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A program evaluation of a support group for children with sickle cell disease

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A program evaluation of a support group for children with sickle cell disease
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Cohen, Rachel M
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sickle cell disease
children
support group
intervention
Dissertations, Academic -- School Psychology -- Specialist -- USF   ( lcsh )
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government publication (state, provincial, terriorial, dependent)   ( marcgt )
bibliography   ( marcgt )
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ABSTRACT: Children with Sickle Cell Disease (SCD) face medical, psychosocial, and cognitive challenges, which may impede their social and academic functioning. These complications can be lessened through the implementation of comprehensive interventions. This study reviews one comprehensive intervention, a support group, for children with SCD and their families, and reviews the challenges faced by the children and family who participate in the support group as well as those who do not participate. The study has a mixed-method design because the families participated in focus groups, and they completed quantitative instruments, including a knowledge survey, a behavior rating scale, and an instrument to measure the degree that SCD affects one's life. Most children rated SCD as affecting their life a little bit and were knowledgeable in SCD. The children who did not participate in the support group reported less symptoms and a smaller impact on their lives than those who did participate. The results from the behavior rating scale did not reveal any significant behavior problems in these children; however, those who did not participate in the support group had higher ratings than those who did. These results imply that individuals with SCD who are less impacted by the disease may be less likely to attend a support group than those who are more impacted. Additionally, a theme analysis from the focus groups revealed key themes, such as keeping SCD a secret, getting made fun of, missing school, missing PE class, hospital visits, and experiences with pain crises. The findings from this study indicate that SCD does impact the life of children with the disease; however, the impact may be unknown to others and may differ among individuals. The results also imply that school personnel and other students in schools must be accurately informed about the manifestations of SCD to best promote healthy physical and psychosocial development in children with SCD. Finally, support groups can help to reduce symptoms and complications related to the disease.
Thesis:
Thesis (Ed.S.)--University of South Florida, 2004.
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Includes bibliographical references.
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by Rachel M. Cohen.
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Title from PDF of title page.
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oclc - 56389272
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usfldc handle - e14.375
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A Program Evaluation Of A Support Group For Children With Sickle Cell Disease by Rachel M. Cohen A thesis submitted in partial fulfillment of the requirements for the degree of Education Specialist Department of Psychological and Social Foundations College of Education University of South Florida Major Professor: Kathy Bradley-Klug P h D Lou Carey, Ph.D. Kathleen Armstrong, Ph.D. Date of Approval: April 14, 2004 Keywords: s ickle cell disease, children, support group, intervention, evaluation Copyright 2004 Rachel Cohen

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i Table of Contents List of Tables v List of Figures vi Abstract vii Chapter I: Introduction 1 Hop To It Program 4 Purpose 6 Research Questions 7 Hypotheses 7 Chapter II: Literature Review 9 Overview of SCD 10 Etiology of SCD 11 Implications of SCD 12 Medical Symptoms 12 Pain Crisis 12 Other Symptoms 13 Cognitive Impairment 13 Academic Impairment 16 Psychosocial Impact 18 Quantitative Studies 18 Qualitative Study 24 Mixed-Method Study 25 Summary 27 Interventions 28 Medical Interventions 29 Cognitive/Academic Interventions 30 Psychosocial Interventions 31 Chapter III: Methods 41 Hop To It Program 41 Setting 42 Participants 42 Independent Variables 45 Dependent Variables 46 Survey of Childrens Knowledge of SCD (survey) 46 Overview of the Knowledge of SCD Survey 46 Development of the Knowledge of SCD Survey 47

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ii Administration of the Knowledge of SCD Survey 49 Degree SCD Affects Life (DSCDAL) 50 Behavioral and Emotional Rating Scale 52 Research Design 55 Procedures 56 Recruitment of Participants 56 Obtaining Consent 57 Data Collection 57 Summary 61 Chapter IV: Results 62 Research Question 1 62 Knowledge of SCD Survey 63 Descriptive Statistics for Knowledge of SCD Survey 63 Item Analysis of Knowledge of Sickle Cell Disease Survey 64 Item Analysis of Pain Crisis Management Techniques 64 Item Analysis of Treatments of SCD 66 Summary of Knowledge of SCD Survey 67 Content Analysis of Focus Groups 67 Symptoms 70 Active Members 70 Non-Active Members 70 Pain Crisis Management 71 Active Members 71 Non-Active Members 72 Treatments for SCD 72 Active Members 72 Non-Active Members 73 Further Education on SCD 73 Summary of Content Analysis 74 Frequency of Attendance and Knowledge of SCD 74 Summary 76 Research Question 2 76 Degree Sickle Cell Disease Affects Life Survey (DSCDAL) 77 Overall Scores on DSCDAL 78 Item Analysis of the DSCDAL 82 Content Analysis of the Focus Groups 83 Hospital/Missing School 88 Active Members 89 Non-Active Members 89 Experience in School 89

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iii Active Members 89 Physical Education/Sports 89 Active Members 89 Non-Active Members 90 Telling People About SCD 91 Active Members 91 Non-Active Members 92 Summary 92 Frequency of Attendance and DSCDAL 92 Summary 94 Research Question 3 94 Behavioral and Emotional Rating Scale 94 Descriptive Statistics 94 Item Analysis 96 Frequency of Attendance and BERS Scores 96 Summary 97 Chapter V: Discussion 98 Hypothesis 1 99 Hypothesis 2 105 Hypothesis 3 108 Limitations and Future Research 109 Selection of Participants 110 Small Sample Size 111 Age Distribution in the Sample 113 Definition of Active and Non-Active Members 113 Lack of Pre-Test Data 114 Instrumentation 114 Future Research 114 Implications for School Psychologists 116 Educational Support for Children With SCD 117 Psychosocial Support for Children with SCD 117 Psychosocial Support for Caregivers of Children with SCD 118 Education for School and Hospital Personnel 118 Conclusion 119 References 120 Appendices 127 Appendix A: Knowledge of SCD Survey for Expert Panel 128 Appendix B: Expert Panel Results for Knowledge of SCD Survey 138 Appendix C: Answer Key for Knowledge of SCD Survey 141

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iv Appendix D: DSCDAL-Caregiver Version 144 Appendix E: DSCDAL-Childrens Version 145 Appendix F: Recruitment Flyer 153 Appendix G: Focus Group Questions 154 Appendix H: Content Analysis for Active Members 155 Appendix I: Content Analysis for Non-Active Members 171 Appendix J: Item Analysis of DSCDAL 175 Appendix K: Item Analysis of BERS 176

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v List of Tables Table 1 Number of Participants in Each Category 44 Table 2 Demographic Information for the Children 44 Table 3 Active Members Scores on the Knowledge of SCD Survey 64 Table 4 Percentage of Active Participants Who Correctly Identified Each Item on the Survey 65 Table 5 Content Analysis of Focus Group Themes Related to Knowledge Of SCD 67 Table 6 Descriptive Data for the Degree SCD Affects Life (DSCDAL) 80 Table 7 Stem and Leaf Diagram for Overall Scores on DSCDAL 81 Table 8 Content Analysis of Themes Related to SCD Affecting Life 86 Table 9 Mean and Median of BERS Strength Quotient 95 Table 10 Mean and SC Scores for Subtests of BERS 95

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vi List of Figures Figure 1 Relationship Between Total Number of HTI Events Attended And Score on Survey 75 Figure 2 Relationship Between Grade and Total Score on Knowledge Of SCD Survey 76 Figure 3 Comparison of DSCDAL Scores for Active Children and Caregivers And Non-Active Caregivers 79 Figure 4 Item Analysis of the Family Component of DSCDAL 84 Figure 5 Item Analysis of the Child Component of the DSCDAL 85 Figure 6 Correlation Between Events Attended and Scores on DSCDALChild Version 93 Figure 7 Correlation Between Events Attended by the Child and the Caregivers Score on DSCDAL-Caregiver Version 93 Figure 8 Relationship Between Frequency of Attendance Scores with The Strength Quotient on the BERS 97

