract of Thesis Presented to the Graduate School of the University of Florida in Partial Fulfillment of the Requirements for the Degree of Master of Science THE RELATIONSHIP BETWEEN STRESS AND DEPRESSION IN PRIMARY CAREGIVERS OF CHILDREN WITH CYSTIC FIBROSIS By Shalonda K. Slater May 2003 Chair: Alexandra L. Quittner Major Department: Clinical and Health Psychology The primary objectives of this study were to assess levels of global and context-specific stress and determine the relationship between stress and depression. The current study also evaluated the mediating effect of social support. Participants included 30 primary caregivers of children with cystic fibrosis (CF). Results revealed that primary caretakers experienced higher levels of context-specific and global stress (i.e., adaptability and demandingness) than normative samples of parents. They also rated CF-related tasks as more stressful than other parenting tasks, t (29) = -2.43, p < .05. The Adaptability (r = .43, p < .05), Demandingnesss (r = .45, p < .05), and Sense of Competence (r = .46, p < .05) scales of the global stress measure were correlated with depression. There was no significant relationship found between context-specific stress and depression. Perceived emotional support mediated the relationship between parenting stress and depression. These findings suggest that both global and context-specific stressors should be considered in future interventions to improve parental adjustment. iv

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CHAPTER 1 INTRODUCTION A growing number of children are living with a chronic illness, with recent data indicating that 18% of children have a serious illness that affects their daily functioning (Newacheck, McManus, Fox, Hung, & Halfon, 2000). Due to earlier diagnoses and advances in treatment, over 90% of children with severe chronic health conditions (e.g., cancer, cystic fibrosis) now survive into adulthood (Newacheck & Stoddard, 1994). Caring for a child with a chronic illness has been shown to affect family functioning by increasing parental stress and depression, marital role strain, and the occurrence of differential treatment of siblings (Cowen et al., 1986; Holden, Chmielewski, Nelson, Kager, & Foltz, 1997; Quittner et al., 1998; Quittner & Opipari, 1994). Note, however, that studies evaluating the impact of family functioning have produced inconsistent findings, with some studies reporting high rates of parental stress and depression (Pipp-Sigel, Sedey, & Yoshinaga-Itano, 2002; Quittner, DiGirolamo, Michel, & Eigen, 1992; Quittner et al., 1998; Thompson, Gustafson, Hamlett, & Spock, 1992), while others have shown that parents are coping fairly well with their child’s illness (Cowen et al., 1986; Geiss, Hammersley-Maercklein, Hobbs, Kramer, & Henley, 1992; Walker, Van Slyke, & Newbrough, 1992). One potential explanation for these contradictory findings on family adaptation is the approach used to measure key variables, which have varied in terms of their contextual specificity. Two contrasting models that have typically been utilized in 1

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2 studies of family adjustment to childhood illness have taken either a generic or context-specific approach to measuring stress. Generic measures assess the stress of general parenting tasks and situations (e.g., daily hassles, life events), while context-specific instruments focus on problems associated with a particular disease (e.g., dealing with symptoms, taking medications). The central purpose of this study was to assess the extent of parenting stress experienced by parents caring for a child with cystic fibrosis (CF) and to evaluate its relationship with depression. Mothers, often the primary caretakers of the household, have typically assumed most of the emotional and practical responsibility of caring for the child with a chronic illness (Hodgkinson & Lester, 2002; Quittner et al., 1998; Schulz & Quittner, 1998). For many, this is a highly stressful experience because of increased demands on their time and energy, worries about the long-term functioning of the child, and limited time for recreation (Quittner, Opipari, & Regoli, 1992; Wallander & Venters, 1995). For example, mothers of children with severe to profound hearing losses reported higher levels of stress than parents of hearing children, and specifically, rated their children as more hyperactive, demanding, and less adaptable than did mothers of normally hearing children (Quittner, Glueckauf, & Jackson, 1990). Increased parental stress has also been associated with limitations in the child’s functional status. Silver, Bauman, and Weiss (1999) found that a child’s level of independence was related to role restriction in mothers of children with chronic health conditions. Mothers who appraised their child’s condition as interfering with the development of age-appropriate physical, cognitive, emotional, and social behaviors rated

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3 their caregiving role as more stressful. In addition, they found that perceived role restriction was predictive of maternal depressive symptoms. Several other studies have also demonstrated a relationship between elevations in parental stress and depression. For example, a longitudinal study assessing maternal adjustment to insulin-dependent diabetes mellitus (IDDM) over a 6-year period indicated that the degree to which mothers perceived IDDM as bothersome or difficult to manage was related to levels of emotional distress. In contrast, objective measures of illness severity were not predictive of psychological adjustment, suggesting that the psychosocial burden of caregiving responsibilities were more strongly related to maternal adjustment than objective physical parameters (Kovacs, Iyengar, Goldston, & Obrosky, 1990). Similarly, across a group of chronically ill children, Jessop, Riessma, & Stein (1988) found that mothers who perceived their children to have more functional limitations reported more psychiatric symptoms of distress. Thus, mothers of children with chronic conditions appear to be at risk for psychological distress, particularly depression (Jessop et al., 1988; Walker, Ortiz-Valdes, & Newbrough, 1989; Silver, Bauman, & Weiss, 1999). There is considerable variability in the prevalence of depression in mothers of children with chronic conditions, with many families reportedly functioning well (Thompson et al., 1992; Walker, Ford, & Donald, 1987). For example, Thompson and colleagues (1992) documented significant variability in maternal adjustment, with approximately one third of mothers meeting criteria for poor adjustment. Walker and colleagues (1987) have also shown some variability in the presence of depression in parents of chronically ill children that may be explained by factors such as developmental

