1 TRAUMATIC STRESS SYMPTOMS ACROSS PEDIATRIC CHRONIC ILLNESS By LISA M. INGERSKI 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 2008
2 Lisa M. Ingerski
3 To my family for all their support.
4 ACKNOWLEDGMENTS I would like to thank the chair of m y committee, David M. Ja nicke, Ph.D., for his support and mentorship. I would also like to thank the members of Dr. Janickes lab, who offered their time and assistance; and Kimberly Shaw, Ph.D. and the other professionals at each of the clinics who helped make recruitment for this study possi ble. Lastly, I would like to acknowledge the other members of my committee: Stephen R. Boggs, Ph.D., Fonda Davis Eyler, Ph.D., and Michael E. Robinson, Ph.D. Funding for graduate training was provided by th e National Institute of Child Health and Human Development (NICHD) through a pre-doctor al fellowship award titled Training in Treatment Outcome Research for Child Populati ons. This study was also supported by a grant from the Center for Pediatric Psychology and Family Studies in the Department of Clinical and Health Psychology at the Un iversity of Florida.
5 TABLE OF CONTENTS page ACKNOWLEDGMENTS ............................................................................................................... 4LIST OF TABLES ...........................................................................................................................7ABSTRACT ...................................................................................................................... ...............8 CHAP TER 1 INTRODUCTION .................................................................................................................. 10Traumatic Stress .............................................................................................................. .......13Traumatic Stress across Pedi atric Chronic Illness .................................................................. 16Pediatric Transplant .........................................................................................................16Pediatric HIV ...................................................................................................................19Pediatric Sickle Cell Disease ...........................................................................................22Differences in Traumatic Stress Symptoms across Illness Groups ................................. 23Differences between Parent and Child Report of Traumatic Stress ....................................... 25Predictors of Traumatic Stress ................................................................................................ 27Overview of Current Literature ..............................................................................................29Current Study Aims and Hypotheses ...................................................................................... 30Primary Aims .................................................................................................................. .30Aim 1: To examine traumatic stress symptoms across disease groups .................... 30Aim 2: To compare parent-proxy-report and youth self-report of traumatic stress symptoms .................................................................................................... 30Aim 3: To determine possible predictors of childrens posttraumatic stress symptoms .............................................................................................................. 30Secondary Aims ............................................................................................................... 31Aim 4: To examine the quality of life of pre-transplant candidates ......................... 31Aim 5: To examine the family functioning of pre-transplant candidates families ................................................................................................................. 312 METHOD ........................................................................................................................ .......32Participants .................................................................................................................. ...........32Procedures .................................................................................................................... ...........32Pediatric Transplant .........................................................................................................33Pediatric Sickle Cell Disease ...........................................................................................33Pediatric HIV ...................................................................................................................33Measures ...................................................................................................................... ...........34Parent Completed Measures ............................................................................................ 34Demographic questionnaire ......................................................................................34Impact of events scale revised ............................................................................... 34Functional disability inventory .................................................................................35Family assessment device ........................................................................................35
6 Parent and Youth Co mpleted Measures .......................................................................... 36UCLA posttraumatic stress disorder reaction index ................................................ 36Pediatric quality of life inventory .............................................................................363 RESULTS ....................................................................................................................... ........41Statistical Analyses .......................................................................................................... .......41Aim 1: To Examine Traumatic Stre ss Symptoms across Disease Groups ......................41Aim 2: To Compare Parent-Proxy-Report and Youth Self-Report of Traumatic Stress Symptoms .......................................................................................................... 42Aim 3: To Determine Possible Predictors of Childrens Posttraumatic Stress Symptoms .................................................................................................................... 42Aims 4 and 5: To Examine the Quality of Life and Family Functioning of PreTransplant Candidates .................................................................................................. 42Preliminary Analyses .......................................................................................................... ....42Primary Aims .................................................................................................................. ........43Aim 1: To Examine Traumatic Stre ss Symptoms across Disease Groups ......................43Youth self-reported traumatic stress ........................................................................ 43Parent-proxy-reported traumatic stress .................................................................... 44Parent self-reported traumatic stress ........................................................................ 45Aim 2: To Compare Parent-Proxy-Report and Youth Self-Report of Traumatic Stress Symptoms .......................................................................................................... 45Aim 3: To Determine Possible Predictors of Childrens Posttraumatic Stress Symptoms .................................................................................................................... 46Child self-reported traumatic stress .......................................................................... 46Parent-proxy-reported traumatic stress .................................................................... 47Parent self-reported traumatic stress ........................................................................ 48Secondary Aims ................................................................................................................ ......49Aim 4: To Examine the Quality of Life of Pre-Transplant Candidates .......................... 49Aim 5: To Examine the Family Functioning of Pre-Transplant Candidates Families ...................................................................................................................... ..504 DISCUSSION .................................................................................................................... .....57Findings Regarding Traumatic Stress .....................................................................................57Findings Regarding Pediatric Transplantation ....................................................................... 62Strengths of the Study ........................................................................................................ .....65Limitations ................................................................................................................... ...........66Implications for Clinical In tervention and Research ..............................................................68Summary ....................................................................................................................... ..........70LIST OF REFERENCES ...............................................................................................................73BIOGRAPHICAL SKETCH .........................................................................................................85
7 LIST OF TABLES Table page 2-1 Demographic characteristic s of child participants ............................................................. 38 2-2 Demographic characteristics of parent participants ........................................................... 39 2-3 Measures completed by participants by disease group ...................................................... 40 3-1 Descriptive statistics am ong variables of interest ..............................................................52 3-2 Correlations between variables of interest across disease groups .....................................52 3-3 Percentage of sample meeting c linical cut-off for PTSD diagnoses .................................. 53 3-4 Differences in child-self-reported and parent proxy-reported traum atic stress ................. 53 3-5 Hierarchical regression analysis predic ting child self-reported traum atic stress ............... 54 3-6 Hierarchical regression analysis predic ting parent-proxy-reported traum atic stress .........54 3-7 Comparison of quality of life of pediatric transplant candidates to the healthy and chronically ill pedi atric populations ...................................................................................55 3-8 Comparison of family functioning of pe diatric transplant candidates to the nonclinical and m edical population ......................................................................................... 55 3-9 Percentage of sample meeting clinical cut-off for unhealthy family functioning .............56 4-1 Comparison of traumatic stress sympto m s to the pediatric oncology population ............. 72
8 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 TRAUMATIC STRESS SYMPTOMS ACROSS PEDIATRIC CHRONIC ILLNESS By Lisa M. Ingerski December 2008 Chair: David M. Janicke Major: Psychology Chronic health conditions impact a significant number of children and adolescents in the United States and are associated with signifi cant psychosocial concerns as youth and their families cope with and adjust to the childs illness. Previous researcher s have recently proposed a framework of traumatic stress to describe the psychological functioning of these families; however, few studies exist that directly compare traumatic stress symptoms across different pediatric disease groups. The current study compared the traumatic stre ss symptoms of youth and their parents across pediatri c transplant, HIV, and sickle cell disease groups and examined possible predictors of traumatic stress symp toms in these populati ons. Researchers found significant differences in traumatic stress sympto ms such that pediatric transplant candidates reported greater symptoms than youth diagnosed with HIV by child self-report. Children reported significantly greater traumatic stress symptoms by self-report than by parent-proxy report of child symptoms across groups. While pa rent traumatic stress sy mptoms did not predict child symptoms, children who experienced longer hospitalizations experienced fewer traumatic stress symptoms by child self-report and children with greater f unctional impairment experienced greater symptoms by parent-proxy report. Additional analyses exploring the functioning of pediatric transp lant candidates found that the quality of life and family
9 functioning of transplant candida tes was lower than that reported in the healthy population, but that their overall functio ning was similar to other chronic illness groups. These findings suggest that a model of traumatic stress addresses the needs of families across pediatric conditions and describes individuals reporting both clinical and sub clin ical levels of distress.
10 CHAPTER 1 INTRODUCTION Although prevalence rates vary, th ere is little disagreem ent that chronic illness affects a significant number of children and adolescents in the United States. Recent national data suggests that up to 19.3% of childre n have special health care need s in the United States (Bethell, Read, Blumberg, & Newacheck, 2008) while an earlier survey sugge sts that as many as 31.5% of adolescents in the United St ates report having one or mo re chronic health conditions (Newacheck, McManus, & Fox 1991). These nu mbers, while impressive, only begin to describe the significant burden families of chroni cally ill youth face. In addition to practical concerns, such as financial difficulties (van Dyck, Kogan, McPherson, Weissman, & Newacheck, 2004) and increased health care usage (Newacheck & Halfon, 1998), youth and their parents also face significant psychosocial difficulties as they cope with a pediatric chronic illness. Recent reviews suggest that both chronically ill youth and their parents experience significant psychosocial symptoms while they cope with and adjust to a particular pediatric disease. While the majority of researchers fi nd that youth and their parents do not experience clinically significant symptomatology, findings c ontinue to show that both groups report a number of symptoms of distre ss and/or impairment (Barlow & Ellard, 2006; Geist, Grdisa, & Otley, 2003; Lewis & Vitulano, 2003; Boekaerts & Rder, 1999). Fo r example, chronically ill children exhibit greater internalizing and exte rnalizing symptoms (Lavigne & Faier-Routman, 1992) and poorer adjustment (Stei n, Westbrook, & Silver, 1998) compar ed to their healthy peers. Similarly, parents report significant stress (McClellan & Cohen, 2007) and mood impairment (Cadman, Rosenbaum, Boyle, & Offord, 1991) across various different pedi atric chronic illness groups. Not surprisingly, these findings are not ju st unidirectional. Often, child and parent
11 psychological functioning is related such that th e functioning of parents affects that of their children (Kazak & Drotar, 1997; Lavigne & Faier-Routman, 1993). The psychosocial difficulties youth and parents face are important not only in themselves, but also because they are related to childre ns adherence to treatm ent following diagnosis (Fotheringham & Sawyer, 1995). While adherence across pediatri c populations is generally poor, usually estimated at approximately 50 % (Winnick, Lucas, Hartman, & Toll, 2005; Osterberg & Blaschke, 2005; Jay, Litt, & Dura nt, 1984), adherence is often worse when youth and their parents are facing psychosocial difficultie s. Previous researchers found that chronically ill childrens psychosocial adjustment was relate d to both functional st atus (Stein & Jessop, 1984) and adherence to medical recommendations (Smith & Shuchman, 2005). In the widely studied pediatric asthma and pediatric diabetes populations, researchers found a number of different psychosocial factors re lated to child adherence. For example, researchers studying these two groups found that child depression, peer victimization, and externalizing behavior problems were significantly related to children s adherence (Storch et al., 2006; Cohen, Lumley, Naar-King, Partridge, & Cakan, 2004). In addition to their own psychosocial difficult ies, youths adherence to treatment is also related to parental adjustment and general family functioning. In a review of the literature, Fiese and Everhart (2006) found that better family functioning (i.e., greater cohesiveness, more positive interactions) was related to improved adherence across various pediatric chronic illnesses. For example, researchers previously provided support for the importance of parent and family factors such as maternal depression in pe diatric asthma (Bartlett et al., 2004) and maternal involvement, family cohesion, and general family func tioning in pediatric diabetes (Lewin et al., 2006; Wiebe et al., 2005; Cohen, Lumle y, Naar-King, Partridge, & Cakan, 2004).
12 While the adherence literature summari zed above clearly documents important relationships between psychosoc ial factors and adherence in pediatric chronic illness populations, researchers have also begun to examine the direct relationship between psychosocial factors and survival. Although the findings ar e mixed, researchers examining pediatric bone marrow recipients found that several factors, including poor family functioning, paternal psychopathology (McConville et al., 1990) and prognos is (Dobkin et al., 2 000) were related to unexpected survival following transplant. Furt hermore, Dobkin and colleagues found that those families with the poorest prognosis also reported the most marital difficulties and, regardless of prognosis, reported more stress than parent s of healthy childre n (Dobkin et al.). While these studies help to illustrate the need for appropriate ps ychological intervention to help youth and families cope with a stressf ul health condition, few well-validated treatment options are currently available in the pedi atric population (Lemanek, Kamps, & Chung, 2001; Barlow & Ellard, 2004; Plante, L obato, & Engel, 2001). Research that examines psychosocial functioning, adherence, and possible interventions in chronically ill pediatric population remains relatively new compared to adult populations and lacks a cohesive fr amework to thoroughly explain youths functioning. Unfortunately, wh ile research in adu lt populations provides promising models to guide investigators wo rk, simply examining the adult chronic illness literature is not enough. Chronically ill childre n and adolescents face unique developmental issues that affect both their medical and ps ychological functioning and make it difficult to directly apply studies of chronica lly ill adults directly to the pe diatric population. Differences in pharmacotherapy and other treatment regimens, physical, cognitive, and emotional development, and differences in adherence rates between pediatric and adult populations each make findings in the adult literature difficult to apply to pedi atric populations (Hsu, 2005; Streisand & Tercyak,
13 1995). Given these important differences and the relative lack of established interventions for pediatric chronic illness, resear chers have advocated for a single theory or framework to guide future research and intervention work in the area of pediatric chronic il lness (Barlow & Ellard, 2004). Traumatic Stress While the previous literature summ arized above demonstrates the relationship of psychosocial functioning to the adherence and surv ival of chronically ill children and adolescents (Smith & Shuchman, 2005), current research lacks a single model or framework from which to understand the impact of pediatric illness on the psychosocial functioning of the family as a whole. Given the current lack of well-established interventions in the pediatric chronic illness population (Lemanek et al., 2001), the use of a comprehensive model of psychosocial functioning may help clinicians to develop approp riate interventions for a variety of pediatric chronic medical conditions. Central to creating a coherent picture of the psychosocial functioning of chronically ill youth and their parents is identifying a single, comprehensive psychological model that adequately addresse s the psychosocial difficulties youth and their families face. It is in this light that the current study sought to examine a model of traumatic stress as an informative framework to describe the psychosocial functioning of youth and parents across three separate chronically ill pediat ric populations. Other researchers have recently used a model of traumatic stress to describe the functioning of pediatric populations and their families. This model of traumatic stress originates in the Posttraumatic Stress Disorder (PTSD) literature. PTSD, a well-established psychiatric diagnosis, is associated with a number of unique emotional and cognitive symptoms that cause significant interference in a pe rsons daily functioning. A di agnosis of PTSD requires the presence of symptoms from three primary sy mptom clusters: (1) re-experiencing a traumatic
14 event, (2) avoidance of stimuli associated with a traumatic event, and (3) persistent arousal symptoms (American Psychiatric Association, 2000). In contrast to the dichotomy inherent in meeting an actual diagnosis of PTSD (i.e., a pers on has the symptoms required for a diagnosis or not), a model of traumatic stress provides for individuals to fall acro ss a continuum of PTSD symptomatology where individuals can exhibit few or many traumatic stress symptoms. This continuum may be especially informative in pediatric populations. Al though only a minority of youth and parents meet the criteria for a diagnosis of PTSD, evidence suggests that up to 80% of children and families experiencing illness or injury experience traumatic stress symptoms (National Traumatic Stress Network, 2005). For example, in a community sample of adolescents, most youth who repor ted experiencing a traumatic ev ent also reported experiencing traumatic stress symptoms (Cuffe et al., 1998). In other words, a model of traumatic stress allows for a cohesive descripti on of the difficulties an individual may face by describing both a person exhibiting few traumatic stress symptoms a nd one meeting diagnostic criteria for PTSD. By providing a continuum of PTSD symptoms, such a model may help to better understand the psychosocial functioning of chronically ill youth and their families. In addition, such a model may allow for a more cohesive and concise description of the difficulties these families face. Although this model has only recently been a pplied to pediatric populations, researchers studying pediatric cancer and pediatric injury ha ve begun to use a framework of traumatic stress to further their understanding of the psychological impact of thes e conditions on youth and their families (Barakat, Alderfer, & Kazak, 2006; Be st, Streisand, Catania, & Kazak, 2001; Kazak; Alderfer, Streisand, et. al., 2004; Kazak, Boev ing, Alderfer, Hwang, & Reilly, 2005; Rourke, Stuber, Hobbie, & Kazak, 1999). Examining PTSD symptoms in parents, researchers found that up to 21% of parents reported symptoms of PT SD consistent with a diagnosis two months
15 following their childrens discharge from the pediatric intens ive care unit (Balluffi et al., 2004). Likewise, examining PTSD symptoms in youth, researchers found that approximately 20% of young adult cancer survivors report sy mptoms consistent with a dia gnosis of PTSD at some point following the end of treatment ( M = 11 years following treatmen t; Hobbie et al., 2000) while almost 70% of children experien ced mild PTSD symptoms imme diately following acute injury (Schreier, Ladakakos, Morabito, Chapman, & Knudson, 2005). In addition to summarizing overall psychologi cal functioning, a framework of traumatic stress also provides a possible means of interv ention in pediatric populations. For example, researchers have outlined a model of preventi on in which traumatic stress symptoms can be addressed within the medical setting (Stuber, Schneider, Kassam-Adams, Kazak, & Saxe, 2006). This model involves three levels: (1) providing general support for families who are coping well with a distressing event (i.e., families where me mbers exhibit no or few PTSD symptoms), (2) providing extra support to families who are dist ressed or at risk for further psychosocial difficulties (i.e., family members report symptoms of PTSD but do not meet diagnostic criteria), and (3) psychological support for the small number of families demonstrating significant distress (i.e., families where a member may meet diagnostic criteria for PTSD). This model meets both the needs of families coping well with a traumatic event or illness as well as families having significant psychosocial difficulties (e.g., traumatic stress). In addition, the model provides suggestions for how medical professionals can appropriately intervene to help improve the psychosocial functioning of families during th at time (Kazak, 2001; Stuber, Shemesh, & Saxe, 2003). This research seems to suggest that a mode l of posttraumatic stre ss accurately portrays families facing significant life events by describing those coping well with the event and those
16 having significant difficulties. While preliminary research in pediatric oncology and injury suggests that a model of traumatic stress is appropri ate, researchers are still faced with the task of determining if the model is also suitable for ot her pediatric populations. While researchers have compared the traumatic stress of these families to families of healthy children, few researchers have compared traumatic stress across disease gr oups. If this model is appropriate, it should adequately describe the functioning of families facing varying pediatric chronic illnesses. This question led directly to the prim ary aim of the current study: to directly compare traumatic stress symptoms across three different pediatric chronic illnesses, transplant, Human Immunodeficiency Virus (HIV), and sickle cell disease. Traumatic Stress across Pediatric Chronic Illness Prelim inary research suggests that ch ildren undergoing transp lantation and those diagnosed with HIV and sickle cell disease each face significant psychosocial difficulties as they progress from diagnosis to treatment. These di fficulties are not only restricted to the youth themselves but may also impact their families. Both youth and their families face numerous challenges as they cope with a complicated chronic illness and, often, uncertain prognosis. Pediatric Transplant Recent advances in m edicine have dramatica lly increased the survival rates of children and adolescents receiving solid organ and bone marrow transplants. Once considered experimental, treatment improvements in surgical procedures and post-operative care, especially in immunosuppressant pharmacotherapy (Tredger, Brown, & Dhawan, 2006), have transformed the outlook for youth receiving transplants and th eir families. Almost 2,000 youth received solid organ transplants in 2005 (2006 OPTN/SRTR Annual Report: Transplant Data 1996-2005, 2006) and over 2000 bone marrow transplants are co mpleted each year (Phipps, 2002). Although three-year survival rates across solid organ transp lants, including heart (7 4-79%), liver (76-80%),
17 and kidney (95-97%) (2006 OPTN/SRTR Annual Re port), and five-year survival rates across bone marrow transplant (47-75%, dependent on donor) are promising (Balduzzi et al., 1995), these prognostic improvements come with cons iderable psychological cost to both the youth receiving the transplants and their families. Life-threat, invasive medical procedures, complex treatment regimens, and living with a chronic illness all combine to create a stressful environment that puts both the youth and their families at risk for significant psychological difficulties (Engle, 2001). Recent research examining the psychosocial functioning of transplant candidates and their parents has begun to document the significan t impact of the transplant process on the psychosocial functioning of transplant candidates and their families. For example, a recent review of youth undergoing lung transplants found that youth e xperienced significant psychological distress including depression, anxiet y, fear, and behavior problems (Brosig, 2003). In addition, researchers found that youth undergoi ng heart transplants e xperienced adjustment difficulties, behavior problems, depression, and anxiety (Todaro, Fennel, Sears, Rodrique, & Roche, 2000) while youth following liver transplant ation exhibited significant behavior problems and poor quality of life (Taylor, Franck, Gibs on, & Dhawan, 2005b). Interestingly, while those children receiving liver transplants reported that th eir quality of life improv ed from preto posttransplant, the researchers also found that thei r quality of life was similar to that of other pediatric chronic illness populat ions (Taylor, Franck, Gibson, & Dhawan, 2005a). It may be that, for families facing a pediatric chronic illness, it is coping with a chro nic illness in general, rather than a specific disease and treatment course, which impacts a childs psychosocial functioning.