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vii A Program Evaluation of a Support Group for Children with Sickle Cell Disease Rachel Cohen ABSTRACT Children with Sickle Cell Disease (SCD) face medical, psychosocial, and cognitive challenges, which may impede their social and academic functioning. These complications can be lessened through the implementation of comprehensive interventions. This study reviews one comprehensive intervention, a support group, for children with SCD and their families, and reviews the challenges faced by the children and family who participate in the support group as well as those who do not participate. The study has a mixed-method design because the families participated in qualitative focus groups and completed quantitative instruments, including a knowledge survey, a behavior rating scale, and an instrument to measure the degree that SCD affects ones life. Most children rated SCD as affecting their life a little bit and were knowledgeable in SCD. The children who did not participate in the support group reported less symptoms and a smaller impact on their lives than those who did participate. The results from the behavior rating scale did not reveal any significant behavior problems in these children; however, those who did not participate in the support group had higher ratings than those who did. These results imply that individuals with SCD who are less impacted by the disease may be less likely to attend a support group than those who are more impacted. Additionally, a theme analysis from the focus groups revealed key themes, such as keeping SCD a secret, getting made fun of, missing school, missing PE class,

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viii hospital visits, and experiences with pain crises. The findings from this study indicate that SCD does impact the life of children with the disease; however, the impact may be unknown to others and may differ among individuals. The results also imply that school personnel and other students in schools must be accurately informed about the manifestations of SCD to best promote healthy physical and psychosocial development in children with SCD. Finally, support groups can help to reduce symptoms and complications related to the disease.

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1 Chapter I Introduction Sickle Cell Disease (SCD) is a chronic hereditary disease that affects 1 out of every 400 African-American births and 1 out of every 1,000 to 1,400 Hispanic-American births. In addition, 1 out of every 12 African-Americans is a carrier of the disease (Charache, Lubin, & Reid, 1989). The most common symptoms of the disease are chronic anemia, acute and chronic tissue injury, and pain crises (U.S. Department of Health and Human Services, 1993). Individuals with SCD also can suffer from strokes that may cause neurological and cognitive impairment (Adams, Ohene-Frempong, & Wong, 2001) and are at risk for academic failure, as well as psychosocial maladjustment (Brown, Armstrong, & Eckman, 1993). Further, family functioning can be impaired because the disease requires a high level of care and financial burden on the family (Barbarin, Whitten, Bond, & Conner-Warren, 1999). To counter several of these negative effects, interventions, such as pain management, coping skills training, counseling, and education/support groups can be provided for children and families (Collins, Kaslow, Doepke, Eckman, & Johnson, 1998; Telfair & Gardner, 1999). Specifically, education/support groups can provide an opportunity to implement many of these interventions and can target specific medical, cognitive, and psychosocial risk factors that an individual with SCD may encounter. While interventions, such as support groups, are

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2 purported to promote positive effects on children and families affected by SCD (Telfair & Gardner, 1999; Kaslow et al., 2000), there is little documentation of the impact of these interventions. The research to date on the effectiveness of interventions for children with SCD is limited by several factors. First, the methodology used in many studies does not adequately describe the impact of these interventions (Telfair & Gardner). Second, qualitative data are often neglected in studies that use only quantitative measures. Third, the evaluations rarely include direct information from the children who participated in the intervention. Each of these limitations will be elaborated upon in the following paragraphs. The methodology in program evaluations of interventions for individuals with SCD is limited by measures that are not sensitive to change or are not relevant to the outcome, a small sample size, and the failure to include a comparison or control group (Kaslow et al., 2000; Telfair & Gardner, 1999). The use of measures that are not sensitive to small changes can mask positive effects that result from the intervention or can minimize significant differences between the treatment and control group. This is particularly true when scores are not clinically significant at the onset of the intervention (Kaslow et al., 2001). It also is important to include as many family members or informants in the study as possible. Evaluations that include just one informant can be biased (Ievers, Brown, Lambert, Hsu, & Eckman, 1998). Finally, it is important to use a control group to rule out confounding variables that could be responsible for the findings (Telfair & Gardner, 1999; Brown, Buchanan, Doepke, & Eckman, 1993). The second limitation is the absence of qualitative data in studies evaluating psychosocial interventions for children with SCD. Qualitative measures, such as

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3 anecdotal data, focus groups, or interviews, used in evaluations of interventions can provide evidence of a change or positive impact that is not detected by quantitative measures (Kaslow et al., 2001; Butler & Beltran, 1993). Qualitative data also allow the researcher to use the words of the individual to describe the participant's experience (Thomas & Taylor, 2002). Therefore, it is important to include qualitative data in program evaluations. It also is important to obtain direct information from the individual who participated in the intervention. Often the caregiver is the informant for evaluations of interventions for children with SCD. While the caregivers provide valuable information, they may not be aware of all the aspects of the childs experience with the intervention. It is therefore important to capture both the caregivers and the childs experience with and perception of the intervention. Despite the importance of gathering information from the child, there is a paucity of studies that directly interview children to learn of their experiences (Butler & Beltran, 1993; Kaslow et al., 2001; Thomas & Taylor, 2002). Therefore, it is important to gain information from the children and caregivers in a program evaluation of an intervention for children. The proposed study addressed the limitations mentioned above by using sound methodology, by obtaining both quantitative and qualitative information, and by obtaining data from both the caregivers and the children to evaluate a local support group for families and children affected by SCD called the Hop To It (HTI) program. The study compared the children and families who were active members in the group with the children and families who were not active members. The characteristics of both groups were described and compared.

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4 Hop To It Program The Hop To It program (HTI) is a support group for families of children ages 512 years who are affected by SCD and reside in the Tampa Bay area. Sponsored by the Children's Cancer Center, the HTI program provides free academic and social support to these families and is funded by donations from the community. The mission of the program is to educate the community about the implications and management of the disease and to provide children and families affected by SCD with educational support and increased access to community and medical resources. With these services such as these, it is hypothesized that the patient will be a more active member of the health care team and will be better able to take care of him or herself (Logan, Radcliffe, & SmithWhitely, 2002). To provide these services, the program offers four components: tutoring, monthly events, lunch and learn programs, and school presentations. Each of the four components will be discussed briefly. The tutoring component provides weekly academic assistance to the children in the program. This is important because studies suggest that children with SCD are at risk for cognitive impairments and academic failure (Brown, Armstrong, et al., 1993; Fowler, Whitt, Nash, Atkinson, Wells, & McMillan, 1988; Swift et al., 1989; Wasserman, Wilimas, Fairclough, Mulhern, & Wang, 1991). In addition to the tutoring, monthly events are held for members, such as an annual back to school kick off party, a Tampa Bay Buccaneer game, a Tampa Bay Lightning Hockey Game, and a family fun day. The events give the children an opportunity to socialize and interact informally with each other and the staff in the program. This is important because many children with SCD are at risk for impaired social interactions (Lemanek, Buckloh, Woods, & Butler, 1995;

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5 Brown, Armstrong, et al.). The component for the caregivers is called the lunch and learn program and is held a few times a year. This program is a provided lunch and speaker on topics relevant to families affected by SCD, such as obtaining Medicaid or treating a pain crises. It is important to educate caregivers because the more educated caregivers are, the more likely they are to utilize health care services and better manage the disease (Logan, et al., 2002). Finally, the program director provides consultation to the schools of the children in the program by meeting with school personnel to inform them about the symptoms and care for SCD. This follows a recommendation by Bonner, Gustafson, Schumacher, and Thompson (1999) that school personnel must be educated on the medical symptoms and complications of SCD. These presentations also are intended to build communication between the medical and the educational community to promote the health of the child. Therefore, the HTI program provides academic, social, and family support for children with SCD. However, despite the numerous and diverse services offered, only about one half of the applicable families in the Tampa Bay area who have a child with SCD (age 5-12 years) attend the program events or use the services. The reasons that families were not participating was unclear. In addition, the effects of the program on the current participants had never been reviewed in a systematic evaluation. This systematic evaluation of the program provided information on the efficacy of the services, methods to improve services in the future, and the barriers to participation. Ultimately, the information gained in this systematic evaluation can guide the development of a more integrated system of care for academic, health, and social services for children and their families affected by SCD.