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4 context. They found clinically elevated levels of depression in mothers of children with cystic fibrosis for particular developmental levels. They concluded that mothers were generally able to adapt well to having a child with a chronic illness. However, there was increased distress associated with particular developmental periods, including adolescence (Walker et al., 1987). These findings suggest that it is important to take both developmental stage and the specific illness context into account in the study of parental adjustment to childhood chronic illness. Several theoretically based models have been proposed to account for variability in parental psychological adaptation to chronic childhood illness: models utilizing a more global approach (e.g., Wallander et al., 1989; Thompson et al., 1992) and those utilizing context-specific approaches (e.g., Quittner, Opipari, et al., 1992). These two contrasting theoretical models have produced differing results concerning the contributions of global and illness-related stress in parental adaptation. Global Stress and Maternal Adaptation Most models of parental functioning have employed generic measures to account for the variance in maternal adjustment. This approach allows for application to a diverse group of chronic illnesses, including asthma, cystic fibrosis, and congenital heart disease. This global, or noncategorical framework makes the assumption that there are more commonalities in the process of adaptation to chronic childhood illnesses, than there are differences. This contrasts with the categorical approach, which argues that each disease presents families with a unique set of challenges. Application of this global theory has led researchers to combine several chronic childhood illnesses in an effort to evaluate the usefulness and significance of relationships between stressors and adaptation.

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5 A prime example of the noncategorical approach is Wallander’s Risk and Resistance Model (Wallander et al., 1989), which has attempted to account for the variability in parental adjustment in families with a child who has a chronic illness or disability. This model theorizes that there are a number of factors that protect parents from adjustment difficulties, while others place parents at risk for poor adaptation. In a study that included 119 mothers of children with various chronic physical conditions, Wallander, Pitt, and Mellins (1990) found that higher maternal stress was related to mental health problems and was a potential risk factor for poor adjustment. In this study, the maternal stress construct included measures of daily hassles and general stressors related to having a child with a chronic disability or illness. Because of this generic measurement approach, the study was limited in its ability to identify specific stressors that were related to psychological distress in mothers within each chronic illness population. While proponents of the global model acknowledge that there are unique disease characteristics, some have concluded that global measures of parenting stress are of greatest importance in the study of maternal adjustment. Specifically, Davis, Brown, Bakeman, & Campbell (1998) found that daily parenting stress rather than illness-related stress accounted for a significant amount of variance in maternal adjustment in mothers of children with congenital heart disease. Similarly, Thompson et al. (1994) evaluated several maternal factors, including both daily parenting stress and illness-related stress in order to determine which variables better predicted maternal adjustment in mothers of children with sickle cell disease and CF. They found that daily hassles common to most parents accounted for a significant portion of the variance in maternal adjustment, as

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6 represented by several dimensions of psychological distress, including depression. In contrast, stress associated with the specific tasks of the chronic illness accounted for a significant, yet relatively small portion of the variance in maternal adjustment. This pattern was found for both mothers of children with sickle cell disease and CF. Proponents of the noncategorical approach have concluded that a number of similarities are present across illness populations. However, these studies have not typically measured the stressors specific to a particular chronic illness and thus, cannot identify the stressful situations most relevant to those families. This may be a significant limitation because without a detailed understanding of the specific problems that are most stressful to parents, it may be difficult to design effective interventions. Context-specific Stress and Maternal Adaptation In contrast to the global, noncategorical model, recent studies have advocated utilizing a disease-specific, contextual approach to the study of parental adaptation. Several researchers have found that measures of parenting stress specific to the tasks and demands of a particular illness are more strongly associated with maternal depression and further; provide more direct links to the development of interventions for families of chronically ill children (Quittner, 2000). They propose that the predictors of adjustment are not similar across chronic illness populations, and that the distinguishing features of a chronic illness may lead to varying degrees of difficulty experienced by families. Thus, studies that use a disease specific approach facilitate the identification of specific stressors that are related to maternal adjustment, which can then be targeted in an intervention. Recently, Mullins and colleagues (1995) investigated the relationship between maternal adaptation and child adaptation in families of children with CF and insulin

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7 dependent diabetes mellitus (IDDM). Although no overall differences were found in adaptation between disease groups on general measures of adaptation, different patterns of maternal-child adaptation emerged within groups. Specifically, maternal depression was associated with childhood depression in the diabetes group but not in the CF group. Similarly, other researchers have found differential patterns of adjustment between chronic illnesses. In a study comparing families of children with CF, diabetes, mental retardation, and well children, results showed that the nature of parenting stress varied according to the demands of the specific illness (Walker et al., 1989). Mothers of children with CF had higher stress levels compared to the other groups on indices such as the Terminal Illness scale. Importantly, families did not differ on generic aspects of stress. This suggested that mothers of children with chronic illnesses may not differ in general family functioning but that the specific characteristics of a chronic illness provide crucial information that may be overlooked when a context-specific approach is not employed. In addition, a disease-specific, contextual model of maternal adjustment has been employed by Quittner, DiGirolamo, and colleagues that highlights the specific challenges facing parents of a child with a particular chronic illness, cystic fibrosis (1992). Their findings were that higher ratings of stress were endorsed for stressors that were specific to the demands of caring for a child with CF, such as “maintaining diet” and “chest physical therapy.” Further, ratings of these specific stressors were associated with increased maternal depression, and these context-specific measures stress accounted for greater variance in maternal depression than did the measures of global stress. Importantly, one advantage of the categorical or disease-specific approach is that it has direct implications for interventions that seek to reduce parental stress and