18 Not surprisingly, researchers find similar effects on the psychosocial functioning of parents of children undergoing transplant as well as the family as a whole. For example, researchers found that family functioning is significantly related to child psychosocial functioning in pediatric heart transplant (DeMaso, Twente, Spratt, & OBrien, 1995) and pediatric bone marrow transplant (DeMaso, Kelley, Bastardi, O Brien, & Blume, 2004) populations. Although few studies examine the cont ribution of family func tioning in relation to parent outcome variables, resear chers have found that pediatric transplant negatively impacts the psychosocial functioning of parents. Similar to studies of child psychosocial functioning, researchers found that parents also report significant ps ychological distress, both before and after their child undergoes a transplant (Phipps, Duna vant, Lensing, & Rai, 2005). Researchers found that mothers of children undergoing either solid organ or bone marrow transplants experienced significant parenting, financial, care-giving, a nd family stress (Rodrique et al., 1997) while fathers reported significant financ ial stress, but less parenting and family stress, than parents of healthy children (Rodrique et al., 1996). Altho ugh variation exists, the majority of research suggests that parents of youth undergoing both so lid organ and bone marrow transplants face significant psychological difficulties both before and after transplantation. Given these significant difficulties, it is even more interesting that both children and their parents report significan t traumatic stress symptoms. Researchers found that in a sample of 18 youth receiving liver transplants, youth reporte d significant posttraumatic stress symptoms (Walker, Harris, Baker, Kelly, & Houghton, 1999) wh ile in another sample of 19 youth receiving liver transplants, over 30% of youth reported high scores on a measure of posttraumatic symptomatology (Shemesh et al., 2000). Res earchers have also documented that parents experience significant posttraumatic symptoms duri ng the transplant proce ss (Manne et al., 2004;
19 Young et al., 2003). In a study of parents of ch ildren three months to ten years following heart transplant, approximately 40% of parents reported some trau matic stress symptoms and over 20% of parents met clinical criteria for a diagnosis of PTSD (Farley et al., 2007). It seems that both children undergoing a transplant and thei r parents report significant traumatic stress symptoms; however, if these symptoms are unique to the pediatric tr ansplant population in particular or are associated with coping with a pediatric chronic i llness in general is less clear. Pediatric HIV Sim ilar to the pediatric transplantation literat ure, medical advances in pediatric HIV have also dramatically improved the prognosis for ch ildren and adolescents li ving with the virus. Recent data suggest that approximately 2.3 m illion youth under 15 years of age are currently living with HIV (World Health Organization, 2005) In the United States alone, approximately 46,000 youth under 13 years of age are living with HIV or acquired imm unodeficiency syndrome (AIDS; Centers for Disease Control and Preven tion, 2005). Given these numbers, it is not surprising that medical researchers have expende d a great deal of energy in finding new, more successful methods to treat thes e individuals and prol ong their life expectan cy. Although there is still no cure for HIV/AIDS, the advent of antiretroviral medicati ons and combination-drug treatment approaches (Dixon & Cunningham, 20 07; Yeni et al., 2002) have dramatically increased the survival rates of children and adolescents diagnosed with HIV. For example, compared to 2001, an additional 27% of individuals in the United States were living with AIDS in 2005 due to improvements in antiretroviral treatment (Centers for Disease Control and Prevention). This number is in comparison to th e only seven percent increase in new diagnoses. While promising, these intensive treatments also come with considerable cost to the individual and their family. Access to treatment (Dunne, 2007), complex treatment regimens (Ikeda Chng, Oleske, 2007), and continued life threat each contribute to significant psychological difficulties
20 for youth and their families while they cope w ith HIV (Steele, Nelson, & Cole, 2007; Sherwen & Boland, 1994). The psychosocial functioning of children whos e parents have been diagnosed with HIV (Lee & Rotheram-Borus, 2002; Rotheram-Borus et al., 2003; Rotheram-Borus, Lee, Lin, & Lester, 2004) and the appropriate disclosure of HIV status to childre n (Wiener, Mellins, Marhefka, & Battles, 2007; Gers on et al., 2001) has been well st udied. Unfortunately, there is less research currently available examining the psychosocial functio ning of children and adolescents who are diagnosed w ith HIV/AIDS and no consensus regarding the impact of the diagnosis is available. For example, resear chers comparing the psychosocial functioning of school-age children on measures of depression, anxiety, and self-concep t did not find that children diagnosed with HIV re ported significantly more sympto ms than their healthy peers (Bachanas et al., 2001). Other researchers, how ever, have found that children diagnosed with HIV display significant psychosocia l difficulties. Bose and colleagues (Bose, Moss, Brouwers, Pizzo, & Lorion, 1994) found that parents of school-aged children with HIV reported that their children displayed significant anxiety, conduct probl ems, and social difficulties while Byrne and Honig (2006) found that parents re ported significantly lower sc ores on measures of general health and physical functioning while describing their childrens qual ity of life. Studies such as these, examining the psychosocial functioning of children with HIV/AIDS, are increasingly important, not only in themselves, but also beca use psychosocial difficulties in this population are often related to risky sexua l behaviors, alcohol use and s ubstance use (Murphy et al., 2001). As one might expect, the psychosocial functioning of parents and families is also impacted when a child or adoles cent is initially diagnosed with HIV/AIDS. For example, in a study by Wiener and colleagues (Wiener, Vasqu ez, & Battles, 2001), ap proximately 50% of
21 fathers of HIV infected children reported significant parenting stre ss and distress. In addition, parents of children diagnosed with HIV reported more often using passive coping styles (Martin, Wolters, Klaas, Perez, & Wood, 2004) and soci al distance (Hardy, Routh, Armstrong, Albrecht, & Davis, 1995) while parenting. The psychosocia l functioning of parents and the overall family is significant in that it is often related to out comes for their children. Compared to parents of adherent children, parents of non-adherent you th reported difficulties in communication, higher stress and lower quality of life (Mellins, Br ackis-Cott, Doleza, & Abrams, 2004). It seems obvious that the psychosocial functioning of both children and parents is related to one another and that the functioning of pare nts significantly impacts childrens later health outcomes. Unfortunately, compared to the pediatric transpla nt literature, the use of a model of traumatic stress to understand the impact of disease on psychosocial functioning has been applied even less. In fact, only one study is curren tly available that describes tr aumatic stress symptoms in youth with HIV/AIDS. In a study of 30 young adults and adolescents with HIV/AIDS, researchers found that approximately 13% of part icipants reported symptoms suggestive of a diagnosis of PTSD while an addi tional 20% of participants repor ted significant traumatic stress symptoms following their diagnosis (Radcliffe et al., 2007). Despite only a single study in the pediatric population, the use of PTSD as a mode l of psychosocial adjustment has often been successfully applied to the adult HIV/AIDS population. Across a number of studies, researchers have found that adults infected with HIV/AIDS report significant traumatic stress symptoms related to their diagnosis (Kat z & Nevid, 2005; Leserman et al., 2005; Olley, Zeier, Seedat, & Stein, 2005). Although these studies begin to sugges t that individuals infected with HIV/AIDS experience significant traumatic stress symptoms, no studies are currently available examining
22 the parents of youth infected with HIV/AIDS or comparing rates of traumatic stress symptoms to other chronic illness populations. Pediatric Sickle Cell Disease Not surprisingly, recent m edical advances have also dramatically improved the lives of children and adolescents diagnosed with sickle cell disease. Characterized by a genetic defect in hemoglobin production, sickle cell disease affects approximately 50,000 African Americans in the United States alone. Infection, anemia, stroke gallbladder disease, renal disease, and pain are among only some of the complications that ch ildren and adolescents w ith sickle cell disease may experience (Wethers, 2000). Similar to HIV/AI DS, there is no cure for sickle cell disease; however, there are many promising advances in me dications that help to alleviate the various symptoms of the disorder (Adams-Graves et al ., 1997). Unfortunately, both the complications and treatments associated with the disease do not come without a psychos ocial cost to both the child and their parent. Although there is considerable variation in rega rd to the impact of sickle cell disease on childrens psychosocial functioning, many researcher s have documented the detrimental effects associated with the disease. Compared to their siblings, younger children with sickle cell disease are more likely to exhibit extern alizing problems while older child ren are more likely to exhibit internalizing symptoms (Brown et al., 1993). Peers of school age chil dren with sickle cell disease are more likely to describe these youth as having fewer friends and being less athletic (Noll, Reiter-Purtill, Vannatta, Gerhardt, & Short, 2007). As expect ed, these psychosocial difficulties are also often associated with overa ll adaptation. For example, in a multi-site study of African American adolescents with sickle cell disease, self-esteem, assertiveness, and social support were all related to teenagers overall ad aptation (Burlew, Telfair, Colangelo, & Wright, 2000).