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6 Purpose The purpose of this study was to conduct a systematic evaluation of the HTI program. This involved collecting quantitative and qualitative data across two groups of children and families affected by SCD (active and non-active members in the HTI program) to compare the differences between the families in the two groups. The differences between the two groups highlighted the characteristics that serve as enablers and barriers toward participation in a support group. This study will benefit the children and families affected by SCD, the personnel who work with these individuals, and the academic community. This information will benefit the children and families affected by SCD because it will contribute to the goal of developing an integrated system of care for their medical, academic, and social services. The information will benefit the medical, health, and mental health personnel who work with these children and families, such as the HTI program, by providing an understanding of service use among this population. Finally ,this study will benefit the academic community by providing rich information about social and emotional experiences of children with SCD, which will guide future interventions. The information collected will be extremely useful to the Hop to It program because it provided data to help improve their services. This study determined whether the program met the goals documented in the mission statement. The study provided information on the participants' experiences with SCD. Through interviews, rating scales, and focus groups, qualitative and quantitative information was gathered from both groups and compared.

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7 Research Questions The current study was designed to answer the following research questions: 1. Is there a difference in the knowledge of the symptoms of SCD, pain crises management, and various treatment methods between the children with SCD who are active members in the Hop To It program and those who are not? 2. Is there a difference in the beliefs about how SCD affects ones life between: a. children with SCD who are active members in the Hop To It program and those who are not? b. caregivers of children with SCD who are active members in the Hop To It program and those who are not? 3. Is there a difference in the behavioral and emotional functioning as measured by the Behavioral and Emotional Rating Scale (Epstein & Sharma, 1998) of the children who are active members in the Hop To It program and those who are not? Hypotheses: This researcher proposed the following outcomes for this study: 1. The children who are active members in the Hop To It program will be more knowledgeable in the symptoms of SCD, pain crises management, and various treatment methods than the children who are not active members. 2. The children and families who are active members in the Hop To It program will believe that SCD interferes with or inhibits fewer areas of their life than the children and families who are not active members.

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8 3. The children who are active in the Hop To It program will have more behavioral and emotional strengths than the children who are not active members.

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9 Chapter II Literature Review Sickle Cell Disease (SCD), a chronic hereditary disease affecting 72,000 Americans (National Institute of Health [NIMH], 1996) has medical, cognitive, and psychosocial effects on individuals that range from mild to severe. The most common symptoms are chronic pain crises and anemia (Charache, Lubin, & Reid, 1989), and some patients with SCD suffer from strokes that can cause neurological and cognitive impairment (Adams, Ohene-Frempong, & Wang, 2001). In addition to possible cognitive deficits, children with SCD are frequently absent from school due to medical conditions, placing them at-risk for academic and psychosocial problems (Brown, Armstrong, & Eckman, 1993). The stresses on the child require a high level of care and financial burden on the family and can impair family functioning (Barbarin, Whitten, Bond, & ConnerWarren, 1999). To counter several of these negative effects, interventions are often provided for individuals with SCD, such as medical treatments and comprehensive education/support groups for the child and family (Collins, Kaslow, Doepke, Eckman, & Johnson, 1998; Telfair & Gardner, 1999). As these interventions can prevent or decrease some of the negative effects of the disease, it is important to evaluate which components of the interventions are effective. Despite the importance of documenting effective practices for children with SCD, there are few publications on program evaluations of

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10 these interventions. This literature review will present those interventions for children with SCD that are documented following an overview of the literature on the impact of the disease. This literature review will provide an overview of the types of SCD, the etiology of the disease, and information on the medical, cognitive, and psychosocial implications of the disease. Following a discussion of the overview and implications of the disease, the medical, cognitive, and psychosocial interventions will be presented. While this discussion of SCD focuses on children, some areas will be supplemented with the manifestations and interventions for adolescents and adults with SCD due to the limited literature on children with SCD. Overview of SCD There are three types of SCD determined by the genotype, or genetic make-up, of the patient. A normal gene that produces hemoglobin, the molecule responsible for transporting Oxygen in the blood, is called Hb A, while abnormal hemoglobin genes are called Hb S and Hb C, or thalassemia (Brown, Armstrong et al., 1993). A person who has the heterozygous pairing of one normal hemoglobin gene and one abnormal hemoglobin gene has sickle cell trait. People with the trait do not actually have the disease, but they are a carrier and can pass the disease along to their children. People with a combination of two abnormal genes have a type of SCD. There are three main types of SCD that vary in severity. The first type is sickle cell anemia (SCA or HbSS), which is caused by the homozygous pairing of two abnormal hemoglobin genes, Hb S and Hb S. People with this type may experience the most severe symptoms (Brown, Armstrong, et al.) and experience a higher disability stress (pain crises, ER visits, and length of hospital visits)

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11 (Casey, Brown, & Bakeman, 2000). The two other types, sickle cell hemoglobin C (Hb SC) and HbS-thalassemia, are caused by the heterozygous pairing of two abnormal hemoglobin genes, Hb S and Hb C, sometimes called thalassemia. They tend to be less severe. (Brown, Armstrong et al.). Etiology of SCD The name sickle cell disease, or sickle cell anemia, denotes two important characteristics of the disease: the chronic anemia and the sickled shape of the red blood cells. Anemia, a condition caused by the shortage of red blood cells, is a result of the decreased life span of the red blood cells. The red blood cells in an individual with SCD only live 10-20 days in comparison to the 120 days that red blood cells in a healthy individual live. Since the body does not produce more red blood cells to compensate, there is a constant shortage of red blood cells, causing anemia (NIH, 1996). The reason that the blood cells are sickled is because the gene that produces hemoglobin, the molecule responsible for transporting oxygen in the blood, is defective in people with SCD. In a healthy person, hemoglobin transports and releases oxygen in the red blood cells as they travel through blood vessels from the lungs to the tissue of the organs (Morse & Shine, 1986). In a person with SCD, when their hemoglobin molecules release their oxygen to the tissues, they form rod-like structures and cluster together with other hemoglobin molecules. The clusters of rod-like hemoglobin cause the red blood cell to become rigid and sickled (Morse & Shine). The sickled red blood cells have difficulty passing through the blood vessels and get stuck, causing vassocclusion or blockages. The blockages prevent oxygen from reaching the organs and cause episodes of severe pain in the patient called a pain crisis (Morse & Shine). Thus, both pain crises and anemia are the