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8 depression. For example, if the family of a child with CF reports high levels of stress associated with doing airway clearance, an intervention could identify strategies that reduce the stress of performing airway clearance. Thus, interventions based on a disease-specific model can precisely match problems to the parents who experience them and target stressors that uniquely impact parents. This is not possible in studies assessing global stressors. Social Support Although many factors have been hypothesized to affect the relationship between maternal stress and depression, social support has received the most attention and empirical support. The construct of social support encompasses several components, including emotional support, information and advice, and instrumental aid (e.g., money). Social support can be classified by the type of support offered, size of support network, perceived availability of support network, and amount of perceived support (Norbeck, Lindsey, & Carrieri, 1983). In the past, researchers have documented the relationship between social support and parental adaptation in various childhood chronic illness populations. For example, a study found that parents who were satisfied with the support offered by those within their network reported fewer emotional problems (Dunst, Trivette, & Cross, 1986). In addition, a study comparing maternal perceptions of their social support found evidence for its relationship to maternal stress. Mothers of children with asthma perceived their support networks as less adequate than did mothers of children with diabetes and healthy children, and these negative perceptions were associated with mothers reporting a greater number of stressful events (Hamlett, Pellegrini, & Katz, 1992). Although they provide

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9 evidence for a relationship between higher levels of stress and lower perceived social support, these findings also suggest that maternal perceptions of social support may not be similar across chronic illness populations. In models of family adaptation, social support has been proposed as a mediator of stress, with high levels of parental stress associated with less social support, which is, in turn, associated with higher levels of parental distress and depression (Barakat & Linney, 1992; Quittner & DiGirolamo, 1998; Thompson et al., 1992). Support for this model has been found in studies involving families of children with various chronic illnesses. Research conducted by Barakat and Linney (1992) evaluated the effect of social support on both maternal and child adjustment in families of children with spina bifida. Within their model of parent and child adjustment, Barakat and Linney propose that social support, as well as other psychosocial factors, mediates the relationship between chronic illness-related stress and outcomes, including parent and child adjustment. They found that larger support networks, increased proportion of family members in that network, and greater satisfaction with perceived support were related to improved maternal psychological adjustment. Furthermore, in a study involving mothers of deaf children, Quittner and colleagues (1990) found that higher levels of general and disease-specific parenting stress were associated with lower levels of perceived social support, which mediated the relationship between parental stress and depression. The utility of this model of parental adaptation warrants further study with families of children with CF. There may be similar mechanisms by which social support functions in these families. By evaluating social support’s distinctive pathway in this population, and providing additional support for its importance within models of parental

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10 adaptation, a greater understanding of the variability in the adjustment of parents of children with CF will be gained. In addition, interventions focused on enhancing the social support networks of parents of children with chronic illnesses have shown promise for reducing mental health symptoms (Ireys, Sills, Kolodner, & Walsh, 1996). The purpose of the current study was to apply this contextual framework to parents of children with cystic fibrosis (CF). Cystic fibrosis was chosen because it exemplifies a chronic illness that involves a complex and time-consuming daily medical regimen that affects the physical and psychological development of the child and the functioning of the family (Cowen et al., 1985; Orenstein, 1997; Thompson, Gustafson, Gil, Godfrey, & Murphy, 1998). The Current Study CF is a progressive, terminal, genetic disorder that has detrimental effects on the respiratory, digestive, and reproductive systems. It is characterized by the abnormal exchange of salt and water across cell membranes, which adversely affects many systems, but primarily the lungs and pancreas. The majority of the morbidity and mortality of CF is associated with the cycle of infections and scarring of the lungs (Orenstein, Rosenstein, & Stern, 2000). The daily treatment regimen includes airway clearance, nebulized medications, increased calorie and fat intake, and the use of pancreatic enzymes. Tremendous gains have been made in the diagnosis and treatment of CF over the past 30 years, which has lead to an increase in life expectancy, from adolescence to early adulthood. However, during early childhood, parents play a vital role in managing treatments and protecting the physical well being of the child with cystic fibrosis as they progress towards adolescence and adulthood.

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11 In sum, cystic fibrosis presents a unique set of challenges to which parents must adapt. Frequent physician visits, a rigorous treatment regimen, and increased financial strain are representative of the issues that families of children with CF deal with on a daily basis, which may become overwhelming to parents (Quittner et al., 1992; Quittner et al., 1998). Previous research has shown that mothers of children with CF experience high levels of stress related to CF care and they often have concerns about how caretaking demands affect their marital relationship, sibling well-being, and family functioning (Ievers & Drotar, 1996). The current study seeks to assess the concerns of parents of children with CF. Additional evidence to support the previously researched relationship between parental stress and depression will also be sought. Importantly, in the process, this study hopes to provide support for research which has shown that using a disease-specific, contextual model to study parental adaptation to chronic illness is crucial to understanding adaptation and to the formulation of effective interventions to ensure normal family functioning. The current study utilized a contextual approach to measure parenting stress and to address the relationship between stress and depression in primary caretakers of children with CF. Specifically: (1) Parents of children with CF were hypothesized to report elevated levels of stress and depression in comparison to normative data. (2) It was hypothesized that illness-related tasks would be rated as more stressful than normal parenting tasks. (3) It was also hypothesized that higher levels of stress would be associated with higher levels of depression The current study also compared generic and disease-specific stress in their contribution to parental adjustment. (4) The current study

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12 hypothesized that context-specific stress would account for more of the variance in depression than generic stress. Given the research that has documented developmental patterns of maternal adjustment (Walker et al., 1989), there was expected to be a developmental pattern of stress reported by caregivers in the current study, with the child’s entry into school hypothesized to lower parental stress levels. (5) Caregivers of younger children were predicted to report higher levels of stress and depression than caregivers of older children. The current study sought to explore the importance of social support and its relationship to parental adjustment in caregivers of children with CF. The current study examined the mediating effect of social support. (6) It was predicted that social support would mediate the relationship between parental stress and depression. Increased parental stress would be associated with lower perceived social support, which, in turn would be associated with increased depression.