23 Parent and family psychosocial functioning are also related to youths ability to adaptively cope with their illne ss. Both caregiver and child social adjustment (Brown, Connelly, Rittle, & Clouse, 2006), parental stress (Loga n, Radcliffe, & Smith-Whitley, 2002), and family functioning (Mitchell et al., 2007) are related to childrens health care utilization over time. Often, parental coping is related to children s coping (Brown et al., 1993) while adapting to living with sickle cell disease. Indeed, the functioning of the fa mily is also often related to childrens psychosocial functi oning (Kell, Kliewer, Erickson, & Ohene-Frempong, 1998; Thomson et al., 2003). Given this relationship between parent and child psychosocial functioning, it is not surprising that researchers have begun to examine posttraumatic st ress in the pediatric sickle cell population. However, similar to studies of traumatic stress in pediatric transplantation and pediatric HIV, the research is this area is still relatively new. In fact, only one study is currently available that documents traumatic stress in this population. In a sample of 11 children with sickle cell disease who had experienced at leas t one hospitalization related to their disease, almost 30% of youth and 40% of parents reported symptoms consistent with a diagnosis of PTSD (Hofmann, Montalembert, Beauquier-Macco tta, de Villartay & Golse, 2007). Although only one study of this nature has currently be en published, it provides promising evidence that traumatic stress may be an appropriate model to describe the psychosoc ial functioning of both youth living with sickle cell disease and their parents. Differences in Traumatic Stress Symptoms across Illness Groups While studies across pediatric transplant (Manne et al., 2004; Young et al. 2003; She mesh et al., 2000; Walker et al., 1999), pediatric HIV (Radcliffe et al., 2007), and pediatric sickle cell disease (Hofmann et al., 2007) populati ons each document significant difficulties that youth and their families face, it is difficult to gain any clear unders tanding of how these
24 populations are doing as a whole. Research that documents that these populations each experience traumatic stress symptoms suggests that this model may describe all three disease groups; however, exactly how traumatic stress va ries across these groups remains uncertain. Indeed, some research suggests that particular pediatric chronic illn ess populations may face more traumatic stress symptoms than do other groups. For example, researchers studying a sample of youth receiving liver transplants foun d that these youth reported more traumatic stress symptoms than children undergoing routine su rgery or youth with other chronic illnesses (Walker et al., 1999). In contrast, in a st udy of parents of youth undergoing solid organ transplants, parent-report ed rates of traumatic stress were similar to those previously reported in a sample of parents of children w ith cancer (Young et al., 2003). Despite these mixed findings in regard to possible differences in traumatic stress symptoms, previous research demonstrating that life threat (Hobbie et al., 2000) is associated with greater posttraumatic stress symptoms in cancer also suggests that significant differences in symptoms across pediatric chronic illness populati ons may exist. Compared to pediatric HIV (Dixon & Cunningham, 2007; Yeni et al., 2002) and pediatric sickle cell disease (Adams-Graves et al, 1997) where life expectancy has been gr eatly extended by improved treatment regimens, children and families entering the pre-transplantation process are facing more acute life threat (Engle, 2001). This difference provides tempti ng evidence suggesting possible differences in traumatic stress symptoms across pediatric chronic illness groups such that children and families prior to transplantation will report greater trau matic stress symptoms than children diagnosed with sickle cell disease and children diagnosed with HIV. Unfortunately, many of the studies descri bed above, while documenting important psychosocial challenges that youth and parents f ace, make it difficult to draw conclusions across
25 different pediatric chronic illness populations. In addition, it is difficult to account for individual differences in adjustment within the previous bo dy of literature. Although it is certain that some children and their parents report significant trauma tic stress symptoms, other individuals seem to adjust well to their chronic condition. This difference, those coping well and those coping poorly, cannot be accounted for by the various diffe rent methodologies described above. Their methodology (i.e., examining individual chronic illness groups), while helping to control for variance, makes it difficult to generalize from one population to another or to draw conclusions about the pediatric population in general. In addition, most studies examine only a small number of psychological variables and use widely di fferent measurement techniques (e.g., interview versus questionnaire; child versus parent report) making it difficu lt to create a single coherent picture of the psychological difficulties these youth and parents face. Differences between Parent and Child Report of Traumatic Stress The use of either child self-report or pa rent-proxy-report of traum atic stress is one possible variable contributing to the significant differences in regard to reported rates of traumatic stress symptoms across pediatric chroni c illness populations. Integral to creating a coherent picture of the difficulties youth and their parents face is obtaining the most accurate information regarding youths psychosocial f unctioning. Many researchers have debated the advantages and disadvantages of youth self-report compared to parent-proxy-reports of youths psychological functioning (Eiser & Morse, 2001). For example, advocates of parent-proxyreport measures question child rens understanding of their disease, time perception, and cognitive development (Connolly & Johnson, 1999) while advocates of child self-report measures cite evidence that even young childre n can rate their own qua lity of life and can provide reliable interpretations of events, even though these interpretations may be different than those of adults (Eiser, Mohay, & Morse, 2000). Although this debate co ntinues, researchers
26 from both sides agree that gaining the most accurate information regarding youths functioning is imperative to evaluating interventions, dispen sing resources, and making medical treatment decisions (Eiser & Morse, 2001). Researchers studying other chronic illness popul ations such as obesity (Williams, Wake, Hesketh, Maher, & Waters, 2005), cancer, (Russell, Hudson, Long, & Phipps, 2006), and diabetes (Hesketh, Wake, & Cameron, 2004) ha ve documented varying results regarding differences between parent-proxy -report and youth self -report of psychological functioning. For example, Phipps and colleagues (Phipps, L ong, Hudson, & Rai, 2005) did not find significant differences in parent-proxy-report and child self-report of traumatic stress symptoms in a sample of children diagnosed with cancer. In co mparison, researchers studying children following injury found that approximately twice the numbe rs of traumatic stress symptoms were reported when using both parent-proxy and child self-repo rt measures compared to using parent-proxy report alone (Scheeringa, Wri ght, Hunt, & Zeanah, 2006). In addition, other researchers studying the pediatric injury population have reported that, wh ile children and parents report similar symptoms of traumatic stress over time, children report significantly more symptoms of traumatic stress immediately following the injury than do their parents (Schreier et al., 2005). Although few studies are available, researchers in the pediat ric transplant population have previously reported differi ng results with regard to parent vers us child report of traumatic stress For example, researchers examined differences in reports of both depressive and posttraumatic stress symptoms between 30 youth receiving solid or gan transplants (liver, heart, kidney), their parents, and clinicians compared to other chronically ill child ren (Shemesh, Annunziato, et al., 2005). They found that parents of children receiv ing transplants were le ss likely to report that their children experienced depressive or pos ttraumatic symptoms than parents of other
27 chronically ill children. In c ontrast, children receiving transp lants were as likely to report depressive and posttraumatic symptoms as othe r chronically ill children (Shemesh, Annunziato et al.). While no studies are available examin ing differences in parent-proxy and child selfreport of traumatic stress in pediatric sickle ce ll or HIV, researchers have examined differences in quality of life between parent s and children coping with sickle cell disease such that parents reported significantly worse overall quality of lif e than did their childre n (Panepinto, O'Mahar, DeBaun, Loberiza, & Scott, 2005). In contrast, other studies examining child and parent-proxy reports of child functioning have not documented significant differences. For example, researchers examining the functioning of youth stem cell re cipients found that, while si gnificant differences between parents and children on some dimensions of qual ity of life (e.g., physical functioning), parents and children tended to agree on their reports of the childs overall quality of life (Nuss and Wilson, 2007). While some studies are suggestive of significant differences between child and parent-proxy report (e.g., depres sive, posttraumatic symptomatology ) other researchers have not documented significant differences (e.g., quality of life). However, the small number of constructs measured and the populations recruited limit the conclusions drawn. In addition, the studies examined specific, but different, constructs and used different measures, making it difficult to draw any conclusions about overall differences in this population. Predictors of Traumatic Stress Perhaps one of the m ost promising explanati ons for possible differences in parent-proxy and child self-report of traumatic stress symptoms is the traumatic stress symptoms experienced by parents themselves. Indeed, it is important to examine possible predictors (e.g., parental traumatic stress) of child traumatic stress symp toms to help better understand the psychological functioning of children and the accuracy of a model of traumatic stress in describing their
28 symptoms. For example, Schreier and collea gues (Schreier et al., 2005) found that childrens traumatic stress symptoms were significantly rela ted to parents own trau matic stress symptoms in a sample of children following injury. Sh emesh and colleagues (Shemesh, Newcorn, et al., 2005) also found a similar relationship between pare nt and child symptoms of traumatic stress. Examining children being followed in specialty medical clinic, the researchers found that parents traumatic stress symptoms were significan tly related to their repo rt of their childrens symptoms. Although this research suggests a sign ificant relationship between parental and child traumatic stress symptoms, few other studies are currently available that examine this relationship and, to date, no studies are available that examine th is relationship across pediatric transplant, sickle cell di sease, or HIV groups. In addition to parental traumatic stress sympto ms, the functional status or disease severity of children has also been hypothesized as an impor tant predictor of traumatic stress symptoms in children. For example, in a study across pedi atric cancer, diabetes, and injury populations, researchers found that children s functional status significantly predicted traumatic stress symptoms by both childrens self-report and pa rents proxy-report (Landolt, Vollrath, Ribi, Gnehm, & Sennhauser, 2003). Similarly, H obbie and colleagues (H obbie et al., 2000) found higher perceived current life thr eat and more intense treatment histories in young adult survivors of cancer while Holbrook and colleagues (Holbrook et al., 2005) found perceived current life threat predicted traumatic stress symptoms in children following trauma requiring hospitalization. Although these are only two possi ble predictors of childrens traumatic stress symptoms, research in this area remains extremely limited and has rarely been applied to other pediatric chronic illness populations. If traumatic stress is an ade quate model to describe the
29 psychological functioning of children and families, then determining possible predictors of chronically ill childrens traumatic stress symp toms has important implications for later intervention in th is population. Overview of Current Literature Taken together, previous findings in the area of traum atic stress suggest that chronically ill youth and their families experience considerable psychological difficulties; however, significant differences among indivi dual studies exist. Most pr evious studies assessed only a small number of variables, examined only one chronic illness population, or did not examine both children and their families. In addition, few studies sought to understand youth, family, and parent psychosocial functioning under the umbrella of one general psychological model. While studies from individual populati ons suggest that posttraumatic stress may be an informative model from which to understand pediatric chronic illness, few studies have explored possible predictors of posttraumatic stress or directly co mpared traumatic stress symptoms across groups. In addition, the wide variabi lity in study design has made it difficult to draw definitive conclusions regarding functioning ac ross different chronic illness gr oups. Lastly, the majority of previous studies were descriptive in natu re, comparing the psychological functioning of transplant candidates and their families to ot her populations; few studies examined possible predictors of psychological distress. Such ex amination has important implications for later treatment and intervention. Given the serious consequences of youth and family psychological functioning, the current study sought to examine both youth and parent posttraumatic stress symptoms in pediatric transplant candidates, youth diagnosed with sickle ce ll disease, and youth living with HIV. Building on previous research, the current study attempted to provid e a description of the psychological functioning of both chronically ill youth and their parents using a theoretical
30 framework of posttraumatic stress and to directly compare trauma tic stress symptoms across all three chronic illness groups. Specific aims and hypotheses of the current study are described below. Current Study Aims and Hypotheses Primary Aims Aim 1: To examine traumatic stre ss sympto ms across disease groups Hypothesis 1.1. The researchers hypothesized that transplant ca ndidates would report greater traumatic stress symptoms than participants diagnosed with pediatric sickle cell disease and HIV by both child self-report and parent-proxy-report of traumatic stress symptoms. Hypothesis 1.2. The researchers hypothesized that parents of transplant candidates would report greater traumatic stress symptoms than the pa rents of participants diagnosed with pediatric sickle cell disease and HIV. Aim 2: To compare parent-proxy-report a nd youth self-report of trau matic stress symptoms Hypothesis 2.1. The researchers hypothesized that children ac ross chronic illness groups would report significantly greater traumatic stress symptoms by se lf-report than their parents by parent-proxy-report. Aim 3: To determine possible predictors of c hildrens posttraumatic stress symptoms Hypothesis 3.1. The researchers hyp othesized that parent trau matic stress symptoms and child functional status would predict child rens traumatic stress by child self-report. Hypothesis 3.2. The researchers hyp othesized that parent trau matic stress symptoms and child functional status would predict child rens traumatic stress by parent-proxy-report.
31 Secondary Aims In addition, the current studied explored in greater depth the quality of life and fa mily functioning of pediatric pretransplant candidates. Aim 4: To examine the quality of li fe of pre-transplant candidates Hypothesis 4.1. The researchers hyp othesized that children w ould report lower quality of life com pared to previously published quality of life data in the heal thy and chronic illness pediatric populations. Hypothesis 4.2. The researchers hyp othesized that parents would describe their childrens quality of life as lower than pr eviously published quality of life data in the healthy and chronic illness pediatric populations. Aim 5: To examine the family functioning of p re-transp lant candidates families Hypothesis 5.1. The researchers hypothesized that a greater percentage of families of pretransplant candidates would fa ll in the unhealthy range of fa mily functioning compared to previously published data in the healthy and chronic illness pe diatric populations.
32 CHAPTER 2 METHOD Participants The current study included a total of 67 youth (51% fe male) aged 2 to 17 years ( M = 11.18, SD = 4.78) and their parents or legal guardians aged 20 to 70 years (M =40.16, SD = 11.75). Youth included 26 pediatri c transplant candida tes comprising youth under consideration for solid organ (heart, lung, heart/lung, liver, and kidney) and bone marrow transplants, 13 youth diagnosed with and aware of their diagnosis of HIV, and 28 youth with sickle cell disease and their parents. Across disease groups, children were diagnosed with th eir current condition 0 months to 17.9 years prior to their date of participation in the current study ( M = 89.35 months, SD = 67.26). Demographic characteristics of chil d participants by disease group are summarized in Table 2-1. Parents included primarily mothers (71.2% mothers, 10.2% fathers, 8.5% grandparents, and 10.2% other legal guardians) who were married (44.1 % married, 28.8% single, 18.6% divorced, and 8.5% other) and reported a median family income of 20,000-29,999 dollars per year. Demographic characteristics of parent participants by diseas e group are summarized in Table 2-2. Inclusion criteria acr oss chronic illness groups required that the participating youth (1) had a previously scheduled outpatient appointm ent at one of three spec ialty outpatient clinics and (2) that a parent or othe r legal guardian was present at the time of the scheduled appointment. A diagnosis of mental retardati on or psychotic disorder excluded potential participants from the study. Procedures Youth were recruited from thr ee sepa rate outpatient clinics. Procedures for recruitment in each chronic illness population are summarized below. The local ins titutional review board approved all procedures.
33 Pediatric Transplant Participants were youth referred for an outpatient, pre-transp lant psychological evaluation at the Univ ersity of Florida Psychology Clinic and their parents. Families completed a battery of measures as part of their rou tine psychological evaluati on prior to their scheduled appointment. A research team member approached potential part icipants prior to this scheduled appointment to describe the study and to obtain cons ent to use completed measures th at were included as part of their routine evaluation for the current study. Pediatric Sickle Cell Disease Participants were youth with a scheduled, out patient appointm ent at the University of Florida sickle cell disease clinic and their pare nts or legal guardians who were approached by a member of the medical team to determine if they were interested in learning about a research study. If interested, a trained research team memb er approached potential participants in their exam room to describe the current study and to obtain consent. Participants completed all measures while they were waiting for their physic ian appointment and returned the measures to the research team member before leaving the clinic. Pediatric HIV Participants were youth with a scheduled, out patient appointm ent at the University of Florida HIV clinic and their pare nts or legal guardians. A memb er of the medical staff first verified the youths knowledge of their current diagnosis from the childs parent or legal guardian. After confirming that youth were informed of their diagnosis of HIV, families were approached by a member of the medical team in their exam room to determine if they were interested in learning about a re search study. If interested, pa rticipants completed measures while they were waiting for the physician and re turned the measures to the research team member before leaving the clinic.
34 Measures Participan ts completed the following measures described below. Table 2-3 describes the measures completed by parents and children by diseas e group. As described in the table, not all participants completed all measures. Participan ts completed selected measures prior to their scheduled outpatient pre-transplant psychol ogical evaluation or during their scheduled appointment in a specialty medical clinic. Parent Completed Measures Demographic questionnaire Parents or legal guardians com pleted a questionnaire covering general demographic information for the youth and family and the youth s medical history. Th is questionnaire asked for information regarding the childs medical di agnosis, previous treatm ent and hospitalizations, and current treatment regimen. These questionnaires were modified slightly in regards to disease specific information for each of the three chronic illness groups. Impact of events scale revised The participating youths parent or legal gua rdian com pleted the Impact of Events ScaleRevised (IES-R; Weiss & Marmar, 1997), a 22-item se lf-report measure that assesses current life distress. The measure includes three subscales: a voidance, intrusions, an d hyperarousal scales. The measure also includes a general composite IES-R total score where a higher score indicates more posttraumatic symptoms. Previous research ers recommend a total score of 30 or higher as suggestive of a diagnosis of PTSD. Previous stud ies also support the use of the overall score in individuals with lower symptom le vels (i.e., as a measure of posttraumatic stress symptoms even in individuals who have a score lower than 30; Creamer, Bell, & Failla, 2003). The measure has demonstrated good reliability and validity in ad ult populations (Weiss & Marmar). Researchers used this measure in studies measuring posttrau matic symptoms of parents of chronically ill
35 youth (Shemesh, Newcorn, et al., 2005) and pa rents of youth with cancer (Kazak, Alderfer, Rourke, et al., 2004). Functional disability inventory Parents acro ss all three chronic illness gr oups completed the Functional Disability Inventory (FDI; Walker & Greene, 1991). The FD I is a 15-item measure of childrens general physical functioning. Parents rated their child on various physical activities over the past two weeks on a four-point likert scale from 0 (no trou ble) to 4 (impossible). Items were summed to calculate a total score where higher scores indi cate greater functional di sability. The measure has been used to measure physical disability in children with chronic pain syndromes (Logan & Scharff, 2005) and children with emotional difficulties (Garralda & Rangel, 2004). Previous research has provided support for its reliability an d validity in measuring physical disability in pediatric populations (Walker & Greene). Family assessment device Parents of pre-transplant candida tes completed the Family Assessment Device (FAD; Epstein, Baldwin, & Bishop, 1983), a general me asure of family functioning. The 60-item measure includes six subscales: problem solving, communication, roles, affective responsiveness, affective involvement, and behavior control. An overall score, the general functioning scale, can also be cal culated. Individuals rated each item on a four-point likert scale from 1 (strongly agree) to 4 (s trongly disagree). Higher scores on this measure indicate more maladaptive family functioning. Previous researchers found support for the validity and reliability of the measures general functioning scale (Ridenour, Daley, & Reich, 1999) while other researchers have used this measure to study the family functioning of chronically ill children (Bihun, Wamboldt, Gavin, & Wam boldt, 2002; Fiese & Wamboldt, 2003).