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12 most common medical symptoms of the disease; however, there are many other symptoms and complications that result from the disease. Implications of SCD Medical Symptoms Pain crisis. The most common and debilitating symptom of SCD is the pain crisis, which can last for a few hours to a few months in some cases (NIH, 2002). Pain crises occur most frequently in the muscles, bones, and abdomen of the SCD patient but can affect any area of the body (Morse & Shine, 1986). While pain crises vary in frequency, location, and intensity, many children and caregivers report similar experiences related to the crises. Graumlich, Powers, Byars, Schwarber, Mitchell, and Kalinyak (2001) interviewed 25 children with SCD and their caregivers about their experience with pain crises. The study looked at aspects related to the crises, such as the loci of the pain, the triggers, the words used to describe the pain, and the family's perception of the seriousness or severity of the disease and the pain. The caregivers and children in the study reported the arm, knee, stomach, and back as the most frequent sites of pain. Caregivers reported environmental conditions (i.e., weather), physical conditions (i.e. exercise), infectious conditions (i.e., colds/flu), and emotional conditions (i.e., anger, anxiety) as the most common triggers of the pain crises. When asked to describe the pain, children used words like "squeezing," "screaming," and "punishing," while caregivers described the pain as "pins and needles," "fearful," "stinging," and "cruel." When describing the severity of the crisis, over 64% of the children in the study considered SCD and SCD pain to be either a serious/big or very serious/big problem, and over 57% of both the parents and

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13 children reported being "somewhat" or "very" fearful that the pain crises may lead to the death of the child. Therefore, pain crises can have a large psychosocial impact on the child and family. Other symptoms. In addition to coping with pain crises, patients with SCD are at risk for a multitude of complications such as pneumococcal complications, jaundice (Lemanek, Buckloh, Woods, & Butler, 1995) meningitis, cerebral vascular infarction, splenic involvement, enuresis, osteomyelitis, and neocrosys of the femoral head (Hurtig & Viera, 1986). As SCD affects the red blood cells, the disease can distress almost any system in the body, such as the ophthalmological, pulmonary, cardiac, muscoskeletal, immunological, or central nervous systems (Lemanek et al., 1995). Children with SCD also can have retarded or delayed growth and sexual development, and males may experience priaprism, a painful, undesired erection (Hurtig & Viera, 1986). In addition, SCD can cause neurological impairment, particularly if the individual has a cerebrovascular accident, or stroke (Kral, Brown, & Hynd, 2001). These adverse medical complications are not only physically debilitating, but can be mentally debilitating and can place children at risk for developing impairments in both cognitive and academic functioning. Cognitive Impairment The medical symptoms for SCD, particularly strokes, place a child at risk for cognitive or neurological impairment. About 9% of children with SCD ages 2-16 are at a high risk for developing a stroke (Adams, Ohene-Frempong, & Wang, 2001), and those who do develop a stroke are at risk for neurological deficits that may be as severe as a child who experienced a traumatic brain injury (TBI) (Bonner, Gustafson, Schumacher,

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14 & Thompson, 1999). Therefore, children with SCD are at risk for impairment in intellectual functioning. Hariman, Griffith, Hurtig, and Keehn (1991) compared children with SCD who had experienced one or more strokes with children with SCD who had not experienced a stroke. The researchers found that the mean IQ (m=68.4) of children who had experienced a stroke was significantly lower than the mean IQ (m=91.4) of those who had not experienced a stroke. This finding indicates that cognitive impairment can be related to experiencing a stroke. However, the sample size of this study was small (n=14) and the IQ scores prior to the strokes were not known. Therefore, it was not possible to know if strokes were the cause of the lower IQ scores. To determine if the occurrence of a stroke was related to impairment in intellectual functioning, Thompson, Armstrong, Link, Pegelow, Moser, and Wang (2003) conducted a longitudinal study of 413 children with SCD who either had not had a stroke (normal), had a silent infarct, or had a stroke. The results indicated that the silent infarct and stroke subgroups had lower IQ scores than the normal subgroup. There was a difference in the full-scale IQ of 3.8 points between the normal subgroup and the silent infarct subgroup and 14.4 points between the normal subgroup and the stroke subgroup. In addition, the authors found that the full-scale IQ scores declined over time in all three groups. This indicates that all children with SCD may be at risk for cognitive impairment, regardless of the occurrence of a stroke or silent infarct. Other studies have found subtle cognitive differences in children with SCD who have not had strokes compared to children without SCD, but there is not a consensus in this area of research. Chodorkoff and Whitten (1963) did not find that children with SCD

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15 experienced more impairment in intellectual or psychological functioning than their siblings. However, later research has found deficits in fine motor control, visual shortterm memory, visual-motor integration (Chapar, Doctors, Radel, & Coupey, 1986) lower scores on academic reading and spelling tests (Fowler, Whitt, Nash, Atkinson, Wells, & McMillan, 1988), and lower full scale IQ scores compared to scores of siblings (Swift et al., 1989). Similarly, Wasserman, Wilimas, Fairclough, Mulhern, and Wang (1991) found that children with SCD had lower Performance and Full Scale IQ scores when compared to their siblings as well as a matched control group of minority children. Although this study did not find significant differences in achievement between the groups, the results did show that younger children with SCD (less than 12) had significantly lower scores on an age-appropriate version of the Luria-Nebraska Neuropsychological Battery (LNNB) (Golden, Purisch, Arnold, Hammeke, & Thomas, 1991), suggesting some neuropsychological deficits, particularly in language. However, in another study by Brown, Buchanan, Doepke, and Eckman (1993), socioeconomic status (SES) contributed to the differences in scores on tests of simultaneous processing and language in children with SCD and their siblings. Therefore, the difference in scores may be due to factors other than SCD or may be complicated by SES. The discrepancy in the results of these studies and the small sample sizes prevent definitive conclusions in this area. In addition, the traditional methods of assessing neurological deficits used in these studies may not have identified the neuropsychological sequelae involved in children with SCD. For example, narcotic analgesic medications that are frequently given for pain may suppress reaction time on cognitive tasks, but this is rarely considered in the research (Brown, Armstrong et al., 1993). Other factors rarely

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16 considered but identified by Brown, Armstrong, and Eckman include the various effects of the disease, the poor disease classification in many studies, the confounding effects of low socioeconomic status factors, decreased opportunities to learn, and physical disabilities. Despite these limitations, children with SCD may be at risk for the development of cognitive or learning problems, which can leadto academic impairment in school. Academic Impairment Academic functioning may be impeded by some of the same factors mentioned that place children at risk for cognitive deficits, such as strokes, and other factors, such as a high absentee rate. To determine how SCD affected academic functioning, Richard and Burlew (1997) compared children ages 7 to 11 with and without SCD on the following variables: grades in mathematics, grades in reading, percentile scores on the California Achievement Test (CAT), grade retention, and attendance in school. The two groups were matched by age, sex, and socioeconomic indicators on academic performance. Results demonstrated that there was no difference between the two groups on any of the variables; however, both groups of children with SCD and children without SCD had high rates of absenteeism, high retention rates, and below average scores on the CAT in math and reading. The similarities in academic functioning between the two groups highlights the importance of using a control group that is matched for age, sex, and socioeconomic status. In addition, it is important to account for variables, such as high absenteeism and retention rates when evaluating academic performance in children with SCD.

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17 Eaton, Haye, Armstrong, Pegelow, and Thomas (1995) used absenteeism as a variable and compared children with SCD who had high absenteeism rates (m=35.4 days/year) and low absenteeism rates (m=16.8 days/year). The results indicated that both groups were one standard deviation below the mean on a standardized achievement test, but there was not a significant difference in the academic performance between the two groups. It is important to note that the group with the lower absenteeism rate in this study also had missed a significant amount of school too, which indicates that absenteeism could have contributed to the lower performance. However, it is unclear what rate of absenteeism would contribute to decreased academic performance. Therefore, further research should be conducted on the effects of absenteeism on SCD using a control group with a lower absentee rate than the one used in this study. In addition, there may be other factors that contribute to the lower scores, and these may be factors other than decreased academic performance that result from frequent absences. Frequent absenteeism also can disrupt social activities in school, and parents can lose their jobs because they have to take off work each time their child misses school. These qualitative aspects are typically not included in data collection using standardized instruments. One method that would allow caregivers and the children with SCD to discuss some of these factors would be to include qualitative methods in the study, such as focus groups and semi-structured interviews. These methods could provide a new direction to the current research and could uncover new psychosocial factors or problems that have not been studied.