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CHAPTER 2 METHOD Participants The sample for the current study included 30 parents of children with CF. This study was conducted as part of a larger longitudinal evaluation of an intervention to improve adherence to medical regimens in children with CF and their families. Participants were recruited from two CF centers in the southeast. Families were included in the study if they met the following criteria: (a) had a child with a proven diagnosis of CF at least one year prior to enrollment, (b) child was 1 to 11 years of age, (c) available parent was the primary caretaker, and (d) parent expressed a willingness to participate and comply with study procedures. Thirty-six potential participants received information letters and brochures explaining the study in the mail. Participants were contacted during routine clinic visits, while waiting for their appointments, to sign the informed consent. Six eligible participants were not included for the following reasons: (a) five parents declined to participate (e.g., too busy, moving), and (b) one participant did not complete the initial assessment. The demographic characteristics of the sample are presented in Table 1. Eighty-six percent of the primary caretakers included in the study were mothers, 6.7% were fathers, and 6.7% were grandmothers. The mean age of parents was 37.1, ranging from 21.6 46.2 years of age. The majority of primary caretakers were Caucasian, although a small 13

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14 number of minorities were included in the study (n = 2). Seventy percent of primary caretakers were married and median household income was reported to be in the $30,000 $39,000 range. Table 1 Primary Caregiver Demographic Data (n = 29)* n M SD Range % Caregiver Age Mothers 26 34.8 7.7 21.6 46.2 86.7 Fathers 2 39.9 4.7 33.1 43.3 6.7 Grandmothers 2 59.9 1.3 57.9 61.4 6.7 Race Caucasian 28 93.3 African-American 1 3.3 Hispanic 1 3.3 Marital Status Married 21 70 Separated 2 6.7 Divorced 3 10 Single/never married 3 10 Note : *Demographic information for one participant had not been collected at time of analysis. The demographic characteristics of children are presented in Table 2. Mean age of children in this sample was 6.2 years and slightly more than half of the sample was female (53%). The average time since diagnosis was 5.4 years. Illness severity, as measured by Forced Expiratory Volume in 1 second (FEV 1 % predicted), ranged from

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15 36% to 114%, with 59% of children in the mild disease category ( 70% predicted). Tests of pulmonary functioning are not performed on children less than 5 years of age; therefore disease severity was not available for 13 children. Table 2 Child Demographic Data (n = 30) n M SD Range % Child Age 30 6.2 3.4 1 11 Child Gender Girls 16 53.3 Boys 14 46.7 FEV 1 % Predicted 17 75.2% 36% 114% Mild ( 70) 10 58.8 Moderate (40 69.9) 5 29.4 Severe ( 39.9) 2 11.8 *Time since diagnosis (years) 29 5.5 3.7 1 11 Note : *Demographic information for one participant had not been collected at time of analysis. Procedure The protocol and consent forms were approved by the Institutional Review Board at the University of Florida Health Science Center and Nemours Research Program-Florida Institutional Review Board. Parents who met the criteria were sent a letter explaining the study, contacted by telephone, and invited to participate by the nurse coordinator prior to their clinic visit. During a routine clinic visit, eligible participants were approached by a member of the research team to answer questions about the study

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16 and obtain consent. Parents who gave written informed consent completed study questionnaires, which included a demographic information form, as well as standardized measures of global and illness-specific parenting stress, social support, and depression. Participants also completed a standardized adherence interview and measures of CF knowledge as part of the larger, longitudinal study. After completing these measures, pulmonary functioning tests were conducted to assess the health status of the child. Participants were offered $20 for their time and effort. Measures Parenting Stress Index The Parenting Stress Index is a 126-item global parenting stress questionnaire (Abidin, 1983). This questionnaire was designed to identify sources of stress in parent-child subsystems in three areas: Child Domain, Parent Domain, and Life Stress Domain. For the current study, selected subscales from the Parent (Restriction of Role, Sense of Competence) and Child Domain (Adaptability, Demandingness) were used to assess parenting stress. Selected scales from the Parent Domain, such as Maternal Depression, were not used because of the potential confounding of these measures with the outcome variable (i.e., parental depression). The Life Stress Domain was also omitted from the study since prior research has shown that chronic stress accounts for more variance in parental psychological adjustment than the occurrence of life events (Quittner, Glueckauf, & Jackson, 1990). The PSI has demonstrated acceptable internal consistency coefficients, with an alpha of .90 for the Child Domain and .93 for the Parent Domain and adequate test-retest reliability ranging from .65 to .96 for a 3 to 4 week interval (Abidin, 1990).

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17 Family Stress Scale The Family Stress Scale (FSS) is an illness-specific stress measure (Quittner et al., 1990), consisting of 14 items assessing stressors specific to raising a child with CF (e.g., taking medications, doing airway clearance), as well as more common parenting tasks (e.g., behavior problems, following routines). Each item is rated on a 5-point scale ranging from 1 (not at all stressful) to 5 (extremely stressful). Scores are obtained by averaging ratings across items. An internal consistency coefficient of .84 for mothers of children with cystic fibrosis has been reported (Quittner et al., 1992). Norbeck Social Support Questionnaire The Norbeck Social Support Questionnaire (NSSQ) consists of eight items that assess perceived social support on three scales, (e.g., Affect, Affirmation, and Aid) and several components of network structure (Norbeck et al., 1983). Providers of support are listed and then ratings of the amount of support provided by each person are obtained. Ratings of support are endorsed on a 5-point scale from 1 = not at all to 5 = a great deal. Internal consistency estimates have ranged from .69 to .98. Center for Epidemiological Studies Depression Scale The Center for Epidemiological Studies Depression Scale (CES-D) is a 20-item scale used to measure current levels of depressive symptoms and mood in the general population (Radloff, 1977). Each item is rated on a 4-point scale ranging from rarely or none of the time (0) to most of the time (4). Internal consistency coefficients of .84 to .90 have been reported (e.g., Hann, Winter, & Jacobsen, 1999). Statistical Analyses Descriptive statistics (means and standard deviations) were used to characterize the demographic variables, parenting stress, social support, and depression scores.