36 Parent and Youth Completed Measures UCLA posttraumatic stress disorder reaction index Youth and parents each com pleted age-appropri ate versions of the UCLA Posttraumatic Stress Disorder Reaction Index (PTSRI; Rodrig uez, Steinberg, & Pynoos, 1998), a measure of posttraumatic stress symptoms in youth used ac ross a variety of chronic illness populations (Steinberg, Brymer, Decker, & Pynoos, 2004). The entire measure includes three components. The third component, which includes a 17-item likert scale that corresponds to DSM-IV-TR symptom criteria for PTSD, was used for all anal yses. The measure includes three versions: a child version (eight to 12 years), an adoles cent version (above 12 y ears), and a parent-proxy counterpart where higher scores indicate greater traumatic stress symptoms. The authors recommend a total score 38 or higher on the thir d component as suggest ive of PTSD. Other researchers previously used the third compone nt of this measure to assess posttraumatic symptoms in chronically ill children (Shemes h, Annunziato, et al., 2005), children undergoing liver transplants (Shemesh et al., 2000), and adolescents undergoing liver, heart or kidney transplants (Mintzer et al., 2005). Pediatric quality of life inventory Pre-transplant candid ates and their parents each completed age-appropriate versions of the Pediatric Quality of Life I nventory (PedsQL; Varni, Seid, & Kurtin, 2001), a well established generic instrument assessing physical and psychosocial dimensions of youth quality of life. The PedsQL includes four versions: a child form (age s eight to 12), an adolescent form (ages 13 to 18), a parent-proxy form for childre n (ages eight to 12), and a pare nt-proxy form for adolescents (ages 13 to 18). The 23-item measure includes f our individual subscale s (physical, emotional, social, and school) and three summary scores: a psychosocial health summary score, a physical health summary score and a total scale score. In dividuals rated on a fivepoint likert scale how
37 much of a problem certain items have been for the child or adolescent over the past month. Higher scores on this measure indi cate better quality of life. Th ese scores have demonstrated good reliability and validity in a variety of pediatric populations and researchers have found factor-analytic support for the conceptually deri ved scales (Varni, Burw inkle, Jacobs, et al., 2003; Varni, Burwinkle, Seid, & Sk arr, 2003; Varni et al., 2001).
38 Table 2-1. Demographic characte ristics of child participants Transplant HIV Sickle Cell Disease M SD % M SD % M SD % Child age 11.33 4.64 13.15 2.41 10.14 5.48 Child gender Female 40 54.5 58.3 Male 60 45.5 41.7 Child race Caucasian 47.6 15.4 0 African American 38.1 46.2 100 Hispanic 14.3 15.4 0 Other 0 23.1 0 Child minority status* Minority 47.6 15.4 0 Non-minority (Caucasian) 52.4 84.6 100 Longest hospitalization (days)* 45.59 53.85 13.14 21.08 9.00 12.61 Time since diagnosis (months) 56.21 68.31 125.33 58.96 97.59 61.12 p < .01
39 Table 2-2. Demographic characteri stics of parent participants Transplant HIV Sickle Cell Disease M SD % M SD % M SD % Parent age* 36.11 7.24 52.28 6.33 36.85 12.38 Parent race Caucasian 52.6 46.2 0 African American 31.6 30.8 100 Hispanic 10.5 15.4 0 Other 5.3 7.7 0 Parent relationship to child Mother 87.0 30.8 78.3 Father 8.7 23.1 4.3 Grandparent 0 23.1 8.7 Other legal guardian 4.3 23.1 8.6 Parent marital status Married 63.2 38.5 33.3 Single 21.1 15.4 40.7 Divorced 15.8 23.1 18.5 Other 0 23.1 7.4 Family income $9,999 11.8 23.1 27.2 $10,000 $19,999 23.5 7.7 22.7 $20,000 $39,999 29.4 31.0 36.3 $40,000 $59,999 11.8 0 9.1 $60,000 $79,999 17.7 30.8 0 $80,000 5.9 7.7 0 p < .01
40 Table 2-3. Measures completed by participants by disease group Pre-Transplant HIV Sickle Cell Disease Clinic: Psychology Clinic Pediatric HIV Clinic Pediatric SCD Clinic Parent measures: Demographic form FDI IES-R Parent-proxy PTSRI Parent-proxy PedsQL FAD Demographic form FDI IES-R Parent-proxy PTSRI Demographic form FDI IES-R Parent-proxy PTSRI Child measures (ages 8-17): Self-report PTSRI Self-report PedsQL Self-report PTSRI Self-report PTSRI
41 CHAPTER 3 RESULTS Statistical Analyses Unless otherwise stated, SPSS for W indows (SPSS Inc., 2007) was used for all analyses. Correlational and descriptive an alyses were completed amongst variables of interest and demographic variables. Ethnicity was recoded as a dichotomous variable: minority (African American, Hispanic, Native American, other) or non-minority (Caucasian). Given their negatively skewed distributions, ch ild functional status total score and parent and child traumatic stress symptom total scores were log transfor med to approximate a no rmal distribution for subsequent ANCOVA and re gression analyses. Aim 1: To Examine Traumatic Stress Symptoms across Disease Groups Analyses f or the first aim included descriptive statistics to determine the percentage of youth and parents who met clinical cut-off for traumatic stress symptoms th at are suggestive of a diagnosis of PTSD. Analysis of Covariance (ANCOVA) models were completed to assess possible differences in traumatic stress sympto ms across groups. Separate ANCOVA equations compared traumatic stress symptoms (1) acro ss youth being considered for transplant, youth diagnosed with HIV, and youth diagnosed with si ckle cell disease by child self-report, (2) across youth by parent-proxy-report and (3 ) across parents from the thr ee child illness groups based on parent self-report. Demographic variables that differed significantly between groups (i.e., parent age, length of longest hospitaliz ation, and child minority status) we re entered as covariates into each of the separate ANCOVA models. If appropr iate, post hoc analyses were also conducted to further examine significant main effects by group.
42 Aim 2: To Compare Parent-Proxy-Report and Youth Self-Report of Traumatic Stress Symptoms Paired-samples t-tests were conducted to compare child self-re port and parent-proxyreports of childrens traumatic stress symptoms. Aim 3: To Determine Possible Predictors of Childrens Posttrauma tic Stress Symptoms Similar to the method outlined by Young and colleagues (2003), hierarchical regression analysis was used to determine predictors of youth posttraumatic stress symptoms. Four separate regression equations were completed. Related demographic variables, including parent age, child minority status, and length of longest hospi talization were included in the first block of each regression equation. The predictor variable, e ither child physical status (FDI total score) or parent self-reported traumatic stress symptoms (IES-R total scor e), was entered into the second block of the regression equati on. Dependent variables includ ed youth self-reported traumatic stress symptoms (Child PTSRI total score) or parent-proxy-reported traumatic stress (Parent PTSRI total score). Exploratory analyses were also conducted to examine possible predictors of parent self-reported traumatic stress symptoms. Aims 4 and 5: To Examine the Quality of Life and Family Functioning of Pre-Transplant Candidates The researchers conducted descriptive statistics to determ ine the quality of life (Aim 4) and family functioning (Aim 5) of pediatric tran splant candidates. Independent samples t-tests were performed using NCSS and PASS statistical software (Hintze, 2004) to determine possible differences in the quality of life and family func tioning of pre-transplant candidates compared to previously published data for healthy and chronically ill children. Preliminary Analyses As shown in Tables 2-1 and 2-2, prelim in ary ANOVA analyses re vealed significant differences between disease groups across the following variables: parent age ( p < .01), child
43 minority status ( p < .01), and childs longest hospitalization in days ( p < .01). Descriptive statistics for child functional st atus (FDI total), parent self-reported traumatic stress symptoms (IES-R total), parent-proxy-reported traumatic st ress symptoms (Parent PTSRI total), and child self-reported traumatic stress symptoms (Ch ild PTSRI total) are shown in Table 3-1. Table 3-2 shows a correlation matrix examini ng the associations between child gender (male, female), child age, child race (minority, non-minority), FDI total score, IES-R total score, parent PSTRI total score, and child PSTRI total score. As shown, child age was significantly correlated with the parent PRSRI total score su ch that parents reported greater symptoms for older children ( r = .27, p < .05). IES-R total score was signifi cantly correlated with the parent PTSRI total score such that pare nts who reported they were expe riencing great traumatic stress symptoms also reported their children were experiencing greater symptoms by parent-proxyreport ( r = .27, p < .05). Lastly, child self-reported traumatic stress symptoms and parent proxyreported traumatic stress symptoms were also significantly correlated with one another ( r = .52, p < .01) such that parent-proxy-reported and child self-reported child tr aumatic stress symptoms were positively related. Reliability for each of the primary measures was calculated using the Cronbach's alpha statistic. Reliability was good acros s all the measures: child PTSRI ( = .92), parent-proxy PTSRI ( = .94), parent IES-R ( = .96), and the FDI ( = .95). Primary Aims Aim 1: To Examine Traumatic Stress Symptoms across Disease Groups Youth self-reported traumatic stress As shown in Table 3-3, 10% of youth repor ted rates of traum atic stress symptoms suggestive of a diagnosis of PTSD by self-report. Across disease groups, 15.4% of pre-transplant candidates, 8.3% of children di agnosed with HIV, and 6.7% of children diagnosed with sickle
44 cell disease reported symptoms of traumatic stress suggestive of a clinical diagnosis of PTSD by self-report. Of note, fewer chil dren (n = 45) across disease groups completed the traumatic stress measure than parents due to child age (i.e., only children aged eight and above completed selfreport measures). Symptom level means used in the ANCOVA model are shown in Table 3-1. Analysis of the ANCOVA model examining differences in child self-reported traumatic stress symptoms indicated a significant main effect of group in child-reported trauma tic stress symptoms ( F [2,22] = 4.12, p = 0.03, 2 = 0.27). The main effect of group was explored using post-hoc paired samples t-tests. Pediatric transplant candidates reported greater traumatic stress symptoms than children diagnosed with HIV ( t = 0.57, p = 0.03). All other post-hoc te sts were not statistically significant. The model indicated a non-significant main effect of parent age ( F [1, 22] = 1.31, p = 0.27, 2 = 0.06), a non-significant main effect of child minority status ( F [1, 22] = 0.07, p = 0.80, 2 = 0.003), and a significant main effect of length of longest hospitalization ( F [1, 22] = 10.09, p = 0.004, 2 = 0.31). Parent-proxy-reported traumatic stress As shown in Table 3-3, 18% of parents repo rted their ch ildren demonstrated rates of traumatic stress symptoms suggestive of a diag nosis of PTSD by parent-proxy-report. Across disease groups, 18.8% of parents of pre-transp lant candidates, 15.4% of parents of children diagnosed with HIV, and 19.0% of parents of children diagnosed with sickle cell disease reported that their children demonstrated sympto ms of traumatic stress suggestive of a clinical diagnosis of PTSD by parent-proxy-report. Symptom level means used in the ANCOVA model are shown in Table 3-1. Analysis of the ANCOVA model examining differences in parent-proxy-reported traumatic stress symptoms did not indicate a significant main effect of group in parent-proxy-re ported traumatic stress
45 symptoms ( F [2,31] = 2.07, p = 0.14, 2 = 0.12). The model indicated a non-significant main effect of parent age (F [1, 31] = 0.38, p = 0.54, 2 = 0.01), a non-significant main effect of child minority status ( F [1, 31] = 0.23, p = 0.64, 2 = 0.01), and a non-significant main effect of length of longest hospitalization ( F [1, 31] = 2.10, p = 0.16, 2 = 0.06). Parent self-reported traumatic stress As shown in Table 3-3, 12.9% of parent s across disease groups reported rates of traum atic stress symptoms suggestive of a diagnos is of PTSD. Across disease groups, 14.3% of parents of pre-transplant candida tes, 7.7% of parents of childre n diagnosed with HIV, and 14.3% of children diagnosed with sickle cell disease re ported symptoms of traumatic stress suggestive of a clinical dia gnosis of PTSD. Symptom level means used in the ANCOVA model are shown in Table 3-1. Analysis of the ANCOVA model examining differences in parent self-reported traumatic stress symptoms did not indicate a significant main effect of group in parent-self-re ported traumatic stress symptoms ( F [2,37] = 1.24, p = 0.30, 2 = 0.06). The model indicated a non-significant main effect of parent age (F [1, 37] = 2.11, p = 0.16, 2 = 0.05), a non-significant main effect of child minority status ( F [1. 37] = 0.27, p = 0.61, 2 = 0.01), and a non-significant main effect of length of longest hospitalization ( F [1, 37] = 0.56, p = 0.46, 2 = 0.02). Aim 2: To Compare Parent-Proxy-Report and Youth Self-Report of Traumatic Stress Symptoms Paired-samples t-tests examining possible differences in child-self-reported and parent proxy-reported traumatic stress symptoms are summarized in Table 3-4. Analyses revealed significant differences between child-self-repor ted and parent-proxy-reported traumatic stress symptoms ( t = 2.39, p = 0.02) across disease groups such that children reported greater symptoms than parents by child self-report. As shown in Table 3-4, bo th parents and children
46 reported varying levels of traumatic stress sy mptoms across disease groups. Given these significant findings, the researcher s also explored whether any significant differences between child-self-reported and parent-proxy-reported tr aumatic stress symptoms existed within each separate disease group. As shown, paired-samples t-tests did not reveal significant differences between child-self-reported and parent-proxy-repo rted traumatic stress symptoms in the pretransplant (t = 1.78, p = 0.11), HIV ( t = 1.12, p = 0.29), or sickle cell disease (t = 1.29, p = 0.21) group when examining each group individually. Aim 3: To Determine Possible Predictors of Childrens Posttrauma tic Stress Symptoms For the next four hierarchi cal regression analyses, rela ted demographic variables, including parent age, child mi nority status, and length of longest hospitalization were entered into the first block of each regression equation. Predictor variables, eith er child physical status (FDI score) or parent self-repor ted traumatic stress symptoms (IES-R score), were entered into the second block of each regression equation to test their effect on each dependent variable (child PTSRI total score or parent PTSRI total score). Child self-reported traumatic stress Two separate hierarchical regression equatio n s were completed to predict child selfreported traumatic stress (child PTSRI scor e). To examine the relationship between child physical status and child self-reported traumatic stress symptoms, child physical status (FDI score) was entered into the second block of the model. The overall regression model predicting youth-reported traumatic st ress was not significant ( R2 = 0.25, F [4, 25] = 1.72, p = 0.18). As shown in Table 3-5, block one of the regression an alysis showed a non-signi ficant direct effect for parent age ( =-0 .03, t = -0.13, p = 0.90), a non-significant direct effect for child minority status ( = 0.002, t = 0.01, p = 0.99), and a significant negative direct effect for longest
47 hospitalization ( = -0.51, t = -2.32, p = 0.03). Block two showed a non-significant direct effect for child physical status ( = 0.05, t = 0.26, p = 0.80). To examine the relationship between parent self-reported traumatic stress and child selfreported traumatic stress symptoms parent self-reported traumatic stress (IES-R score) was entered into the second block of the regressi on model. The overall model predicting youthreported traumatic stress was not significant (R2 = 0.45, F [4, 27] = 1.52, p = 0.23). As shown in Table 3-5, block one of the regression analysis showed a non-significant dire ct effect for parent age ( = 0.01, t = 0.02, p = 0. 98), a non-significant direct e ffect for child minority status ( = -0.01, t = -0.05, p = 0.97), and a non-significant direct e ffect for longest hospitalization ( = -0.43, t = -2.07, p = 0.05). Block two showed a non-significa nt direct effect for parent selfreported traumatic stress symptoms ( = 0.19, t = 1.00, p = 0.33). In summary, no main effect for either child physical functioning or parent-self-reported traumatic stress symptoms was found; however, le ngth of the childs long est hospitalization was significant when child functional status was entered into the m odel and approached significance when parent-self-reported traumatic stress sympto ms was entered into the model. Children with a greater number of days spen t in the hospital reported fewer traumatic stress symptoms. Parent-proxy-reported traumatic stress Two separate hierarchical regression equatio ns were com pleted to predict parent-proxyreported traumatic stress symptoms (parent PT SRI total score). To examine the relationship between child physical status and parent-proxy-reported tr aumatic stress symptoms child physical status (FDI total) was entered into the second block of the model. The overall regression model predicting pare nt-proxy-reported traumatic stress was not significant ( R2 = 0.19, F [4, 34] = 1.80, p = 0.16). As shown in Table 3-6, block one of the regression analysis showed a non-significant direct effect for parent age ( = 0.23, t = 1.42, p = 0.17), a non-
48 significant direct effect fo r child minority status ( = 0.24, t = 1.42, p = 0.17), and a nonsignificant direct effect fo r longest hospitalization ( = 0.01, t = 0.80, p = 0.94). Block two showed a significant positive effect for child physical status ( = 0.38, t = 2.18, p = 0.04). To examine the relationship between parent self-reported traumatic stress and parentproxy-reported traumatic stress symptoms parent self-reported traumatic stress (IES-R total) was entered into the second block of the regression model. The overall model predicting parentproxy-reported traumatic st ress was not significant ( R2 = 0.10, F [4, 36] = 0.93, p = 0.46). As shown in Table 3-6, block one of the regression an alysis showed a non-signi ficant direct effect for parent age ( = 0.18, t = 1.07, p = 0.29), a non-significant direct effect for child minority status ( = 0.09, t = 0.52, p = 0.61), and a non-significant direct effect for longest hospitalization ( = 0.12, t = 0.68, p = 0.50). Block two showed a non-significant direct effect for parent selfreported traumatic stress symptoms ( = 0.20, t = 1.17, p = 0.25). In summary, neither overall model including e ither child physical f unctioning or parentself-reported traumatic stress symptoms was found that signi ficantly predicted parent-proxyreported traumatic stress symptoms; however, childs functional status was significant when entered into the model. Parents of children with greater functional impairment reported that their children experienced greater traumatic stress symptoms. Parent self-reported traumatic stress An exploratory hierarchical regression analysis was com pleted to determine possible predictors of parent-self reported traumatic stress. Similar to previous analyses, demographic variables (parent age, child minority status, and length of longest hospitalization) were entered into the first block of the model and child functional status was entered into the second block of the model. A hierarchical regression equation was completed to predict parent self-reported traumatic stress symptoms. The overall regr ession model predicting parent self-reported