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18 Psychosocial Impact Psychosocial risk factors can predict a child's adaptation more than biomedical risk factors (Burlew, Telfair, Colangelo, and Wright, 2000). Research from the 1970s and 1980s indicated that many children and adolescents with SCD experience psychosocial problems (Lemanek, et al., 1995) while current research indicates that there is a range of adaptation to the disease (Ievers, Brown, Lambert, Hsu, & Eckman, 1998; Gil, Williams, Thompson, and Kinney, 1991; Casey, et al., 2000). One reason for the inconsistency of results is that earlier research focused more on psychosocial maladjustment, while current research includes positive implications of the disease, such as resiliency and coping (Lemanek, et al.). The following sections will review the research on both psychosocial maladjustment as well as coping skills that are found to buffer some of the harmful effects of the disease. In addition, both quantitative and qualitative studies and a mixed methods study will be reviewed to provide a richer profile of the sickle cell experience. Quantitative studies. Research demonstrates that the impact of SCD varies depending on the age and gender of the individual. Hurtig and White (1986) found more behavior problems and maladjustment in adolescents with SCD compared to children with SCD Morgan and Jackson (1986) also found that adolescents show more psychosocial problems than children with SCD. They found that adolescents with SCD were less satisfied with their bodies, spent less time in social situations than their peers, and showed more signs of depression. These behaviors may be due to the difficulty that adolescents have in coping with SCD (Baskin et al., 1998). They may be compounded by

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19 typical adolescent stresses, such as body changes and difficulty fitting in with peer groups. Gender also influences the psychosocial impact of the disease in areas such as problem behavior and disease disruption. Hurtig and White (1986) found different psychosocial problems in boys than girls. Females tended to have more internalizing problems while males seemed to have more academic and behavior problems, such as acting out and social maladjustment. However, because a control group was not utilized in this study, it is difficult to determine if these psychosocial differences are unique to individuals with SCD or are characteristics of the general population. Barbarin et al. (1994) also found significant gender differences in daily disruption of the disease and on retention rates. In their study, Barbarin et al. performed a psychosocial assessment to understand the correlation between illness adjustment, social adjustment, academic adjustment, psychological adjustment, family adjustment, and demographic characteristics, such as gender. The authors recruited 327 children from a Midwestern hospital, ages 4 to 17, who were diagnosed with SCD. Barbarin et al. used an interview that contained both open-ended questions and Likert scales to provide numerical ratings to the questions. The interview also assessed the frequency of parental concerns in different domains by asking the caregiver to indicate whether certain areas were a concern for them. The researchers found a higher incidence of illness disruption in girls and a higher incidence of retention in boys. There also was a slightly higher percentage of boys who demonstrated academic adjustment problems (i.e., retention, poor motivation) and a slightly higher percentage of females who had psychological adjustment problems (i.e.,

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20 anger, moodiness, hopelessness, depression, shame). Therefore, because the problems for boys and girls are slightly different, as they are in the general population (Pharr & Barbarin, 1991), it is important to consider gender differences when developing interventions. The results showed that both male and female subjects both reported the most problems in the areas of activity disruption, teasing, and delayed growth. Twenty-five percent of the children were found to have emotional adjustment problems, including symptoms of anxiety and depression, and over 20% had social or academic problems. Specifically, children who had experienced pain reported more depression, anger, hopelessness, and were more ashamed than children who had not experience pain. In addition, the parents of the children who had experienced pain reported more fear and worry than parents of children who had not experienced pain. In addition to gender and age, income was explored as a factor in psychosocial adjustment. Barbarin et al. (1994) found that being in a low-income bracket increased ones barriers to medical care, but there was not a significant difference in the adjustment of children based on income of the parent. However, Lemanek, Moore, Gresham, Williamson, and Kelley (1986) did find that children from low SES families showed more adjustment problems than children from high SES families. In this study, the median family income was $6,000 per year, and therefore, it is important to consider SES as many patients with SCD fall in a low income bracket. It also is important to investigate ways to eliminate barriers to medical care in lower-income families. This study should be commended for using a large sample size. Many studies that assessed the psychosocial functioning in children used a small sample size. One

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21 limitation in this study, however, was the absence of any standardized measures. While the assessment interview provided comprehensive information, the psychometric properties of the interview are not known. The authors chose not to use standardized instruments because of the bias towards psychopathology (Barbarin et al., 1994). Now, there are standardized instruments that are strength-based, such as the Behavioral and Emotional Rating Scale (BERS: Epstein & Sharma, 1998) that can provide a more positive and standardized assessment. Another way that assessment can be more positive is by looking at the coping and protective factors of the children and families that prevent some of the negative effects of the disease. Adaptive family function and cohesion in families helped to buffer some of the effects of caring for a child with SCD in a study by Ievers et al. (1998). The researchers asked 67 caregivers of children with SCD to complete several instruments, such as those that measured child stressors (Child Behavior Checklist, disease severity), psychological adaptation of the caregiver [Symptom Checklist-90 Revised (SCL-90-R); (Derogatis, 1983)], and family functioning [Family Adaptability and Cohesion Evaluation Scales-II (FACESII); (Olson et al., 1983)] The results of the study demonstrated that cohesive families of children with behavior problems reported less symptoms against hostility than less cohesive families. This indicates that cohesiveness is a buffer against hostility. A similar result was found when the FACES-II Cohesion measure was replaced by the FACES-II Adaptability measure. Family adaptability also was a buffer for hostility. High scores of family cohesion were found to buffer significant effects of depression and to buffer some effects of anxiety in the caregiver, while only the effects of depression were significant. While

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22 adaptability and cohesion were linked to caregiver functioning, disease severity was not found to be related to parental psychological adaptation. This result was similar to the findings of other studies (Brown, Armstrong et al., 1993; Noll, Swiecki, Garstein, & Vannatta, 1994) that failed to find a correlation between disease severity and child adjustment. While this study highlights the importance of family functioning on child and parent adjustment, Ievers et al. (1998) mentioned the limitation that all measures were completed by the same informant (caregiver) which may have resulted in some of the correlation among measures. Therefore, future research should include multiple informants or methods of assessment to eliminate this bias. Despite the bias, this study implies that family factors can buffer some of the negative effects of SCD. Similarly, Gil et al. (1991) found that the way parents cope with the disease can affect a childs activity level, medical visits, and the way the child copes with the disease. Parents with good coping strategies had children with lower levels of negative thinking and higher activity levels than children of parents with high levels of negative thinking. The children with high levels of negative thinking also suffered more psychological distress during painful episodes than children with better coping strategies and had more internalizing and externalizing behavior problems than the former group. While this study was not able to show a significant causal relationship between coping and functioning because disease severity could have caused the use of negative coping strategies, a clear relationship did exist between the two. Therefore, there is a potential for the coping strategies of both the parents and the child to greatly impact the childs well-being.