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18 Descriptive statistics were also used to compare the parenting stress and depression scores of participants in the current study with those of a normative sample. Pearson r correlations were conducted to determine the relationship between levels of global parenting stress, disease-specific parenting stress, and depression. A paired t-test was used to compare ratings of CF-related items to ratings of non-CF related items on the FSS. Independent samples t-tests were used to compare the global stress, disease-specific stress, social support, and depression scores of mothers of younger (ages 1 to 5) versus older children (ages 6 to 11). A regression analysis was used to evaluate the variance in depression scores accounted for by global (PSI) and context-specific stress (FSS). Barron & Kenny’s test of mediation (1986) was used to assess whether social support mediated the relationship between parenting stress and depression. This included correlations and a hierarchical regression to determine the fitness of the proposed model. Significance was identified as p .05.

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CHAPTER 3 RESULTS Levels of Parenting Stress and Depression Clinically elevated levels of global and disease-specific parenting stress were expected in analyses comparing the CF and normative samples. Examination of the means and standard deviations of the current sample indicated that both the Demandingness and Adaptability subscales on the Child Domain of the PSI were at or above the 75 th percentile, which is the clinical cutoff (see Table 3). Specifically, primary caretakers in the current study rated their children as more demanding and less adaptable than the norms provided for the PSI. On the Restriction of Role and Sense of Competence subscales of the Parent Domain, scores fell within the normal range in comparison to norms. Primary caretakers reported a moderate degree of stress on the FSS, which measures the stress of illness-specific and normal parenting tasks (see Table 3). Primary caretakers in the current study scored, on average, 1 standard deviation above the mean for a sample of parents of healthy children (Quittner et al., 1990). In comparing average FSS scores for the current sample of primary caretakers, to those of parents of children newly diagnosed with CF (within 6 months of diagnosis), scores for the current sample were one-half a standard deviation lower, suggesting that the period following initial diagnosis is not as highly stressful for parents as the period immediately following the diagnosis (Quittner et al., 1992). 19

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20 Primary caretakers in this sample were expected to report higher levels of depression than community-based norms. Using the standard clinical cutoff of 16, nearly one-fourth of the sample (23%) of primary caretakers met criteria for depressive symptomatology (M = 11.2, SD = 7.9). Table 3 Means and SDs for the Family Stress Scale, PSI, and CES-D (n=30) Scales M SD Family Stress Scale 1.9 0.6 CES-D 11.2 7.9 Parenting Stress Index Parent Domain Sense of Competence 31.1 6.5 Restriction of Role 19.4 5.5 Child Domain *Adaptability 28.9 8.2 *Demandingness 23.5 5.6 Note : *Scores above the clinical cut-off, 75 th percentile. Ratings of Illness-specific versus Normal Parenting Tasks The current study hypothesized that tasks related to CF care would be rated as more stressful on the FSS than tasks considered part of the normal parenting role. Tasks rated as most stressful by this sample were: ”financial responsibilities,” “doing treatments (aerosols, airway clearance),” “eating more calories,” “discipline,” and “following routines (mealtimes, bedtime).” Tasks rated as least stressful included, “child’s

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21 relationship with other children,” “relationships with parent’s friends or extended family,” “preparing and giving medications,” and “outings in the community.” Items on the FSS were divided into those specifically related to CF (7 items), and those related to general parenting (8 items). A paired samples t-test indicated that the CF–specific items were rated as significantly more stressful than the non-CF items, t (29) = -2.43, p < .05. Relationship between Global versus Contextual Parenting Stress and Depression Both the global and context-specific measures of parenting stress were expected to be significantly associated with scores on the depression measure (see Table 4). On the Child Domain of the PSI, the Demandingness (r = .45, p < .05) and Adaptability subscales (r = .43, p < .05) were significantly correlated with depression. Primary caretakers who rated their children as more demanding and less adaptable reported more symptoms of depression. The Sense of Competence subscale of the Parent Domain of the PSI was also significantly correlated with depression, r = .46, p < .05. Primary caretakers with a lower sense of competence in their parenting role had higher levels of depression. The Restriction of Role subscale of the PSI Parent Domain (r = .25, p > .05) and the contextual measure of CF-specific parenting stress (FSS) were not significantly correlated with depression, (r = .28, p > .05) although the correlations were in the right direction. Contextual stress was expected to account for unique variance in depression scores, once stress on the global measure was partialled out. First, selected subscales of the PSI were combined to produce an average score, and this score was entered into the regression model. Results indicated that global stress accounted for a significant amount of variance in depression ( = .51, p < .05). Next, scores on the FSS were entered,

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22 however they did not account for additional variance after controlling for global stressors ( = -.11, p > .05). Table 4 Correlations for Stress and Depression (n=30) 1 2 3 4 5 6 1. FSS -2. CES-D .28 -3. PSISense of Competency (Parent) .45* .46** -4. PSI – Restriction of Role (Parent) .55** .25 .36 -5. PSI – Adaptability (Child) .57** .43* .46* .56** -6. PSI – Demandingness (Child) .52** .45* .36 .51** .74** -Note : *p < .05 **p < .01. Developmental Differences in Levels of Parenting stress and Depression The child’s developmental age was also expected to be related to maternal stress and depression (see Table 5). Specifically, primary caretakers of younger children were expected to report higher levels of parenting stress and depression than primary caretakers of older children. Results, however, indicated no significant differences between primary caretakers of younger and older children on the global (Sense of Competence, t (29) = -.77, p > .05, Restriction of Role, t (29) = -1.15, p > .05, Adaptability, t (29) = -1.14, p > .05), disease-specific measures of stress (FSS, t (29) = -.77, p > .05), or depression measures, (t (29) = .55, p > .05). Social Support and Maternal Adaptation The mediating effect of social support was evaluated in preliminary analyses, using correlations and regression models to examine the relationship among maternal stress,