49 traumatic stress was not significant ( R2 = 0.18, F [4,38] = 1.87, p = 0.14). Block one of the regression analysis showed a non-signifi cant direct effect for parent age ( = 0.19, t = 1.25, p = 0.22), a non-significant direct effect for child minority status ( = -0.002, t = -0.01, p = 0.99), and a non-significant direct effect for longest hospitalization ( = -0.09, t = -.59, p = 0.56). Block two showed a significant positiv e effect for child physical status ( = .39, t = 2.43, p = 0.02). In summary, the overall model predicting parent-proxy-reported traumatic stress symptoms was not significant; however, childs functional status showed a significant positive main effect when entered into the model. Pare nts of children with greater functional impairment reported greater traumatic stre ss symptoms by self-report. Secondary Aims Aim 4: To Examine the Quality of Life of Pre-Transplant Candidates The researchers conducted descriptive statis tics to determ ine the quality of life of pediatric transplant candidates. Table 3-7 shows the means and standards deviations for the current studys pre-transplant disease group a nd previously published data for healthy and chronically ill children (Varni et al., 2001). Independent sa mples t-tests found significant differences in the quality of life of pre-transplant candidates to the hea lthy and chronically ill populations. Specifically, parents of pediatric transplant candida tes reported th at their child experienced significantly wo rse quality of life than healthy children across all domains of quality of life: physical functioning ( t = -8.75, p < .001), emotional functioning ( t = -3.67, p < .001), social functioning ( t = -8.51, p < .001), school functioning (t = -7.33, p < .001), psychosocial summary score ( t = -8.17, p < .001), and overall quality of life ( t = -9.55, p < .001). Parents also reported that pediatric transp lant candidates experienced worse quality of life than chronically ill youth across most domains of quality of life: physical functioning ( t = -3.10, p < .01), social
50 functioning ( t = -3.47, p < .001), school functioning ( t = -3.16, p < .01), psychosocial summary score ( t = -4.34, p < .001), and overall quality of life (t = -3.67, p < .001). Pediatric transplant candidates themselves also described their quality of life as worse than healthy children across all domains of qual ity of life: physical functioning ( t = -4.92, p < .001), emotional functioning ( t = -3.63, p < .001), social functioning ( t = -2.95, p < .01), school functioning ( t = -2.32, p < .001), psychosocial summary score ( t = -4.15, p < .001), and overall quality of life (t = 4.51, p < .001). Pediatric transplant candida tes also described their quality of life as worse than chronically ill children across several domains of quality of life: physical functioning ( t = -2.92, p < .001), emotional functioning ( t = -2.56, p < .05), psychosocial summary score ( t = -2.78, p < .01), and overall quality of life ( t = -2.93, p < .01). Aim 5: To Examine the Family Functioning of Pre-Transplant Candidates Families The researchers conducted descriptive statistic s to determ ine the family functioning of pediatric transplant candidates us ing previously published clinical cut-offs. Table 3-8 shows the means and standards deviations for the curr ent studys pre-transplant disease group and previously published data for non-clinical and medical popula tions (Ryan, Epstein, Keitner, Miller, & Bishop, 2005). Table 3-9 shows the cu t-off scores for unhealthy functioning and the percentage of the current sample that fell in the unhealthy range of family functioning for each subscale of the measure. Using these previously published clinical cutoffs (Ryan et al., 2005) 4.8% of families fell in the unhealthy range of functioning in the Problem Solving domain, 23.8% of families in the Communication domain, 55.0% of families in the Roles domain, 14.3% of families in the Affective Responsivene ss domain, 45.0% of families in the Affective Involvement domain, 26.3% of families in the Behavior Control domain, and 45.0% of families in the General Functioning domain fell in th e unhealthy range of family functioning.
51 Independent samples t-tests using the means a nd standard deviations as shown in Table 3-8 found some significant differences in the family functioning of pre-tr ansplant candidates to the non-clinical and medical populations. Speci fically, families of pediatric transplant candidates reported significantly better functioni ng in the Behavioral Control domain than both the non-clinical ( t = 3.54, p < 0.001) and medical ( t = 2.65, p < 0.01) populations and better functioning in the Affective Responsivene ss domain than both the non-clinical ( t = 2.20, p < 0.05) and medical ( t = 2.22, p < 0.05) populations. In addition, families of pediatric transplant candidates reported significantly better functio ning in the Communicatio n domain than the medical ( t = 3.50, p < 0.001) population.
52 Table 3-1. Descriptive statisti cs among variables of interest n M SD FDI total Transplant 17 9.24 12.93 HIV 13 2.23 2.65 SCD 28 6.61 10.60 Total 51 6.39 10.39 IES-R total Transplant 21 17.57 17.09 HIV 13 11.38 12.65 SCD 28 14.46 18.29 Total 62 14.87 16.75 Parent PTSRI total Transplant 18 10.94 9.62 HIV 13 13.54 11.69 SCD 26 10.19 10.81 Total 57 11.19 10.55 Child PTSRI total Transplant 14 18.79 13.58 HIV 12 18.08 15.22 SCD 19 15.53 12.86 Total 45 17.22 13.50 Note : Higher scores on the IES-R, parent PTSRI, and child PTSRI suggest greater traumatic stress symptoms. Higher scores on the FD I suggest greater functional disability. Table 3-2. Correlations between variable s of interest across disease groups 1. 2. 3. 4. 5. 6. 1. Child gender 2. Child age .10 3. Child minority race -.08 -.03 4. FDI total .13 .08 -.10 5. IES-R total .26 .12 .15 .05 6. Parent PTSRI total .17 .27* .25 .18 .27* 7. Child PTSRI total -.05 -.09 .02 -.04 .14 .48** p < .05, ** p < .01
53 Table 3-3. Percentage of sample meeti ng clinical cut-off for PTSD diagnoses % IES-R total Transplant 14.3 HIV 7.7 SCD 14.3 Total 12.9 Parent PTSRI total Transplant 18.8 HIV 15.4 SCD 19.0 Total 18.0 Child PTSRI total Transplant 15.4 HIV 8.3 SCD 6.7 Total 10.0 Table 3-4. Differences in child-self-reported and parent proxy-repor ted traumatic stress Child Self-Report Parent-Proxy Report M SD M SD r t Transplant 18.79 13.58 10.94 9.62 .54 1.78 HIV 18.08 15.22 13.54 11.69 .44 1.12 SCD 15.53 12.86 10.19 10.81 .51* 1.29 Total 17.22 13.50 11.19 10.55 .48* 2.39** p < .05, ** p < .01
54 Table 3-5. Hierarchical regres sion analysis predicting child self-reported traumatic stress DV: Child PTSRI B t R2 Total R2 Model 1 Block 1 Parent age -.03 -.001 -.13 .25 Child minority status .002 .002 .009 Hospitalization -.51 -.008 -2.32* Block 2 FDI .05 .04 .26 .002 .25 Model 2 Block 1 Parent age .01 <.01 .02 .17 Child minority status -.01 -.01 -.05 Hospitalization -.43 -.01 -2.07 Block 2 IES-R .19 .12 1.00 .03 .21 p < .05 Table 3-6. Hierarchical regressi on analysis predicting parent-pr oxy-reported traumatic stress DV: Parent PTSRI B t R2 Total R2 Model 1 Block 1 Parent age .23 .01 1.42 .07 Child minority status .24 .28 1.42 Hospitalization .01 <.01 .08 Block 2 FDI .38 .29 2.18* .13 .19 Model 2 Block 1 Parent age .18 .01 1.07 .06 Child minority status .09 .10 .52 Hospitalization .12 .001 .68 Block 2 IES-R .20 .13 1.17 .04 .10 p < .05
55 Table 3-7. Comparison of quality of life of pedi atric transplant candidates to the healthy and chronically ill pedi atric populations Transplant Chronically Illa Healthya M SD M SD M SD Parent PedsQL Physical score 51.46 26.06 73.28 27.02 89.32 16.35 Emotional score 65.83 17.97 73.05 23.27 82.64 17.54 Social score 60.00 15.24 79.77 21.91 91.56 14.20 School score 51.22 26.97 71.08 23.99 85.47 17.61 Psychosocial summary score 59.11 17.01 74.80 18.16 86.58 12.79 Total score 56.60 17.54 74.22 18.40 87.61 12.33 Child PedsQL Physical score 61.13 21.73 77.36 20.36 84.41 17.26 Emotional score 61.43 21.88 76.40 21.48 80.86 19.64 Social score 73.57 19.94 81.60 20.24 87.42 17.18 School score 65.54 25.84 73.43 19.57 78.63 20.53 Psychosocial summary score 65.68 21.62 77.10 15.84 82.38 15.51 Total score 64.70 18.28 77.19 15.53 83.00 14.79 Note : Higher scores on the parent and child PedsQL suggest better quality of life. a Varni et al., 2001 Table 3-8. Comparison of fam ily functioning of pediatric tr ansplant candidates to the nonclinical and medical population Transplant Non-clinicala Medicala M SD M SD M SD Problem solving 1.88 0.30 1.91 .40 1.95 .45 Communication 1.99 0.43 2.09 .40 2.13 .43 Roles 2.28 0.24 2.16 .34 2.22 .39 Affective responsiveness 1.82 0.43 2.08 .53 2.08 .53 Affective involvement 2.01 0.38 2.00 .50 2.02 .47 Behavior control 1.58 0.39 1.94 .44 1.84 .42 General functioning 1.81 0.40 1.84 .43 1.89 .45 Note : Higher scores on the FAD suggest mo re maladaptive family functioning. a Ryan et al., 2005
56 Table 3-9. Percentage of samp le meeting clinical cut-off fo r unhealthy family functioning Cut-off Score % Problem solving 2.20 3.8 Communication 2.20 23.8 Roles 2.30 55.0 Affective responsiveness 2.20 14.3 Affective involvement 2.10 45.0 Behavior control 1.90 26.3 General functioning 2.00 45.0
57 CHAPTER 4 DISCUSSION Our study adds needed research to the existi ng literature exam ining traumatic stress in pediatric chronic illness populations. Given the limited number of existing studies in this area, it was important to continue to explore the trau matic stress symptoms of both children and their parents in the pediatric chronic illness populatio n. Examining not only the prevalence of traumatic stress symptoms in three separate pediatric chronic illness groups, our study also directly compared traumatic symptoms between each of the three i llness groups, evaluated differences in children self-reported and parent-proxy-reported tr aumatic stress symptoms, and attempted to determine possible predictors of traumatic stress symptoms in the pediatric transplant, HIV, and sickle cell populations. In addition, our study explored in greater depth the quality of life and family functioning of pediatric transplant candidates. Findings Regarding Traumatic Stress Although differences were not significant be tween groups by parent-proxy and parentself-report, a significant difference in traumatic stress symptoms was observed between different chronic illness groups by child se lf-report. That pediatric tran splant candidates reported they experienced greater traumatic st ress symptoms than children dia gnosed with HIV on a self-report measure of traumatic stress symptoms provides im portant preliminary evidence that particular pediatric chronic illnes s populations may indeed experience greater traumatic stress symptoms than do other chronic illness groups. This sign ificant difference in traumatic stress symptoms was found despite the low overall rates of traumatic stress symptoms children reported. However, the low overall rates of traumatic stress (i.e., only a minority of individual reported symptoms of stress suggestive of a diagnosis of PTSD) may also account for the lack of significant differences by parent-proxy and parent-sel f-report. Overall, most individuals reported
58 sub-clinical levels of traumatic stress and obtained lower scores on each of the traumatic stress measures. This suggests that, overall, children and parents seem to be coping reasonably well with the childs chronic illness. Despite the lack of differences in traumatic stress symptoms by parent-proxy and parent self-report, the finding of a si gnificant difference in child self-reported traumatic stress symptoms suggests that pediat ric transplant candidates expe rience greater traumatic stress symptoms than children diagnosed with HIV and that the transplant process is perceived as more traumatic. While not a statisti cally significant group difference in preliminary analyses, perhaps the shorter time since diagnosis for transplant candidates ( M = 56.21, SD = 68.31) compared to children diagnosed with HIV ( M = 125.33, SD = 58.96) helps to explain this difference. A number of children currently diagnosed with HI V are diagnosed at birth (Centers for Disease Control and Prevention, 2005) and ha ve had longer to adjust to their illness, prognosis, and treatment course than children and families be ing considered for transplant who face a more uncertain treatment course and outcome (Engle, 2001). Contrary to expectations, neither the mode l including child functional status nor the model including parent self-reported traumatic stress scores significantly predicted child-self reported or parent-proxy-reported tr aumatic stress. This lack of relationship is surprising given the previous research in this area which found that child and parent tr aumatic stress symptoms were positively related to each other (Schreier et al., 2005, Shemesh, Newcorn, et al., 2005) and functional status predicted child and parent traumatic stress sy mptoms (Landolt et al., 2003). Functional status may be more important for chil dren who are currently ho spitalized as are those often studied in the pediatric inju ry literature (Schreie r et al., 2005). It may also be that the low overall rates of parent traumatic stress and chil d functional impairment ma de it more difficult to
59 find a significant relationship. Perhaps, this l ack of significant relationship suggests that other variables are accounting for the differences in traumatic stress in these populations. This may be especially true given that anal yses did reveal individual main effects when independently examining each of the variables. For example, child functional status was significantly related to parent-pr oxy-reported traumatic stress symp toms and parent self-reported traumatic stress symptoms suggesting that the phys ical or functional impact of a disease may be adversely related to traumatic stress. Parents of children may be especially susceptible to traumatic stress symptoms as they care for a chil d whose functional status is negatively affected by their condition. Regardless, future research should continue to explore other possible predictors of traumatic stress symptoms. For children coping with a chronic illness on an outpatient basis, perceived life threat or prognosis may be possible variables that are predictive of traumatic stress symptoms. Previous resear chers found that these vari ables were related to traumatic stress symptoms in the pediatri c oncology populations (Hobbie et al., 2000) and suggest possible predictors of trau matic stress to be investigated in future studies in the pediatric transplant, HIV, and si ckle cell disease areas. That length of the childs longest hospitalization also differed significantly between groups may provide additional suppo rt regarding the importance of life threat in understanding the traumatic stress symptoms chronically ill chil dren may experience. Given previous literature suggesting that life threat is associated with gr eater traumatic stress symptoms in the pediatric oncology population (Hobbie et al., 2000), the use of hospitalization length as a variable in our study may be indicative of greater life thre at for youth. Interestingly, while longer hospitalizations were related to fewer traumatic stress symptoms across groups, hospitalizations, especially hospitalizations l onger in duration, are suggestive of serious complications and
60 perhaps greater life threat. Compared to children diagnosed with HIV ( M =13.14, SD = 21.08) and children diagnosed with sickle cell disease ( M = 9.00, SD = 12.60), pediatric pre-transplant candidates ( M = 45.59, SD = 53.85) experienced longer hospita lizations on average. This difference, in combination with the acute life th reat associated with pediatric transplantation documented in previous literature (Engle, 2001), may explain our studys findings. At the time of their pre-transplant evaluation, many pediat ric transplant candidate s had already faced a lengthy chronic illness that had not responded to other treatment approaches in addition to continuing to face the uncertainty of the actual transplantation proce dure and post-transplant recovery. Despite the lack of significant group differences in traumatic stress symptoms by parentproxy-report and parent self-report, the majority of both child and parent participants reported at least some traumatic stress symptoms regardle ss of disease group and across informants. In addition, overall rates of traumatic stress symptoms were similar to those previously reported in the pediatric oncology literature using the same m easures (Kazak, Alderfer, Rourke, et al., 2004). As shown in Table 4-1, youth acros s disease groups reported simila r levels of traumatic stress symptoms by both child self-report and parent proxy-report compared to survivors of pediatric cancer. In contrast, parents of children diagnos ed with HIV and sickle cell disease reported fewer symptoms than parents of pediatric cancer survivors ( p < .05). While a minority, a number of participants also reported traumatic stress symptoms suggestive of a diagnosis of PTSD This is similar to the lim ited research in area, which has documented traumatic stress symptoms across a ll three chronic illnes s populations, including pediatric transplantation (Farley et al., 2007; Manne et al., 2004; Shemesh et al., 2000; Walker et al., 1999; Young et al., 2003), pediatric HIV (Radcli ffe et al., 2007), and pediatric sickle cell
61 disease (Hofmann et al., 2007). The lack of si gnificant differences by parent-proxy-report and parent self-report may suggest that, for parent s especially, coping with any pediatric chronic illness may be difficult and it is the illness in general, rather than specific disease-related variables, that account for the traumatic stress sy mptoms they experience. Certainly, research across disease groups supports the notion that pare nting a child with a chronic medical condition can be a traumatic experience (Balluffi et al., 2004). Interestingly, across disease groups, children and parents reported significantly different rates of child traumatic stress symptoms, althou gh rates remained positively correlated with one another. Given the mixed research previously published in this ar ea, this finding is not entirely surprising. While some researchers have not doc umented significant differences between child self-reported and parent-proxy -reported psychosocial function ing (Nuss & Wilson, 2007; Phipps et al., 2005), other researchers have documented such differences between informants (Panepinto et al., 2005; Shemesh, Annunziato, et al., 2005). In fact, differen ces in child and parent-proxyreports of functioning found in our study are sim ilar to those previous ly published in the oncology population (Kazak, Alderfer, Rourke, et al., 2004) providing additional support for differences in reported functioning by informant. It may be that the symptoms of traumatic stress are difficult for parents to observe in th eir children and account for the difference in rates of traumatic stress across informants. For exam ple, researchers in ot her populations (Connolly & Johnson, 1999; Drotar, 2004) have found that reports from parent s are often more similar to childrens self-reported functioni ng when describing physical or externalizing dimensions (e.g., oppositional behaviors) of functioning and are less similar when describing internalizing dimensions (e.g., depressive symptoms). Th is seems to be a true for our study, where examination of responses revealed that a number of families chose the I dont know option