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23 Casey et al. (2000) also examined the risk and resilience factors in the psychosocial functioning of children with SCD. The authors looked at 118 children and adolescents receiving treatments for SCD at a comprehensive National Institute of Health Sickle Cell Center. Recruitment was conducted by the physician at the center, and all patients who were approached chose to participate. The mean age of the participants was 10 years and the mean grade was 3.9. The majority of caregivers were mothers (91%), but others were fathers, grandparents, aunts, and uncles. Of those caregivers, 21.2% had no high school degree, 33.1% had a high school degree and 45.8% had an education beyond high school. In addition, the majority of the caregivers made less than $10,000 per year. Each caregiver was given a series of instruments to complete. The results found correlations among several variables. There was a positive correlation (.20) between severity of disability as measured by type of SCD (HBSS or HBSC and beta-thalassemia) and disability stress as measured by a composite score of pain crises, ER visits, and length of hospital stay. This indicated that the more severe the disability, the more daily stress the child had. Despite this, there was no significant relationship found between disease severity and maladjustment, as measured by the Child Behavior Checklist problem scale (CBCL; Achenbach & Edelbrock, 1991). However, there was a negative correlation (-.46) between child maladjustment and adaptive behavior (ability of child to perform age appropriate activities), as measured by the Vineland Adaptive Behavior Scales (Sparrow & Cicchetti, 1989). This indicated that as adaptive behavior increased, maladjustment decreased. Consistent with other research (Barbarin, et al., 1994), boys had a higher score on maladjustment than girls. Similarly, there was a negative

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24 correlation (-.34) between child competence as measured by the CBCL Competence Score (CBCL; Achenbach & Edelbrock) and child maladjustment Finally, there were significant positive correlations between adaptive behavior and family cohesion and family adaptability as measured by the FACES-II (Olson, Russell, & Sprenkle, 1983) These results were consistent with the research on maladjustment and competence in the general population. The findings in these studies supported Wallander, Varni, Babani, Banis, and Wilcox's (1989) model of risk-resistance that hypothesizes that a childs adjustment is affected by the way he/she copes with stress and is moderated by both the severity of their disease and their functional independence or adaptive behavior. Therefore, the way a child copes with stress is affected by their interpersonal and ecological factors. These studies supported this model because the adaptive functioning was negatively correlated with maladjustment (Casey et al., 2000), indicating that adaptive functioning can moderate some of the effects of maladjustment. In addition, ecological factors, such as family cohesion and adaptability can impact adaptive behavior and decrease hostility (Ievers et al., 1998). These findings are important because adaptive competency and family cohesion and adaptability can be improved through family-based comprehensive interventions. These interventions will be discussed in the psychosocial intervention section. Qualitative study. The majority of the studies mentioned provided quantitative information on the psychosocial aspects of SCD. While the studies provide an in-depth analysis of psychosocial factors, quantitative studies are not able to fully capture the experiences of the participants. To understand the psychosocial aspects of the disease

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25 from the perspective of the individuals with SCD, qualitative research using interviews and focus groups were conducted. To date, there has only been one study that has used focus groups to understand the experience of individuals with SCD. A qualitative study by Thomas and Taylor (2002) highlighted the difficulties and complications of growing up with and living with SCD. The authors interviewed adult patients with SCD about their childhood and current experiences with SCD. The study revealed that adult patients with SCD recalled early memories of experiencing severe pain crises, frequent hospitalizations requiring removal from their home, and parents having difficulty coming to terms with their diseases and being overprotective (Thomas & Taylor). Most of the participants reported an awareness of the impact of sickle cell on their significant others because significant others found it difficult to deal with the constant pain and suffering of the disease. Many reported that their significant others reacted to their suffering with anger, frustration, and helplessness, making the condition even worse (Thomas & Taylor). This valuable information could not have been obtained using traditional quantitative measures. Mixed-method study. The previous study provided rich information about the childhood experience with SCD; however, there is a paucity of studies that interview the children themselves to learn of their experience. There also is a paucity of studies that use mixed-methods to obtain this information. A study by Gentry, Varlik, and Dancer (1997) used mixed-methods by interviewing the children and administering a survey about selfesteem, family and social relationships, experiences of anxiety, depression, anger, denial, and a quiz about the knowledge of SCD. The survey included statements about selfesteem, family and social relationships, experiences of anxiety, depression, anger, and

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26 denial. The child was required to point to a picture of the corresponding facial expression on a Likert scale of 1-very sad to 5-very happy to indicate how sad or happy they felt about the statement. The results were determined by taking the mean score for each response. The participants in the study were 12 stroke-free children with SCD ages 6-11. All participants were African American. In general, these children were happy about their self, had good self-esteem, and were happy about the relationships with their mother. The children were more upset about talking about SCD to others, having the disease, and with social relationships. Their biggest complaint was not being able to play like healthy children and being teased. Missing school also was a concern. When given a quiz on the knowledge of sickle cell disease, most were uninformed about specific aspects of the disease but were aware of the medical and health precautions. However, there was a wide range of scores, and the mean may not truly represent the group. Large reported standard deviations indicated variability in the data, and the means may not have been truly represented the overall perception of the children. The sample size also was extremely small, and there was no mention of the development or the psychometric properties of the instrument. Despite these methodological problems, this study did use a mixed-method approach by obtaining both quantitative and qualitative data. Future research in this area should include interviews or focus groups with more open-ended questions that would allow the children to freely express themselves. The answers could be transcribed and analyzed for themes. Qualitative components, such as interviews and focus groups, supplement quantitative studies with rich information that cannot be obtained from standardized methods. Due to the

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27 complexities of living with SCD, mixed-method designs are useful to provide a comprehensive picture of the results. Summary The previous studies on the psychosocial manifestations of SCD highlight salient social and emotional features of the disease. The psychosocial problems vary by age and gender and can range from depression and hopelessness, to impaired peer and family relationships. However, research shows that adaptive behavior, good coping skills, and positive family relationships can combat some of the negative effects of the disease. Therefore, interventions should be implemented that focus on teaching these skills to children and that include the whole family as part of the intervention. Interventions Interventions may or should attempt to modify some of the debilitating medical, cognitive, psychosocial effects of SCD. When developing or implementing an intervention for children with SCD, clinicians and practitioners should take a longitudinal-biopsychological approach in order to provide comprehensive care to the child and family (Telfair, 1994). In addition, interventions must include medical, academic/cognitive, and psychosocial support to cover the possible risks that a child with SCD may experience. This section will briefly review medical and academic interventions and thoroughly cover the psychosocial interventions that have been documented in the literature. The review will focus on those interventions that are empirically sound. Many of interventions covered are based on research with adults not children but have been included due to the paucity of interventions that target children. It is hypothesized that many of the interventions used with adults also are helpful to

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28 children, but more research is needed in this area to determine if there is support for this hypothesis. Medical Interventions Medical interventions can begin as soon as an infant is born with SCD and should continue throughout the individual's lifetime. It is important that these medical interventions begin as early as possible because there are several preventative measures that can be implemented as soon as an infant is born with SCD. The earliest procedure that can be conducted is routine screening in all infants for SCD. Most states now screen babies when they are first born to determine if an infant has SCD (U.S. Department of Health and Human Services, 1993). If the infant does have SCD, it is recommended that the caregivers give the infants child prophylactic penicillin beginning at two months to reduce the chance of pneumococcal infection and early death (NIH, 2002). It also is important that the infant receives all his or her immunizations, such as the H.influenzae and the Streptococcocus pneumonia, because these two diseases are common causes of death in children with SCD (U.S. Department of Health and Human Services). In addition, health care providers should educate the parent on the symptoms and management of SCD. Children with SCD should be closely followed by a health care provider. It is important that they get a periodic complete blood count (CBC) and liver and renal function tests to detect any evidence of organ damage (U.S. Department of Health and Human Services, 1993). In addition, home management of SCD is important to the wellbeing of the child. Parents must help keep the child hydrated as well as avoid cold weather and immersion in cold water. Cold temperatures may slow the circulatory system