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23 social support, and depression. The current study predicted that perceived social support would mediate the relationship between parenting stress and depression. Specifically, parenting stress was expected to be associated with lower perceptions of social support, which, in turn, would lead to higher levels of depression. However, because of the small sample size and cross-sectional nature of these data, tests of the proposed mediating effects of social support are considered exploratory. Table 5 Differences in the relationship between stress and depression by developmental period Measures Younger Children (1-5 yrs) n = 13 Older Children (6-11 yrs) n=17 M SD M SD df t FSS 1.8 0.6 2.0 0.6 28 -0.70 CES-D 12.2 9.6 10.5 6.6 28 0.55 PSISense of Competency (Parent) 30.3 5.9 31.6 7.0 28 -0.56 PSI – Restriction of Role (Parent) 17.7 4.3 20.5 6.1 27 -1.38 PSI – Adaptability (Child) 27.2 6.7 30.1 9.2 27 -0.95 PSI – Demandingness (Child) 22.8 6.2 24.1 5.2 28 -0.58 According to Baron and Kenney (1986), four conditions must be met for a mediating relationship to be established. First, the predictor must be significantly associated with the outcome variable. Second, the predictor variable must be significantly associated with the mediator. Third, the mediator must be significantly associated with the outcome variable. Finally, to establish the significance of the mediator, the relationship between the predictor and the outcome variable must be reduced after

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24 entering the mediator into the equation. These four conditions are tested using three separate regression analyses. First, a significant positive association was found between scores on the Adaptability subscale of the PSI and the depression measure, with higher stress scores associated with higher depression scores (see Table 3). Next, scores on Adaptability were also significantly correlated with lower levels of perceived emotional support (as measured by the Affect component of the NSSQ), r = -.38, p < .05. Third, scores on perceived emotional support were significantly associated with depression, r = -.53, p < .05. Further analyses were conducted to determine whether social support mediated the stress and depression relationship. A hierarchical regression was then conducted to test for mediation. On the first step, Adaptability was entered into the model and accounted for 17% of the variance in maternal depression ( = .43) (see Table 6). Next, emotional support was entered into the regression model and was also found to explain a significant portion of the variance ( = -.44). Further, once emotional support was included in the model, the Adaptability subscale was no long a significant predictor of depression ( = .25, p > .05). Thus, perceived emotional support appeared to be a partial mediator of stress for these caretakers providing preliminary evidence that some of the relationship between parenting stress and depression can be accounted for by perceived emotional support. A similar pattern of results was found for the Demandingness subscale of the PSI. Higher scores on the Demandingness subscale of the PSI were significantly associated with higher levels of depression (r = .45, p < .05) (as shown in Table 3), and primary caretakers who rated their children as more demanding reported significantly lower levels

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25 of perceived emotional support, r = -.42, p < .05. As indicated earlier, lower perceived emotional support was significantly correlated with higher levels of depression. Additional analyses were conducted to evaluate social support as a mediator. Table 6 Hierarchical Regression Analysis Summary for Adaptability and Social Support Predicting Depression (n=28) Variable B SEB R 2 R 2 Step 1 0.14* PSI – Adaptability (Child) 0.40 0.17 0.42* Step 2 0.29** 0.15 PSI – Adaptability (Child) 0.23 0.17 0.25 NSSQ – Affect -4.17 1.64 -0.45* Note. *p < .05, **p < .01. A hierarchical regression was conducted to test mediating effects, with Demandingness from the PSI entered into the regression model first (see Table 7). Demandingness accounted for a significant amount (20%) of variance in maternal depression ( = .43). Next, emotional support was entered into the regression model, and was also significantly related to depression scores ( = -.41). However, once social support was in the model, Demandingness was no longer a significant predictor of depression ( = .25, p >.05). Emotional support partially mediated the relationship between the child’s demandingness and maternal depression. Thus, two analyses supported the hypothesis that primary caretakers who rate their child as less adaptable and more demanding, have less emotional support, and also report higher levels of depression. No other mediating relationships were found.

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26 Note 1. Power analyses were conducted, with estimates ranging from .19 to .70, which indicated that the study is not currently powered adequately to test the hypotheses. Data are continuing to be collected and these analyses will be rerun with a larger sample. Table 7 Hierarchical Regression Analysis Summary for Demandingness and Social Support Predicting (n=28) Variable B SEB R 2 R 2 Step 1 0.16* PSI – Demandingness (Child) 0.60 0.24 0.44* Step 2 0.28** 0.12 PSI – Demandingness (Child) 0.35 0.25 0.26 NSSQ – Affect -3.84 1.64 -0.41* Note. *p < .05, **p < .01.

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CHAPTER 4 DISCUSSION The central purpose of the current study was to evaluate the extent of parenting stress and depression in a sample of parents caring for a child with CF, using both global and context-specific measures. Results of the current study suggested that caretakers of children with CF are experiencing significant levels of stress and depression in comparison to parents of healthy children. Caregivers in this sample experienced more stress than parents in the PSI normative sample, rating their children as more demanding and less adaptable than did mothers of healthy children. In addition, slightly greater context-specific stress was experienced by mothers in the current study than a prior normative sample of parents (Quittner, et al., 1990). Not surprisingly, these caregivers reported less context-specific stress than mothers of children who had been recently diagnosed with CF (Quittner et al., 1992). This may indicate that the initial diagnosis phase involves the most dramatic elevations in stress which decrease as parents become more familiar with caregiving challenges associated with caring for a child with CF. On average, it did not appear that caregivers in this sample experienced greater stress associated with restrictions in their parenting role or their sense of competence than parents in the PSI normative sample. These findings suggest that all facets of parenting are not affected by having a child with CF, but rather, particular areas of the parent-child subsystem may be altered when caring for a child with a chronic illness. 27

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28 In the present study, parents rated tasks related to CF care as more stressful than normal parenting tasks, indicating that a significant amount of stress experienced by caregivers is directly related to the tasks of managing this disease. These findings converge with those of other studies that have identified context-specific stressors as most challenging for parents (Quittner et al., 1992; Walker et al., 1989). These results also have important implications for the development of parenting interventions, which could target the specific tasks parents have rated as most stressful, such as doing airway clearance treatments. Support was also found for the hypothesis that caregivers are at risk for depression. Nearly one-quarter of the caregivers in this sample reported depressive symptomatology greater than the clinical cut-off. This demonstrates the importance of screening caregivers for potential psychological distress and offering effective interventions and support. Moderate support was found for the hypothesized association between global and context-specific stress and depression. Specifically, several global measures of parenting stress (e.g., Demandingness, Adaptability, and Sense of Competence) were significantly related to depression. In contrast, the ratings of context-specific stress were not significantly associated with maternal depression, although there was a trend towards the hypothesized association between context-specific stress and higher levels of depression. Considering the small sample size for this study, these findings should be considered preliminary. The relationships between global and context-specific measures should be retested in a larger sample.