62 when answering questions regarding their childr ens traumatic stress symptoms. That parents and children reported different rates of sympto ms suggest that parent s may not always be accurate informants regarding their childrens traumatic stress or know what traumatic stress symptoms their child may be experiencing. This may be especially important to consider when obtaining rates of symptoms by child self-report is not possible, e ither because of child age or physical status. This is especially true in our study, which included a greater number of parents who completed parent-proxy measures of child traumatic stress symptoms than children who completed self-report measures. A number of children were unde r eight years of age; without use of parent-proxy measures no assessment of child traumatic stress symptoms would have been possible. While information from parents is ce rtainly valuable and better than no information regarding child functioning at all, our study suggests that reliance on parents report of symptomatology exclusively may prevent some children from receiving needed psychosocial services. Findings Regarding Pediatric Transplantation Our study also added to the existing literature in pediatri c transplantation by exploring both the qua lity of life and family functioning of pediatric transplant candidates. Overall, the quality of life of pediatric candidates was worse than that of healthy or non-clinical populations and more similar to chronically ill or medical populations. This finding is similar to that previously reported in the pediatric liver tr ansplant population where children reported low overall quality of life (Taylor et al., 20005b), but quality of life that was similar to other pediatric chronic illness populations (Taylor et al., 2005a). These findi ngs suggest that, compared to the healthy population, the pediatric transplant process adversely affects the functioning of youth and their families. That the qual ity of life of these youth is lower than healthy children is not surprising when considering previous research that suggests significant academic, physical, and
63 psychosocial consequences related to the transplant process. That the qu ality of life of these youth was also less than that of the chronically ill population across many dimensions provides further evidence regarding the significant psycho social consequences th at these youth face. Overall, the finding of lower quali ty of life in this population is similar to findings in other pediatric illnesses where researchers have doc umented the negative im pact of a number of different pediatric diseases on childrens quality of life (Varni, Limbers, & Burwinkle, 2007). For example, lower quality of life has been report ed in the pediatric obesity (Zeller, Roehrig, Modi, Daniels, & Inge, 2005), cancer (Varni, Burwinkle, & Katz, 2004), diabetes (Varni, Burwinkle, Jacobs et al., 2003), and asthma (V arni, Burwinkle, Rapoff, Kamps, & Olson, 2004) literature compared to that repo rted in healthy populations. In addition to reports of lower quality of lif e and similar to the significant caregiver and family stress reported by parents of solid organ and bone marrow transplant candidates (Rodrique et al., 1997), a number of parents of pediat ric transplant candida tes described their family functioning as falling in the unhealt hy range across a number of dimensions of functioning. In contrast, despit e difficulties for some families, families on average reported better functioning than the non-cl inical and medical populations across several dimensions of functioning. Specific strengths in behavioral control and affec tive responsiveness compared to both the medical and non-clinical population su ggest that families of transplant candidates appropriately express their emoti ons in relation to certain situa tions and flexibly maintain and adapt their behaviors. In addition, results sugges t that transplant candidate families clearly and directly communicate with one other compared to medical families (Ryan et al., 2005). These results are surprising given previo us research in the area that s uggests that coping with a chronic illness may negatively impact a familys functioning (Pai et al., 2007). It may be that, for some
64 families, the nature of the transplant process (i.e., close contact with family members, a structured assessment protocol and opportunities for decision making) leads to greater interactions and better functioning across some do mains. For example, families coping with an event that they have previously described as tr aumatic learn more approp riate ways to express their feelings in relation to the stressful situation. Despite the relative strengths in transplant family functioning compared to previously published normative data, a number of individual families fell in the unhealthy range of family functioning using previously publis hed clinical cut-off data (Rya n et al., 2005). It seems that while the family functioning of most pediatric transp lant families is similar to or better than other populations, for some families, family functioning may be adversely impacted by the transplant process. Previous researchers have document ed a unidirectional relationship between family functioning and pediatric chronic illness such th at the specific chronic illness may result in greater family conflict following diagnosis (Pai et al., 2007). On the othe r hand, this relationship may also be bi-directional. For example, other researchers have found that impaired family functioning is related to poorer adherence in medical populations (Ryan et al., 2005), which may have resulted in the eventual need for organ tr ansplantation due to lack of compliance with a specified treatment regimen. Regardless of the di rection of the effect, impairments in family functioning reported by a number of parents of pe diatric transplant candidates may place these families at greater risk for additional psychosocial and medical difficulties as they cope with the childs illness (DeMas o et al., 1995). Although specific differences in both quality of life and family functioning were found compared to the healthy or non-clinical populati ons, fewer overall differences were found when comparing the general functioning of pediatric transplant candidates to the chronically ill
65 population. This is in contrast to the significant differences in child-self reported traumatic stress symptoms found between transpla nt candidates and children dia gnosed with HIV and suggests that the quality of life and family functioning of transplant candidates may be more similar to other chronically ill children. It may be th at, across dimensions of general functioning, chronically ill youth appear more similar to each other. However, disease specific measures of quality of life (Varni, Burwinkle, Jacobs et al., 2003) and fa mily functioning (Lewin et al., 2006), such as those created for the pediatric di abetes populations, are likely more sensitive in detecting more subtle differences across populati ons and more fully describe the unique issues that youth in a particular disease group might face. Such measures might be especially valuable in order to examine possible differences within disease groups. While not possible due to limited sample size in our study, future studies might also explore possible within group differences, such as possible differences in the quality of life and family functioning, within separate pediatric transplant groups (i .e., solid organ compared to bone marrow transplantation) using such disease specific measures. Strengths of the Study Our study included several unique elem ents that have not previously been included in the traumatic stress literature. Firs t, our study assessed traumatic stress symptoms of children by both youth self-report and parent-p roxy-report, in addition to m easuring the traumatic stress symptoms of parents themselves. Such measurement provides a more comprehensive examination of the psychosocial functioning of fam ilies as a whole. Given previous literature in pediatric cancer suggesting that at least one member of a fam ily experiences some traumatic stress symptoms during the course of a childs illness (Kazak, Alderfer, Rourke, et al., 2004), measurement of both child and parent symptoms is increasingly necessary and informative in regard to understanding a fam ilys overall psychological functioning. In addition, measurement
66 of childrens psychological symptoms by both se lf-report and parent-proxy-report provides a straightforward compromise to the continuing deba te in the field regarding the best informant (i.e., parents or children themselves) for descri bing childrens symptoms (Eiser & Morse, 2001). Second, our study attempted to determine possibl e predictors of traumatic stress in the pediatric population. While some researchers have begun to exam ine possible factors related to traumatic stress in the pediatri c populations (Hobbie et al., 2000; Holbrook et al., 2005; Landolt et al., 2003; Shemesh, Newcorn, et al., 2005), the majo rity of existing resear ch is descriptive in nature and includes few other variab les of interest. Despite the lack of statistically significant findings, the relatively large effect sizes suggest the importance of re-examining these variables in future studies recruiting larger numbers of families. Third, our study included three separate pediatric chronic illness populations: transplantation, HIV, and sickle cell disease. While several researcher s have recognized the promise of a model of traumatic stress in unders tanding pediatric chronic illness, few researchers have directly compared traumatic stress symptoms across separate disease groups (KassamAdams, 2008). Given the wide range of measurem ent tools available to describe traumatic stress symptoms, making any comparisons across different studies is exceedingly difficult. This study provides evidence across separate disease groups that pa rents and children, re gardless of disease, experience some traumatic stress symptoms. Furthermore, that children and parents reported symptoms across all three chronic illness groups suggests that coping with a pediatric illness can be a traumatic experience for families regardless of the regimens, prognoses, and treatments that are specific to their partic ular condition or diagnosis. Limitations Despite our studys strengths, it is also im porta nt to recognize certain limitations inherent in our study. First, the small sample size limited the number of variables that were tested. In
67 addition, data was missing for a number of particip ants, especially in th e pediatric transplant disease group. However, our studys sample is si milar to other studies in this area and is reflective of the national prevalence of relatively rare conditions (e.g., 2000 pediatric solid organ transplants per year nationally). This speaks to the increasing need for multi-site research and greater collaboration among pediatric researchers across institu tions. Given the relatively large effect sizes found despite the lack of statistical significance, future st udies recruiting larges samples will likely have greater power to detect statistically significant re sults. Certainly, future research would benefit from recruitment of partic ipants across several pediatric clinical practices and hospitals. Second, there was also significant variability betw een participants in our study. While significant differences in demographic va riables were controlled for in subsequent analyses, this may have made it more difficult to pe rceive differences in the variables of interest between the three chronic illn ess populations. In addition, participants motivation while completing the questionnaires may have differed across disease groups. For example, pediatric transplant candidates and their families may have felt pressured to mask any difficulties they were having for fear it would impact the pretransplant evaluation process and final medical decisions regarding transplanta tion. Third, the majority of pa rents and children reported subclinical levels of traumatic stress symptoms. This decreased the variance in traumatic stress symptoms and resulted in a negatively skewed distribution. While the impact was lessened by statistically transforming th e populations in question to more closely resemble a normal distribution, the resulting transformation also makes it more difficult to draw conclusions regarding the various relationships examined. F ourth, the generalizabilit y of our studys findings should be considered carefully. Of note, both the small samples recruited and limited assessment batteries limit the conclusions that can be drawn regarding the f unctioning of pediatric
68 populations in other areas or th e functioning of children and families over time. For example, only children with knowledge of their HIV diag nosis were included in our study. Certainly, children with no knowledge of their diagnosis may have reported different symptoms of traumatic stress than those who do. Lastly, the quality of life and family functioning measures were administered only in the pediatric pre-tr ansplant population. Cert ainly, assessing both of these domains in both the HIV and sickle ce ll disease populations w ould have been ideal; however, the inclusion of these measures was not possi ble at this time. Physicians in both clinics asked that the amount of data collection be limited out of respect for the families and clinic staff and to limit the studys possible disruption to the daily clinic routine. Implications for Clinical Intervention and Research Understanding the psych osocial functioning of chronically ill youth and their families, especially as it relates to posttraumatic stress, is integral to improving both the psychological functioning and medical outcomes for youth coping with chronic a nd life threatening medical conditions. That most parents a nd children in our study, regardless of their condition, reported at least some traumatic stress sympto ms suggests that a model of in tervention similar to the model proposed by Kazak and colleagues (National Traumatic Stress Network, 2005) may be an appropriate model to use to intervene with fam ilies by matching the intensity of services with individual family needs. Such a model answ ers the need proposed by previous researchers (Barlow & Ellard, 2004) for a single framework to guide future research and intervention work in the area. Similar to the research in traumatic stress in other pediatri c populations (Barakat et al., 2006; Best et al., 2001; Kazak, Alderfer, Rour ke, et. al., 2004; Kazak et al., 2005; Rourke et al., 1999), assessing the psychosocial functioning of both youth and their families provides researchers and clinicians an important opportunity to identify youth and families at-risk for later difficulties and to plan appropriate interventions to decrease the prevalence of these difficulties.
69 Indeed, the benefit of a model of traumatic stress in planning clinical interventions in these populations is that it provides services to fa milies experiencing both clinical and sub-clinical levels of symptomatology (Kazak, 2001; Kazak, Alde rfer, Streisand, et al ., 2004; Stuber et al., 2006) and perhaps provides clinicians an oppor tunity to intervene before more serious psychological difficulties occur. That a number of families in our study reported symptoms of traumatic stress suggestive of an actual clinical diagnosis of PTSD provides even greater support for the need for timely and effec tive interventions in these populat ions regardless of the specific pediatric condition. In addition, the finding that longer hospitaliz ations predicted fewer traumatic stress symptoms is somewhat surprising and suggest s that, perhaps for some families, longer hospitalizations provided greater time to adjust to and cope with a chronic illness as a family. In contrast, the finding that child ren experiencing greater functi onal impairment experienced greater traumatic stress symptoms by parent-proxy-report suggests that they children may be especially in need of psychol ogical services. Determining other possible predictors of posttraumatic stress symptoms in both children and their parents will help clinicians to target appropriate interventions and m odify different psychological, me dical, or environmental factors that may contribute to posttraumatic stress symptoms in this population. In addition, determining what psychological factors might di fferentiate between different chronic illness groups may also help researchers to specify the most appropriate interv ention strategy for each population. Given previous rese arch regarding the contribution of individual and family psychological variables to non-adherence, surv ival rates and prognosis (Bartlett et al., 2004; Dobkin et al., 2000; Fiese & Everhart, 2006; McC onville et al., 1990), further study in this area
70 may help to further elucidate areas of difficulty for these families and, consequently, areas for intervention. Summary Our study added to the existing literature in pediatric traum atic stress by directly comparing the traumatic stress symptoms of children and parents ac ross individual disease groups. That children being considered for transplant, children dia gnosed with HIV, and children diagnosed with sickle cell disease and their parents repor ted similar rates of traumatic stress symptoms by parent report suggests that co ping with a chronic illne ss in general can be a stressful experience. That pediatric transplant candidates in particular reported significantly more traumatic stress symptoms than youth diag nosed with HIV suggests traumatic stress may be more critical for certain disease groups. That only a minority of children and families reported symptoms suggestive of a clinical diagnosis of PTSD also suggests that families are generally coping adaptively with this stress. That children an d parents reported significantly different rates of child traumatic stress symp toms provides further support regarding the necessity of child self-report measures in accurately assessing childrens psychosocial functioning. Our study also found th at inpatient hospitalizations we re related to childrens report of traumatic stress symptoms and child functional impairment was related to parents report of both their childrens symptoms and their own tr aumatic stress symptoms. Finally, the study explored in greater depth the quality of life and family func tioning of pediatric transplant candidates finding that, while sign ificant differences in functioni ng were reported compared to the healthy populations in most areas, general quality of life and family functioning was more similar to other chronic illness populations. Overal l, these findings are signi ficant in that they suggest that a model of interven tion, such as that found with the traumatic stress literature, may
71 be especially informative and effective in that it addresses the needs of families across pediatric conditions and those who report both clinical and sub clinical le vels of distress.