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29 and promote a vasocclusive episode, or pain crisis (U.S. Department of Health and Human Services, 1993). Therefore, caregiver education is crucial in the care of a child with SCD. There are some medical treatments that may reduce the symptoms, such as analgesic medications, hydroxyurea, bone marrow transplants, and the possibility of gene therapy in the future. Patients with SCD are often given analgesic medications, such as morphine or codeine, for their pain when they are having a pain crisis. Hydroxyurea is an anticancer drug that was found to reduce the frequency of pain crises and acute chest syndromes. Patients who took this drug needed fewer blood transfusions (Charache et al., 1995). However, the efficacy of this drug for sickle cell disease is still questionable, and the long term effects are not yet known (Halsey & Roberts, 2002). It can be concluded that the use of this drug for SCD is still in the preliminary stages. Blood marrow transplants appear to cure some very fortunate children of the disease (Walters et al., 1996), but transplants have not been successful for all children. It is difficult to find a donor of blood marrow because the marrow must be from a healthy matched sibling, which only occurs in about 18% of children with SCD (NIH, 1996). Finally, researchers have been exploring gene therapy as a cure for SCD by either inserting a hemoglobinproducing gene into the bone marrow of people with SCD or by turning off the defective gene and activating another gene to produce hemoglobin. Both approaches are in an early stage, but progress is being made and there is a possibility for a cure one day (NIH). With these rapid advances in medicine leading to a possible cure for the disease, it is important that caregivers of children with SCD are kept informed to assure the best medical care for their children.

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30 Cognitive/Academic Interventions As the cognitive and neurological effects of SCD vary by individual, it is important that interventions meet each childs individual needs through academic support in schools. School personnel can help to decrease the risk or occurrence of strokes or other complications that may result from the disease. Bonner et al. (1999) provided four recommendations for school personnel to prevent cognitive and neurological impairment in children with SCD by managing the disease appropriately. First, school personnel must be educated on the medical symptoms and complications of SCD. They must be aware of the warning signs of a medical complication like a pain crisis, such as fever and discomfort/swelling in the abdomen or extremities. In addition, teachers must be aware of the childs need to manage his/her disease by remaining hydrated and avoiding extreme temperatures and excessive activity. Second, children with SCD should be periodically monitored with neuropsychological screenings or evaluations. If results decline dramatically, this can provide evidence that an undetected silent stroke has occurred. Children should also be evaluated by a psychologist if they are frequently absent from school or are failing their classes. Third, children with SCD should be evaluated in preschool to determine neurodevelopmental functioning and school readiness before they enter school. If the child exhibits delays, they should be provided with appropriate support services. Finally, Bonner et al. recommended that teachers should be aware of the psychosocial risk factors and potential problems with peer acceptance caused by frequent absenteeism. If teachers are sensitive to these factors, they can help boost the childs selfesteem and promote a positive academic experience. Therefore, it is important that caregivers of children with SCD not only inform the school that their child has sickle cell

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31 disease but also inform the school personnel on the specific medical, cognitive, and psychosocial needs of their child. Psychosocial Interventions Psychosocial interventions both inside and outside of school can help prevent many of the negative psychosocial effects of the disease. The following section will discuss one type of psychosocial intervention, the support group/education program, which can be an effective way to bridge medical, cognitive, and psychosocial interventions. Support groups and education programs are linked together because it is rare to find a support group that does not include an education component and vice versa (Butler & Beltran, 1993; Collins, et al., 1998). Support groups/education programs should focus on disease etiology, transmission, and techniques to manage pain and other medical complications (Collins et al.). They can also provide an opportunity for people affected with SCD to discuss concerns about death, feelings of helplessness and hopelessness, depression and low self-esteem, interpersonal difficulties, academic problems, and parental guilt regarding disease transmission, as recommended by Collins et al. (p. 443). The following section will describe some known aspects of support groups and review some program evaluations. Nash and Kramer (1994) identified 134 self-help groups in 31 states, the District of Columbia, and one province in Canada by in a National Survey of self-help groups for individuals affected by SCD. Of those groups, 123 group leaders volunteered information about the groups demographics. Nash and Kramer defined group membership by regular participation in meetings, but did not define participation. Of the groups, 65 (52.8%) were designed for families of children affected by SCD, 23 (18.7%) were designed for

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32 parents of children with SCD, 20 (16.3 %) were designed for adults with SCD, and 15 (12.2%) were designed for adolescents with SCD. The mean age of group members was 36.6 years indicating a higher percentage of adults than adolescents and children. The majority of the group members were African-American, but there was one person identified as Hispanic and one person identified as mixed race. The groups differed in many ways but shared some similar characteristics. The majority of these groups met monthly (59.4%), but 12.3 % met twice a month, 5.8 % met twice a week, and 1.6% met weekly. Over half of the groups advocated for change, provided speakers for other groups, had a phone help system, provided transportation for other group members, and provided a buddy system. In addition, over 80% of the groups reported that the members gave advice to one another, talked about things that caused stress on the family, talked about very personal feelings, listened to experts talk about SCD, learned how to deal with emotional issues, and talked about how to recruit members. Another important finding indicated that length of participation in the group was negatively correlated with psychosocial interference and psychological symptoms. This indicated that the length of membership may help to decrease distress in the individual. Based on the results of this study, it appeared that support groups differed in their members, structure, and focus. It is therefore important to know which components are effective. If the program is not effective, money and resources will have been wasted, and the participants may have not benefited from the services. The following section will describe three program evaluations of support groups.

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33 The first support group evaluation was conducted by Butler and Beltran (1993) with a community-based adult SCD group that was presented in five bi-weekly sessions. The sessions consisted of three components: education, task-oriented activities, and a support group. The sessions included education about disease transmission, manifestations, treatments, and psychosocial aspects. However, the article did not provide a description of the way information was transmitted. While the only data collected were descriptive, the researchers found that the physician-patient relationship was improved, patients were able to express many unspoken fears, and individual members were able to seek help" (p. 55). The improved physician-patient relationship was noted by the physicians by the "absence of demands or requests from patients or residents to transfer care to another physician" (p.55). This was the only documented method of assessment. It appears that the other improvements were anecdotal, and there was no mention of the data collection procedures. While the authors description of this program provided anecdotal evidence of success, it is necessary to use rigorous methodology to determine the effectiveness of programs. The naturalistic setting of many support groups makes this task difficult, but there is a great need for more studies of this nature. In response to studies that evaluate SCD programs that are "methodologically unsophisticated, often failing to include a comparison group, preand post-intervention assessments, and provide follow-up data" (p. 384), Kaslow et al. (2000) implemented a study on the effectiveness of a psychosocial intervention for children with SCD and their families. The study was designed as an intervention for the whole family. The study used random assignment and pre-, post-, and follow-up assessments. There were 59 participants, ages 7-16 years, who were receiving medical treatment at a comprehensive

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34 SCD center and were referred to the study because they were experiencing adjustment difficulties with SCD. They also met the criteria of scoring less than 50% on a knowledge of SCD quiz, having a t-score above 66 on the Children's Depression Inventory (Kovacs, 1992), and having a t-score above 70 on the Child Behavior Checklist (Achenbach & Edelbrook, 1983). Of the original 59 participants, 39 (66%) completed the entire intervention including the postand follow-up assessment part of the study. The intervention included a weekly meeting with an African-American therapist for one hour. The family was paid $10.00 for each session. The therapist followed a manual for six sessions. Each session included goals, a review of the week and home activities, activities such as role plays and games, and homework assignments. The sessions addressed issues including facts about SCD, preventative strategies to decrease medical complications, pain management techniques, active listening skills, coping strategies, and a review. Treatment integrity was tracked by the completion of a treatment rating list by a separate rater who did not conduct the session. According to the ratings, every family received the components of the treatment during each session. The control group continued to receive quality standard care by a multidisciplinary pediatric hematology team but did not have contact with the project personnel until after the six weeks was over. For ethical reasons, this group received the treatment for a six week period following the other group. Immediately following the six sessions, the family was given the same assessment that they were given before the intervention began, and they were given the same assessment six months later to provide follow-up data. A number of measures were used for the pre-, post-, and follow-up assessments of the children. A 10-item SCD quiz was designed for this study to measure basic facts