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29 Support was not found for the hypothesis that context-specific stress would account for unique variance in depression scores after controlling for the effects of global stressors. Results showed that context-specific stress did not account for additional variance in levels of depression once the global stress measures were considered. This finding is contrary to prior research, which demonstrated a clear relationship between context-specific stress and depression (Quittner et al., 1992). One factor that may have contributed to this nonsignificant finding in the current study was the study’s small sample size. The size of the current study’s sample may not have been large enough to obtain a full range of responses that accurately reflect the stressors experienced by caregivers of children with CF and sufficient power to detect the relationship between context-specific stress and depression. Another factor that may have contributed to these findings was the overlap between questions on the global and context-specific measures. For example, PSI statements such as “my child has had more health problems than I expected” may have been viewed in an illness-specific manner by caretakers in the present study. They may, in fact, have viewed their child’s current health status positively in comparison to the bleak health outlook related at diagnosis, which was reflected by lower levels of agreement with this statement by caregivers. Future analyses should conduct a factor analysis, maximally separating the two types of stress. There were no developmental differences found in levels of stress and depression in caregivers of older versus younger children. The current study hypothesized that caregivers of older children would report less stress and depression because the child’s entry into school would decrease levels of stress, and thus lower depression. However, results from this study suggest that entry into school did not substantially relieve the

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30 caregiving burden of these families. Greater differences might be found by comparing caregiving stress during the preschool and adolescence periods (Walker et al, 1987) rather than the school age period. Evidence was found for mediating role of social support. Specifically, caregivers with high levels of global stress related to the adaptability and demandingness of the child, reported lower levels of perceived emotional support, which were related to higher levels of depression. This finding indicates a particularly strong association among these variables considering the study’s small sample size. Future research should focus on ways reduce caregiver’s levels of stress while also providing increased perceptions of support. Research has found tentative evidence that social support interventions that focus on mentorship between mothers of older children with juvenile rheumatoid arthritis (JRA) and mothers of young children with JRA leads to better adjustment (Ireys, Sills, Kolodner, & Walsh, 1996). Future research could examine how the psychological adjustment of mothers of children with CF could be improved by matching them with mothers of older children, who could provide emotional support by listening their concerns and communicating an understanding of their special challenges and concerns. There are several limitations that should be considered. The findings of the current study should be considered exploratory due to the small sample of participants. Data is now being collected at a second site, which should greatly facilitate the targeted goal of 100 families. Adding a second site will also expand our primarily rural families in the current study to include parents from urban settings who may provide a different perspective on caregiving. This will greatly enhance the generalizability of the findings. The current study’s cross-sectional design could not establish the temporal ordering of

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31 variables in the mediating model. It is possible that parents who were more depressed found their caregiving responsibilities more stressful. A longitudinal design would assist in establishing the causal relationships among the variables. However, it should be noted that causality is best determined using an experimental design that alters one variable in the model, (e.g., parenting stress) and then evaluates its effects on the others (e.g., social support and depression). Finally, future studies should attempt to include fathers, who likely share some of the caregiving responsibilities, and may also be important sources of emotional support. Previous research has indicated that the division of caretaking responsibilities is inequitable in families of children with CF and can lead to significant marital strain and dissatisfaction (Quittner et al., 1998). The inclusion of fathers could facilitate a better understanding of these processes of adaptation, potentially leading to interventions that are effective in improving the functioning of the entire family system.

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33 Hodgkinson, R., & Lester, H. (2002). Stresses and coping strategies of mothers living with a child with cystic fibrosis: implications for nursing professionals. Journal of Advanced Nursing, 39(4), 377-383. Holden, E. W., Chmielewski, D., Nelson, C. C., Kager, V. A., & Foltz, L. (1997). Controlling for general and disease-specific effects in child and family adjustment to chronic childhood illness. Journal of Pediatric Psychology, 22(1), 15-27. Ireys, H. T., Sills, E. M., Kolodner, K. B., & Walsh, B. B. (1996). A social support intervention for parents of children with juvenile rheumatoid arthritis: Results of a randomized trial. Journal of Pediatric Psychology, 21(5), 633-641. Ivers, C. E., & Drotar, D. (1996). Family and parental functioning in cystic fibrosis Review Article. Journal of Developmental and Behavioral Pediatrics, 17(1), 48-55. Jessop, D. J., Riessman, C. K., & Stein, R. E. (1988). Chronic childhood illness and maternal mental health. Journal of Developmental and Behavioral Pediatrics, 9(3), 147-155. Kovacs, M., Iyengar, S., Goldston, D., & Obrosky, D. S. (1990). Psychological functioning among mothers of children with insulin-dependent diabetes mellitus: A longitudinal study. Journal of Consulting and Clinical Psychology, 58(2), 189195. Mullins, L. J., Chaney, J. M., Hartman, V. L., Olson, R. A., Youll, L. K., Reyes, S., & Blackett, P. (1995). Child and maternal adaptation to cystic fibrosis and insulindependent diabetes mellitus: Differential patterns across disease states. Journal of Pediatric Psychology, 20(2), 173-186. Newacheck, P.W., McManus, M. Fox, H.B., Hung, Y., Halfon, N. (2000). Access to health care for children with special health care needs. Pediatrics, 105 (4), 760-766. Newacheck, P., & Stoddard, J. (1994). Prevalence and impact of multiple childhood chronic illnesses. Journal of Pediatrics, 124(1), 40-48. Norbeck, J. S., Lindsey, A. M., & Carrieri, V. L. (1983). Further development of the Norbeck Social Support Questionnaire: Normative data and validity testing. Nursing Research, 32, 4-9. Orenstein, D. M. (1997). Cystic Fibrosis: A Guide for Patient and Family. Philadelphia, PA: Lippincott & Raven. Orenstein, D. M., Rosenstein, B. J., & Stern, R. C. (2000). Cystic Fibrosis Medical Care. Philadelphia, PA: Lippincott Williams & Wilkins.