72 Table 4-1. Comparison of traumatic stress sy mptoms to the pediatric oncology population n M SD IES-R total Transplant 21 17.57 17.09 HIV 13 11.38 12.65 SCD 28 14.46 18.29 Cancera 146 28.20 24.49 Parent PTSRI total Transplant 18 10.94 9.62 HIV 13 13.54 11.69 SCD 26 10.19 10.81 Cancera 146 23.89 12.83 Child PTSRI total Transplant 14 18.79 13.58 HIV 12 18.08 15.22 SCD 19 15.53 12.86 Cancera 150 15.67 12.51 a Kazak, Alderfer, Rourke, et al., 2004
73 LIST OF REFERENCES Ada ms-Graves, P., Kedar, A., Koshy, M., Steinb erg, M., Veith, R., Ward, D., et al. (1997). RheothRx (poloxamer 188) injection for the acute painful episode of sickle cell disease: a pilot study. Blood, 90 2041-2046. American Psychiatric Association (2000). Diagnostic and Statistical Manual of Mental Disorders DSM-IV-TR (Text Revision). Arlington: American Ps ychiatric Association. Bachanas, P.J., Kullgren, K.A., Schwartz, K.S., Lanier, B., McDaniel, J.S., Smith, J., et al. (2001). Predictors of psychological adjustment in school-age children infected with HIV. Journal of Pediatric Psychology, 26 343-352. Balduzzi, A., Gooley, T., Anasetti, C., Sanders J.E ., Martin, P.J., Petersdorf E.W., et al. (1995). Unrelated donor marrow transplantation in children. Blood, 15, 3247-3256. Balluffi, A.L., Kassam-Adams, N.P., Kazak, A.P., Tucker, M., Dominguez, T., & Helfaer, M. (2004). Traumatic stress in parents of child ren admitted to the pediatric intensive care unit. Pediatric Critical Care Medicine, 5 547-553. Barakat, L.P., Alderfer, M.A., & Kazak, A.E. (2006). Posttraumatic growth in adolescent survivors of cancer and their mothers and fathers. Journal of Pediat ric Psychology, 31 413-419. Barlow, J. H. & Ellard, D.R. (2004). Psycho-edu cational interventions for children with chronic disease, parents and siblings: an overview of the research evidence base. Child: Care, Health, and Development, 30, 637-645. Barlow, J.H. & Ellard, D.R. (2006). The psyc hosocial well-being of children with chronic disease, their parents and siblings: an overview of the research evidence base. Child: Care, Health, and Development, 32, 9-31. Bartlett, S.J., Krishnan, J.A., Riekert, K.A., Butz, A.M., Malveaux, F.J., & Rand, C.S. (2004). Maternal depressive symptoms and adherenc e to terapy in inner-c ity children with asthma. Pediatrics, 113 229-237. Best, M., Streisand, R., Catania, L., & Kazak, A.E. (2001). Pare ntal distress during pediatric leukemia and posttraumatic stress symptoms (PTSS) after treatment ends. Journal of Pediatric Psychology, 26 299-307. Bethell, C.D., Read, D., Blumberg, S.J., & New acheck, P.W. (2008). What is the prevalence of children with special health care needs? Toward an understanding of variations in findings and methods across three national surveys. Maternal and Child Health Journal, 1, 1-14.
74 Bihun, J.T., Wamboldt, M.Z., Gavin, L.A., & Wamboldt, F.S. (2002). Can the Family Assessment Device (FAD) be used with school aged children? Family Process, 41 723731. Boekaerts, M. & Rder I. (1999). Stress, coping, and adjustment in children with a chronic disease: a review of the literature. Disability and Rehabilitation, 21 311-337. Bose, S., Moss, H., Brouwers, P., Pizzo, P., & Lorion, R. (1994). Psychologic adjustment of human immunodeficiency virus-in fected school-age children. Journal of Developmental & Behavioral Pediatrics, 15 S34. Brosig, C.L. (2003). Psychological func tioning of pediatric lung transplant candidates/recipients: A review of the literature. Pediatric Transplantation, 7 390-394. Brown, R.T., Connelly, M., Rittle, C., Clouse, B. (2006). A longitudinal examination predicting emergency room use in children with si ckle cell disease and their caregivers. Journal of Pediatric Psychology, 31 163-173. Brown, R.T., Kaslow, N.J., Doepke, K., Buchan an, I., Eckman, J., Baldwin. K., & Goonan, B. (1993). Psychosocial and family functioning in children with sickle cell syndrome and their mothers. Journal of the American Academy of Child and Adolescen t Psychiatry, 32 545-553. Burlew, K., Telfair, J., Colangelo, L., & Wright, E.C. (2000). Factors th at influence adolescent adaptation to sickle cell disease. Journal of Pediatric Psychology, 25 287-299. Byrne, M.W. & Honig, J. (2006). Health-relate d quality of life of HI V-infected children on complex antiretroviral therapy at home. Journal of the Association of Nurses in AIDS Care 17, 27-35. Cadman, D., Rosenbaum, P., Boyle. M., & Offord, D.R. (1991). Children with chronic illness: family and parent demographic characteristics and psychosocial adjustment. Pediatrics, 87, 884-889. Centers for Disease Contro l and Prevention (2005). HIV/AIDS Surveillance Report Retrieved January 3, 2008, from http://www.cdc.gov/hiv /topics/surveillance/re sources/reports/ 2005report/ default.htm Cohen, D.M., Lumley, M.A., Naar-King, S., Partri dge, T., & Cakan, N. (2004). Child behavior problems and family functioning as predictors of adherence and gl ycemic control in economically disadvantaged children with type 1 diabetes: A prospective study. Journal of Pediatric Psychology, 29 171-184. Connolly, M.A. & Johnson, J.A. (1999). Measuring quality of life in p aediatric patients. Pharmacoeconomics, 16, 605-625.
75 Creamer, M., Bell, R., & Failla, S. (2003). Psychome tric properties of the Impact of Event Scale Revised. Behavior Research and Therapy, 41 1489-1496. Cuffe, S.P., Addy, C.L., Garrison, C.Z., Waller, J.L., Jackson, K ., McKeown, R.E., et al. (1998). Prevalence of PTSD in a community sample of older adolescents. Journal of the American Academy of Child & Adolescent Psychiatry, 37 147-154. DeMaso, D.R., Kelley, S.D., Bastardi, H., OBrie n, P., & Blume, E.D. (2004). The longitudinal impact of psychological functioning, medical se verity, and family functioning in pediatric heart transplant. Journal of Heart and Lung Transplantation, 23, 473-480. DeMaso, D.R., Twente, A.W., Spratt, E.G., & O Brien, P. (1995). Impact of psychological functioning, medical severity, and family func tioning in pediatric heart transplantation. Journal of Heart and Lung Transplantation, 14, 1102-1108. Dixon T.C. & Cunningham, C.K. (2007). Trea tment of children with HIV infection. Current HIV/AIDS Reports, 4 93-99. Dobkin, P.L., Poirier, R.M., Robaey, P., B onny, Y., Champagne, M., & Joseph, L. (2000). Predictors of physical outcomes in pe diatric bone marrow transplantation. Bone Marrow Transplant, 26 553-558. Drotar, D (2004). Validating measures of pediatric healthy status, functi onal status, and healthrelated quality of life: Key methodol ogical challenges and strategies. Ambulatory Pediatrics, 4 358-364. Dunne M. (2000). Antiretroviral drug development: the challenge of cost and access. AIDS, 21, S73-79. Eiser, C., Mohay, H., & Morse, R. (2000). The measurement of quality of life in young children. Child: Care, Health, and Development, 26 401-414. Eiser, C. & Morse, R. (2001). Can parents rate th eir child's health-related quality of life? Results of a systematic review. Quality of Life Research, 10 347-357. Engle, D. (2001). Psychosocial aspect of th e organ transplant experience: What has been established and what we need for the future Journal of Clinical Psychology, 57 521549. Epstein, N.B., Baldwin, LM., & Bishop, D.S. (1983). The McMaster Family Assessment Device. Journal of Marital and Family Therapy, 9 171 Farley, L.M., DeMaso, D.R., D'Angelo, E., Kinnamon, C., Bastardi, H., Hill, C.E., Blume, E.D., & Logan, D.E. (2007). Parenting stress and pa rental post-traumatic stress disorder in families after pediatric heart transplantation. Journal of Heart and Lung Transplantation, 26, 120-126.
76 Fiese, B.H. & Everhart, R.S. (2006). Medica l adherence and childhood chronic illness: family daily management skills and emotional climate as emerging contributors. Current Opinion in Pediatrics, 18 551-557. Fiese, B.H. & Wamboldt, F.S. (2003). Cohere nt accounts of coping with a chronic illness: convergences and divergences in family measurement using a narrative analysis. Family Process, 42, 439-451. Fotheringham M.J. & Sawyer, M.G. (1995). A dherence to recommended medical regimens in childhood and adolescence. Journal of Paediatrics and Child Health, 31 72-78. Garralda, M.E. & Rangel, L. (2004). Impairment and coping in children and adolescents with chronic fatigue syndrome: a comparative study with other pediatric disorders. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 45 543-552. Geist, R., Grdisa, V., & Otley, A. (2003). Psyc hosocial issues in the child with chronic conditions. Best Practice & Research Clinical Gastroenterology, 17 141-152. Gerson, A.C., Joyner, M., Fosarelli, P., Butz, A., Wissow, L., Lee, S., et al. (2001). Disclosure of HIV diagnosis to children: When, where, why, and how. Journal of Pediatric Health Care, 15, 161-167. Hardy, M.S., Routh, D.K., Armstrong, F.D., Albrech t, J., & Davis, J. (1995). Interpersonal distance and coping in children with HIV and cancer. Child Health Care, 24 119-131. Health Resources and Services Administration (2006). 2006 Annual Report of the U.S. Organ Procurement and Transplantation Network and th e Scientific Regist ry of Transplant Recipients: Transplant Data 1996-2005 Health Resources and Services Administration, Healthcare Systems Bureau, Division of Transplantation, Rockville, MD. Hesketh, K.D., Wake, M.A., & Cameron, F.J. (2004). Health-related quality of life and metabolic control in children with type 1 diabetes: a prospective cohort study. Diabetes Care, 27, 415-420. Hintze, J. (2004). NCSS and PASS Number Cruncher Statistica l System. Kaysville, Utah. Hobbie, W.L., Stuber, M., Meeske K., Wissler, K., Rourke, M.T ., Ruccione, K., et al. (2000). Symptoms of posttraumatic stress in young adult survivors of childhood cancer. Journal of Clinical Oncology, 18 4060-4066. Hofmann, M., Montalembert, M., Beauquier-Maccotta, B., de Villartay, P. & Golse, B. (2007). Posttraumatic stress disorder in children affect ed by sickle-cell disease and their parents. American Journal of Hematology 82 171.
77 Holbrook, T.L., Hoyt, D.B., Coimbra, R., Potenza, B., Sise, M.J., Sack, D.I., & Anderson, J.P. (2007). Trauma in adolescents causes long-te rm marked deficits in quality of life: adolescent children do not recover preinjury quality of life or function up to two years postinjury compared to national norms. Journal of Trauma, 62, 577-583 Hsu, D.T. (2005). Biological and psychological differences in the child and adolescent transplant recipient. Pediatric Transplantation, 9 416-421. Ikeda, T., Ch'ng, T.W., & Oleske, J.M. (2007). Recommendations in pe diatric antiretroviral therapy. Expert Opinion on Pharmacotherapy, 8, 155-166. Jay, S., Litt, I.F., & Durant, R.H. (1984). Compliance with therapeutic regimens. Journal of Adolescent Health Care, 5 124-136. Kassam-Adams, N. (2008, April). Evaluating and Treating Trauma in Pediatric Settings. Symposium presented at the National Conference on Child Health Psychology, Miami, FL. Katz, S. & Nevid, J.S. (2005). Risk factors associated with posttrau matic stress disorder symptomatology in HIV-infected women. AIDS Patient Care STDs, 19 110-120. Kazak, A.E. (2001). Comprehensive care for childr en with cancer and their families: A social ecological framework guiding rese arch, practice, and policy. Childrens Services: Social Policy, Research and Practice, 4, 217-233. Kazak, A.E., Alderfer, M., Rourke, M.T., Simms, S., Streisand, R., & Grossman, J.R. (2004). Posttraumatic stress disorder (PTSD) and pos ttraumatic stress symptoms (PTSS) in families of adolescent childhood cancer survivors. Journal of Pediatric Psychology, 29 211-219. Kazak, A.E., Alderfer, M., Streisand, R., Simms, S., Rourke, M.T., Hwang W-T, et al. (2004). Treatment of posttraumatic stress symptoms in adolescent survi vors of childhood cancer and their families Journal of Family Psychology, 18, 493-504. Kazak, A.E., Boeving, C.A., Alderfer, M.A., Hwa ng, W.T., & Reilly, A. (2005). Posttraumatic stress symptoms during treatment in parents of children with cancer. Journal of Clinical Oncology, 23, 7405-7410. Kazak, A. E. & Drotar, D. (1997) Relating parent and family functioning to the psychological adjustment of children with chronic health conditions: What have we learned? What do we need to know? Journal of Pediatric Psychology, 22 149-165. Kell, R.S., Kliewer, W., Erickson, M.T., Ohene-Frempong, K. (1998). Psychological adjustment of adolescents with sickle cell disease: rela tions with demographic, medical, and family competence variables. Journal of Pediatric Psychology, 23, 301-312.
78 Landolt, M.A., Vollrath, M., Ribi, K., Gnehm, H.E., & Sennhauser, F.H. (2003). Incidence and associations of parental and child posttraumatic stress symptoms in pediatric patients. Journal of the American Academy of Child and Adolescent Psychiatry, 44, 1199-1207. Lavigne, J.V. & Faier-Routman J. (1992). Psyc hological adjustment to pediatric physical disorders: a meta-analytic review. Journal of Pediatric Psychology, 17 133-157. Lavigne, J. V. & Faier-Routman, J. (1993). Correl ates of psychological ad justment to pediatric physical disorders: a meta-analytic review and comparison with existing models. Journal of Developmental and Behavioral Pediatrics, 14, 117-123. Lee, M. B, & Rotheram-Borus, M. J. (2002). Pa rents' disclosure of HIV to their children. AIDS, 16, 2201-2207. Lemanek, K.L., Kamps, J., & Chung, N.B. (2001). Empirically supported treatments in pediatric psychology: Regimen adherence. Journal of Pediatric Psychology, 26 253-275. Leserman, J., Whetten, K., Lowe, K., Stangl, D., Swartz, M., & Thielman, N.M (2005). How Trauma, Recent Stressful Events, and PTSD Af fect Functional Health Status and Health Utilization in HIV-Infected Patients in the South. Psychosomatic Medicine, 67 500-507. Lewin, A.B., Heidgerken, A.D., Geffken, G.R., Williams, L.B., St orch, E.A., Gelfand, K.M., et al. (2006). The relation between family fact ors and metabolic control: The role of diabetes adherence. Journal of Pediatric Psychology, 31 174-183. Lewis, M. & Vitulano. L.A. (2003). Biopsychosocia l issues and risk factors in the family when the child has a chronic illness. Child and Adolescent Psychiatric Clinics of North America, 12, 389-399. Logan, D.E., Radcliffe, J., & Smith-Whitley, K. (2002). Parent factors and adolescent sickle cell disease: associations with patterns of health service use. Journal of Pediatric Psychology, 27, 475-484. Logan, D.E. & Scharff, L. (2005). Relationships between family and parent characteristics and functional abilities in children with recurrent pain syndromes: An investigation of moderating effects on the pathwa y from pain to disability. Journal of Pediatric Psychology, 30, 698-707. Manne, S., DuHamel, K., Ostroff, J., Parsons, S. Martini, D.R., Williams, S.E., et al. (2004). Anxiety, depressive, and posttraumatic stre ss disorders among mothers of pediatric survivors of hematopoietic stem cell transplantation. Pediatrics, 113 1700-1708. Martin, S.C., Wolters, P.L., Klaas, P.A., Perez, L., & Wood, L.V. (2004). Coping styles among families of children with HIV infection. AIDS Care, 16, 283-292.
79 McClellan, C.B. & Cohen, L.L. (2007). Family functioning in children with chronic illness compared with healthy controls: A critical review. Journal of Pediatrics, 150, 221-223, McConville, B.J., Steichen-Asch, P., Harris, R., Neudorf, S., Samb rano, J., Lampkin, B., et al. (1990). Pediatric bone marrow transp lants: psychological aspects. Canadian Journal of Psychiatry, 35, 769-775. Mellins, C.A., Brackis-Cott, E., Dolezal, C., & Abrams, E.J. (2004). The role of psychosocial and family factors in adherence to antire troviral treatment in human immunodeficiency virus-infected children. Pediatric Infectious Disease Journal, 23 1035-1041. Mintzer, L.L., Castaneda, M., Mesrkhani, V., St uber, M.L., Seacord, D., & Glover, D. (2005). Traumatic stress symptoms in adolescent organ transplant recipients. Pediatrics, 115, 1640-1644. Mitchell, M.J., Lemanek, K., Palermo, T.M., Cr osby, L.E., Nichols, A, & Powers, S.W. (2007). Parent perspectives on pain management, c oping, and family functioning in pediatric sickle cell disease. Clinical Pediatrics, 46, 311-319. Murphy, D.A., Durako, S.J., Moscicki, A.B., Ve rmund, S.H., Ma, Y., Schwarz, D.F., et al. (2001). No change in health risk behavior s over time among HIV infected adolescents in care: role of psychological distress. Journal of Adolescent Health, 29, S57-63. National Traumatic Stress Network (2005). Understanding Child Traumatic Stress Retrieved August 25, 2006, from http://www.nctsn.or g/nctsn_assets/pdf s/edu_materials/ Understanding_ Child_Traumatic _Stress_Brochure_9-29-05.pdf. Newacheck, P.W. & Halfon, N. (1998). Prevalen ce and impact of disabling chronic conditions in childhood. American Journal of Public Health, 88, 610-617. Newacheck, P.W., McManus, M.A., & Fox, H.B. (1991). Prevalence and impact of chronic illness among adolescents. American Journal of Di seases of Children, 145 1367-1373. Noll, R.B., Reiter-Purtill, J., Vannatta, K., Gerhardt, C.A., & Short, A. (2007). Peer relationships and emotional well-being of child ren with sickle cell disease: a controlled replication. Child Neuropsychology, 13 173-187. Nuss, S.L. & Wilson, M.E. (2007). Health-related quality of life following hematopoietic stem cell transplant during childhood. Journal of Pediatric Oncology Nursing, 24 106-115. Olley, B.O., Zeier, M.D., Seedat, S., & Stein, D.J. (2005). Post-traumatic stress disorder among recently diagnosed patients with HIV/AIDS in South Africa. AIDS Care, 17, 550-557. Osterberg L. & Blaschke T. ( 2005). Adherence to medication. New England Journal of Medicine, 353 487-497.
80 Pai, A.L., Greenley, R.N., Lewandowski, A., Drotar, D., Youngstrom, E., Peterson, C.C. (2007). A meta-analytic review of the influence of pediatric cancer on parent and family functioning. Journal of Family Psychology, 21, 407-415. Panepinto, J.A., O'Mahar, K.M., DeBaun, M.R., L oberiza, F.R., & Scott, J.P. (2005). Healthrelated quality of life in children with sickle cell diseas e: child and parent perception. British Journal of Haematology, 130 437-444. Phipps, S., Dunavant, M., Lensing, S., & Rai, S.N. (2005). Psychosocial pred ictors of distress in parents of children undergoing stem ce ll or bone marrow transplantation. Journal of Pediatric Psychology, 30, 139-153. Phipps, S., Long, A., Hudson, M., & Rai, S.N. ( 2005). Symptoms of post-traumatic stress in children with cancer and their parents: eff ects of informant and time from diagnosis. Pediatric Blood Cancer, 45 ,952-9. Plante, W.A., Lobato, D., & Engel, R. (2001). Review of group interventions for pediatric chronic conditions Journal of Pedi atric Psychology, 26 435-453. Radcliffe, J., Fleisher, C.L., Hawkins, L.A., Tann ey, M., Kassam-Adams, N., Ambrose, C., et al. (2007). Posttraumatic stress and trauma history in adolescents and young adults with HIV. AIDS Patient Care STDS, 21 501-508. Ridenour, T.A., Daley, J.G., & Reich, W. (1999). Factor analyses of the family assessment device. Family Process, 38 497-510. Rodrigue, J.R., MacNaughton, K., Hoffman, R.G., Graham-Pole, J., Andres, J.M., Novak, D.A., et al. (1996). Perceptions of pa renting stress and family relations by fathers of children evaluated for organ transplantation. Psychological Reports, 79 723-727. Rodrigue, J.R., MacNaughton, K., Hoffman, R.G., Graham-Pole, J., Andres, J.M., Novak, D.A., et al. (1997). Transplantation in children: A longitudinal as sessment of mothers stress, coping, and perceptions of family functioning. Psychosomatics, 38, 478-486. Rodriguez, N., Steinberg, A., & Pynoos, R.S. (1998). UCLA Post Traumatic Stress Disorder Reaction Index for DSM-IV, Child, Adolescent, and Parent Versions. Los Angeles: University of California at Los Angeles. Rotheram-Borus, M.J., Lee, M., Leonard, N., Lin, Y.Y., Franzke, L., Turner, E., et al. (2003). Four-year behavioral outcomes of an interv ention for parents living with HIV and their adolescent children. AIDS, 17, 1217-1225. Rotheram-Borus, M.J., Lee, M., Lin, Y.Y., & Lest er, P. (2004). Six-year intervention outcomes for adolescent children of parents wi th the human immunodeficiency virus. Archives of Pediatric and Adolescent Medicine, 158 742-748.
81 Rourke, M.T., Stuber, M.L., Hobbie, W.L., & Kazak A.E. (1999). Posttraumatic stress disorder: understanding the psychosocial impact of surviving chil dhood cancer into young adulthood. Journal of Pediatric Oncology Nursing, 16 126-135. Russell, K.M., Hudson, M., Long, A., & Phipps, S. (2006). Assessment of h ealth-related quality of life in children with cancer: consiste ncy and agreement between parent and child reports. Cancer, 106, 2267-2274. Ryan, C.E., Epstein, N.B., Keitner, G.I ., Miller, I.W., & Bishop, D.S. (2005). Evaluating and Treating Families: The McMaster Approach. New York: Routledge. Scheeringa, M.S., Wright, M.J., Hunt, J.P., & Zeanah, C.H. (2006). Factors affecting the diagnosis and prediction of PTSD symptomatology in children and adolescents. American Journal of Psychiatry, 163 644-651. Schreier, H., Ladakakos, C., Morabito, D., Chapman, L., & Knudson, M.M. (2005). Posttraumatic stress symptoms in children after mild to moderate pediatric trauma: a longitudinal examination of symptom prevalen ce, correlates, and pa rent-child symptom reporting. Journal of Trauma, 58, 353-563. Shemesh, E., Annunziato, R.A., Shneider, B.L., Newcorn, J.H., Warshaw, J.K., Dugan, C.A., et al. (2005). Parents and clinic ians underestimate distress a nd depression in children who had a transplant. Pediatric Transplantation, 9 673-679. Shemesh, E., Lurie, S., Stuber, M.L., Emre, S., Patel, Y., Vohra, P., et al. (2000). A pilot study of posttraumatic stress and nonadherence in pe diatric liver transplant recipients. Pediatrics, 105 E29. Shemesh, E., Newcorn, J.H., Rockmore, L., Shneider, B.L., Emre, S., Gelb, B.D., et al. (2005). Comparison of parent and child reports of emotional trauma symptoms in pediatric outpatient settings. Pediatrics, 115 e582-589. Sherwen, L.N. & Boland, M. (1994). Overview of psychosocial research concerning pediatric human immunodeficiency virus infection. Journal of Developmental and Behavioral Pediatrics, 15, S5-S11. Smith, B.A. & Shuchman, M. (2005). Problem of nonadherence in chroni cally ill adolescents: Strategies for assessment and intervention. Current Opinion in Pediatrics, 17, 613-618. SPSS Inc. (2007). SPSS 15.0 for Windows, Rel. 22.214.171.124. Chicago: SPSS Inc. Steele, R., Nelson, T.D., & Cole, B.P. (2007). Psychosocial functioning of children with AIDS and HIV infection: Review of the literat ure from a socioecological framework. Journal of Developmental & Behavioral Pediatrics, 28 58-69.
82 Stein, R.E. & Jessop, D.J. (1984). Relationship between health status and psychological adjustment among children with chronic conditions Pediatrics, 73 169. Stein, R.E., Westbrook, L.E., & Silver, E.J. (1998) Comparison of adjustment of school-age children with and without chronic conditions: results from community-based samples. Journal of Developmental and Behavioral Pediatrics, 19 267-272. Steinberg, A.M., Brymer, M.J., Decker, K.B., Pynoos, R.S. (2004). The University of California at Los Angeles Posttraumatic St ress Disorder Reaction Index. Current Psychiatry Reports, 6 96-100. Streisand, R.M. & Tercyak, K.P. (1995). Eval uating the pediatric transplant: General considerations. In M.C. Roberts (Ed.), Handbook of Pediatric Psychology, Second Edition. (pp. 71-92). New York : The Guilford Press. Storch, E.A., Heidgerken, A.D., Geffken, G.R., Lewin, A.B., Ohleyer, V., Freddo, M., et al. (2006). Bullying, regimen self-management, and metabolic control in youth with type I diabetes. The Journal of Pediatrics, 148 784-787. Stuber, M.L., Schneider, S., Kassam-Adams, N., Kazak, A.E., & Saxe, G. (2006). The medical traumatic stress toolkit. CNS Spectrum, 11, 137-142 Stuber, M.L., Shemesh, E., & Saxe, G.N. (2003). Posttraumatic stress responses in children with life-threatening illnesses. Child and Adolescent Psychiatric Clinics of North America, 12, 195-209. Taylor, R., Franck, L.S., Gibson, F., & Dhawan, A. (2005a). A critical review of the healthrelated quality of life of children and a dolescents after live r transplantation. Liver Transplantation and Surgery, 11, 51-60. Taylor, R., Franck, L.S., Gibson, F., & Dhawan, A. (2005b). Liver transpla ntation in children: Part 2 long-term issues. Journal of Child Health Care, 9 274-287. Thompson, R.J., Armstrong, F.D., Link, C.L., Pegelo w, C.H., Moser, F., & Wang, W.C. (2003). A prospective study of the relationship over time of behavior problems, intellectual functioning, and family functioning in children w ith sickle cell disease: A report from the cooperative study of sickle cell disease Journal of Pediatric Psychology, 28 59-65. Todaro, J.R., Fennel, E.B., Sears, S.F., Rodr ique, J.R., & Roche, A.K. (2000). Review: Cognitive and psychological outcomes in pediatric heart transplantation. Journal of Pediatric Psychology, 25 567-576. Tredger, J.M., Brown, N.W., & Dhawan, A. (2006) Immunosuppression in pediatric solid organ transplantation: oppor tunities, risks, and management. Pediatric Transplantation, 10 879-892.
83 van Dyck, P.C., Kogan, M.D., McPherson, M.G., Weissman, G.R., & Newacheck, P.W. (2004). Prevalence and characteristics of childr en with special health care needs. Archives of Pediatric and Adolescent Medicine, 158 884-890. Varni, J., Burwinkle, T., Jacobs, J., Gottsch alk, M., Kaufman, F., & Jones, K. (2003). The PedsQL in type 1 and type 2 diabetes: Reliab ility and validity of th e pediatric quality of life inventory generic core scales and type 1 diabetes module. Diabetes Care, 26, 631637. Varni, J.W., Burwinkle, T.M., & Katz, E.R. ( 2004). The PedsQL in pediatric cancer pain: a prospective longitudinal analysis of pain and emotional distress. Journal of Developmental and Behavioral Pediatrics, 25 239-246. Varni, J.W., Burwinkle, T.M., Rapoff, M.A., Ka mps, J.L., & Olson, N. (2004). The PedsQL in pediatric asthma: reliability a nd validity of the pedi atric quality of life inventory generic core scales and asthma module. Journal of Behavioral Medicine, 27 297-318. Varni, J., Burwinkle, T., Seid, M., & Skarr, D. (2003). The PedsQL 4.0 as a pediatric population health measure: feasibilit y, reliability, and validity. Ambulatory Pediatrics, 3 329-341. Varni, J.W., Limbers, C.A., & Burwinkle, T.M. (2007). Impaired health-rel ated quality of life in children and adolescents with chronic conditi ons: a comparative analysis of 10 disease clusters and 33 disease categorie s/severities utilizing the Peds QL 4.0 Generic core scales. Health and Quality of Life Outcomes, 16 5:43. Varni, J.W., Seid, M., & Kurtin, P.S. (2001). PedsQL 4.0: reliability and validity of the pediatric quality of life inventory version 4.0 generi c core scales in healthy and patient populations. Medical Care, 39 800-812. Walker, A.M., Harris, G., Baker, A., Kelly, D., & Houghton, J. (1999). Posttraumatic stress responses following liver transp lantation in older children. Journal of Child Psychology and Psychiatry, 40, 363-374. Walker, L.S. & Greene, J.W. (1991). The functiona l disability inventory: measuring a neglected dimension of child health status. Journal of Pediatric Psychology, 16 39-58. Weiss, D. & Marmar, C. (1997). The Impact of Event Scale -Revised. In J. Wilson & T. Keane (Eds), Assessing psychological trauma and PTSD New York: Guildford. Wethers, D.L. (2000). Sickle cell disease in ch ildhood: Part II. Diagnosis and treatment of major complications and recent advances in treatment. American Family Physician, 62, 13091314.
84 Wiebe, D.J., Berg, C.A., Korbel, C., Palmer, D.L ., Beveridge, R.M., Upchurch, R., et al. (2005). Children's appraisals of maternal involvem ent in coping with diabetes: Enhancing our understanding of adherence, me tabolic control, and quality of life across a dolescence. Journal of Pediatric Psychology, 30 167-178. Wiegner, S. & Donders, J. (2000). Predictors of parental distress after co ngenital disabilities. Journal of Developmental and Behavioral Pediatrics, 21 271-277. Wiener, L., Mellins, C., Marhefka, S., & Battles, H. (2007). Disclosure of an HIV diagnosis to children: History, current research, and future directions. Journal of Developmental & Behavioral Pediatrics, 28, 155-166. Wiener, L.S., Vasquez, M.J., & Battles, H.B. (2001) Brief report: fathering a child living with HIV/AIDS: psychosocial adjustment and parenting stress. Journal of Pediatric Psychology, 26, 353-358. Williams, J., Wake, M., Hesketh, K., Maher, E., & Waters, E. (2005). Health-related quality of life of overweight and obese children. Journal of the American Medical Association, 293, 70-76. Winnick, S., Lucas, D. O., Hartman, A. L ., & Toll, D. (2005). How do you improve compliance? Pediatrics, 115, e718-724. World Health Organization (2005). AI DS cases reported to WHO 1979-1999. Report on the Global HIV/AIDS Epidemic UNAIDS/CO.13E. Yeni, P.G., Hammer, S.M., Carpenter, C.C., Coope r, D.A., Fischl, M.A., Gatell, J.M., et al. (2002). Antiretroviral treatment for a dult HIV infection in 2002: Updated recommendations of the International AIDS Society-USA Panel. Journal of the American Medical Association, 10 222-235. Young, G.S., Mintzer, L.L., Seacord, D., Castan eda M., Mesrkhani, V., & Stuber, M.L. (2003). Symptoms of posttraumatic stress disorder in pa rents of transplant re cipients: Incidence, severity, and related factors. Pediatrics, 111 725-731. Zeller, M.H., Roehrig, H.R., Modi, A.C., Daniels, S.R., & Inge, T.H. (2006). Health-related quality of life and depressive symptoms in adolescents with extreme obesity presenting for bariatric surgery. Pediatrics, 117 1155-1161.
85 BIOGRAPHICAL SKETCH Lisa Ingerski received her bachelors degr ee, with distinction, in psychology from the University of Virginia in 2003. She received her masters degree in clinical psychology from the University of Florida in 2005 and completed her pre-doctoral internship at Cincinnati Childrens Hospital and Medical Center in 2008.