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34 Pipp-Siegel, S., Sedey, A. L., & Yoshinaga-Itano, C. (2002). Predictors of parental stress in mothers of young children with hearing loss. Journal of Deaf Studies and Education, 7(1), 1-17. Quittner, A. L. (2000). Improving assessment in child clinical and pediatric psychology: Establishing links to process and functional outcomes. In D. Drotar (Eds.), Handbook of research methods in pediatric and child clinical psychology. (pp. 119-142). New York: Plenum Publishing Corporation. Quittner, A. L., & DiGirolamo, A. M. (1998). Family adaptation to childhood disability and illness. In R. T. Ammerman & J. V. Campo, (Eds.), Handbook of pediatric psychology and psychiatry, Vol. II (pp. 70-102). Boston: Allyn & Bacon. Quittner, A. L., DiGirolamo, A. M., Michel, M., & Eigen, H. (1992). Parental response to cystic fibrosis: A contextual analysis of the diagnosis phase. Journal of Pediatric Psychology, 17(6), 683-704. Quittner, A. L., Espelage, D. L., Opipari, L. C., Carter, B., Eid, N., & Eigen, H. (1998). Role strain in couples with and without a child with a chronic illness: Associations with marital satisfaction, intimacy, and daily mood. Health Psychology, 17(2), 112-124. Quittner, A. L., Glueckauf, R. L., & Jackson, D. N. (1990). Chronic parenting stress: Moderating versus mediating effects of social support. Journal of Personality and Social Psychology, 59(6), 1266-1278. Quittner, A. L., & Opipari, L. C. (1994). Differential treatment of siblings: Interview and diary analyses comparing two family contexts. Child Development, 65(3), 800814. Quittner, A. L., Opipari, L. C., & Regoli, M. (1992). The impact of caregiving and role strain on family life: Comparisons between mothers of children with cystic fibrosis and matched controls. Rehabilitation Psychology, 37(4), 275-290. Radloff, S. R. (1977). The CES-D scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 1(3), 385-401. Schulz, R., & Quittner, A. L. (1998). Caregiving for children and adults with chronic conditions: Introduction to the special issue. Health Psychology, 17(2), 107-111. Silver, E. J., Bauman, L. J., & Weiss, E. S. (1999). Perceived role restriction and depressive symptoms in mothers of children with chronic health conditions. Journal of Developmental and Behavioral Pediatrics, 20(5), 362-369.

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35 Thompson, R. J., Jr., Gil, K. M., Gustafson, K. E., George, L. K., Keith, B. R., Spock, A., & Kinney, T. R. (1994). Stability and change in the psychological adjustment of mothers of children and adolescents with cystic fibrosis and sickle cell disease. Journal of Pediatric Psychology, 19(2), 171-188. Thompson, R. J., Jr., Gustafson, K. E., Gil, K. M., Godfrey, J., & Murphy, L. M. (1998). Illness-specific patterns of psychological adjustment and cognitive adaptational processes in children with cystic fibrosis and sickle cell disease. Journal of Clinical Psychology, 54(1), 121-128. Thompson, R. J., Jr., Gustafson, K. E., Hamlett, K. W., & Spock, A. (1992). Stress, coping, and family functioning in the psychological adjustment of mothers of children and adolescents with cystic fibrosis. Journal of Pediatric Psychology, 17(5), 573-585. Walker, L. S., Ford, M. B., & Donald, W. D. (1987). Cystic fibrosis and family stress: effects of age and severity of illness. Pediatrics, 79(2), 239-245. Walker, L. S., Ortiz-Valdes, J. A., & Newbrough, J. R. (1989). The role of maternal employment and depression in the psychological adjustment of chronically-ill, mentally retarded, and well children. Journal of Pediatric Psychology, 14(3), 357-370. Walker, L. S., Van Slyke, D. A., & Newbrough, J. R. (1992). Family resources and stress: A comparison of families of children with cystic fibrosis, diabetes, and mental retardation. Journal of Pediatric Psychology, 17(3), 327-343. Wallander, J. L., Pitt, L. C., & Mellins, C. A. (1990). Child functional independence and maternal psychosocial stress as risk factors threatening adaptation in mothers of physically or sensorially handicapped children. Journal of Consulting and Clinical Psychology, 58(6), 818-824. Wallander, J. L., Varni, J. W., Babani, L., Banis, H. T., DeHann, C. B., & Wilcox, K. T. (1989). Disability parameters, chronic strain, and adaptation of physically handicapped children and their mothers. Journal of Pediatric Psychology, 14(1), 23-42. Wallander, J. L., & Venters, T. L. (1995). Perceived role restriction and adjustment of mothers of children with chronic physical disability. Journal of Pediatric Psychology, 20(5), 619-632.

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BIOGRAPHICAL SKETCH Shalonda K. Slater received her Bachelor of Science degree from Florida Agricultural and Mechanical University in 2001. Upon receiving her bachelor’s degree in psychology, she enrolled in the Department of Clinical and Health Psychology doctoral program at the University of Florida. She is concentrating her studies in pediatric psychology. 36