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35 about the disease. The Children's Depression Inventory (CDI) (Kovacs, 1992) was used to assess depressive symptoms in the children. The FACES-II (Olson McCubbin, Barnes, Larsen, Muxen, & Wilson, 1992) was used to assess the cohesion and adaptability of the families. To evaluate the helpfulness of the intervention, a 12-item instrument was given to the families to assess satisfaction of the intervention and to provide suggestions for future interventions. Families were also asked to provide demographic information and completed the Structured Interview for Diagnostic Assessment of Children (SIDAC), a measure adapted from the K-SADS (Puig-Anich & Chambers,1978), a SCD knowledge test, the FACES II, the Child Behavior Checklist (CBCL) (Achenbach & Edelbrook, 1983; Achenbach & Edelbrook, 1991 ), the Dunst Family Support Scale (FSS) (Dunst, 1984 ), the Dunst Family Resource Scale (FRS) (Dunst & Leet, 1988 ), and a questionnaire to evaluate the intervention. Despite the numerous measures, the only significant difference between the two groups was in the knowledge of SCD. Children and caregivers in the intervention condition had a larger improvement in scores on the quiz at both the postand follow-up assessment than the children and caregivers in the control condition. There also was a reduction in maladjustment symptoms over time as measured by the CDI and CBCLExternalizing and Internalizing scales. However, since both groups experienced a reduction in scores, this cannot be considered to be a result of the intervention. In addition, the caregivers in the experimental group reported more internalizing symptoms on the CBCL-Internalizing at the follow-up assessment despite the decrease during the intervention.

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36 The decrease in scores and the lack of significant differences between the groups could have occurred because of many factors, such as the small sample size, the limited number of family members that participated in the study, the lack of clinically significant scores at the onset of the intervention, the use of measures that were not sensitive to small changes, the choice of outcome variables, or the brevity of the intervention (Kaslow et al., 1998). These limitations provide suggestions for future studies, such as using a larger sample size if possible and using measures that are more sensitive and relevant to the participants. Standardized measures often do not consider the problems experienced by children and families affected by SCD. Anecdotal data obtained from this study indicated that the study had a positive impact on families, including increased willingness to seek information about SCD, improved communication among family members, and increased adherence to medical treatments. This anecdotal data provided qualitative information about the effectiveness of the intervention that would have otherwise been missed in the study. This stresses the importance of including qualitative data in studies that evaluate interventions. Finally, the last possible explanation mentioned by the authors for the limited results was the expansive information covered in a short period. They recommended either lengthening the intervention or focusing on less topics. Telfair (1994) recommends that interventions and comprehensive care should take a longitudinal approach, and may be most effective if they last several years. Studies also have looked at the effects of support groups on adolescents. Support groups can be particularly helpful with adolescents because they are at a developmental stage where groups are important to their social system (Collins et al., 1998). A study by Telfair and Gardner (1999) evaluated 12 adolescent support groups for SCD using a 39

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37 item questionnaire regarding attendance, satisfaction with group, reasons for attending, reasons for not attending, and amount of help received from the group in various areas. The study provides important information about the characteristics of the active members of these groups as well as information about the most and least helpful aspects of the groups. The information obtained included gender, age, family members, and transportation to meetings. About sixty percent of the group members were female and 78% percent were in 7 th grade or higher. All participants of the groups were the only member in their household with SCD. An active member was defined as having attended at least one group meeting in the past year, voluntarily being included on the roster and having been diagnosed with SCD or hemoglobinopathy. However, most attended more than the criteria. Sixty-seven point one percent of active members reported attending the group every or almost every time. About half of the sample (48.7%) drove or got a ride and the other half (40.8%) used public transportation (Telfair & Gardner, 1999). Patients were most satisfied with the group when it provided opportunities to learn how to solve problems. The respondents liked the groups best when the groups dealt with "real life issues," such as explaining condition to others, transition to adult care, and negotiating the health care system. There was evidence that the support groups were helpful to the participants; however, frequency of attendance was not predictive of physical well-being or group satisfaction. This could imply that it may be helpful just to be a member or to attend some events. In addition, the most common reason stated by 33.3% of respondents for not attending was other circumstances or lack of transportation

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38 (Telfair & Gardner, 1999). Therefore, not attending seemed to be related to reasons other than group satisfaction. While this study provided information about the characteristics of support groups, other studies are needed to evaluate the shortand long-term effects of individual groups. One way to evaluate a support group would be to compare the participants to a matched sample of non-participants. Without this control group, it is not possible to determine if the effects are due to the support group or other factors. "The absence of a comparison group of adolescents who do not attend support groups renders it impossible to rule out potential confounds that might further explain findings" (Telfair & Gardner, 1999, p. 388). It also is important to understand what components of support groups are effective and what components need to be improved. Interventions that are effective can help to prevent many of the negative manifestations of SCD. Despite of this, many people are not accessing these beneficial services. In the study by Nash and Kramer (1994), the average group size was 11 members, and there were an average of 134 self-help groups identified. Therefore, there are currently less than 1,500 identified members in support groups in the United States and Canada. While this number is most likely an underestimation of the participant numbers, it is unlikely that the 72,000 Americans known to have SCD (NIH, 1996) are utilizing these services. This indicates that there is a need to understand the reasons that prevent people from participating in support groups. One way to accomplish this would be to understand the characteristics of both the participants and the nonparticipants to determine the needs the different types of people affected by the disease.

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39 To understand the needs of individuals with SCD in a study, the research methods must be rigorous and include control groups, child and caregiver informants, mixed methods, and sensitive measures. This study used these components to evaluate a support group for children with SCD. First, the study compared results from treatment and control groups of children and families who do and do not participate in a support group. Second, the study obtained information from both the children that have SCD and their caregivers to provide a more comprehensive picture of the daily experience of living with SCD. Third, the measures used in the proposed study were both quantitative and qualitative, providing a more comprehensive evaluation of the population. Finally, the study used both quantitative and qualitative methods that were relevant to the outcome goals and are sensitive to small differences by using the programs goals in the instrument development. The following research study examined the characteristics of active and nonactive members in a support group for children with SCD and their families called the Hop To It (HTI) program. The study provided information on the effectiveness of this support group, the characteristics of individuals with SCD, and the differences between active and non-active members. The methods that were used in this study are discussed in Chapter III.

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40 Chapter III Methods This chapter outlines the procedures and instruments that were used to determine the following: 1) whether there is a difference in the knowledge of Sickle Cell Disease (SCD) between families of a child affected by SCD who were active in a support group for the disease, the Hop To It (HTI) program and families of a child affected by SCD who were not active in the support group, 2) whether there is a difference in the beliefs about how SCD affected ones life between active and non-active members of the HTI program, and 3) whether there is a difference in the behavioral and emotional functioning between active and non-active members of the HTI program. First, a description of the HTI program will be included, followed by a discussion of the setting and research participants. Then, the independent and dependent variables, the research design, and the data collection procedures will be presented. Hop To It Program The Hop To It program (HTI) is a support group for families of children affected by SCD who reside in the Tampa Bay area. Sponsored by the Children's Cancer Center, the HTI program provides free academic and social support to these families and is funded by donations from the community. As of 2003, the HTI program has served over 60 families from Hillsborough, Pinellas, and Polk counties in Florida who have an elementary-school aged child (K-6th Grade) diagnosed with SCD. The HTI program was initiated in 1993 in response to the untimely death of a pediatric patient who had SCD. The goal of this program is to prevent severe medical complications and premature death of patients by educating other patients and the

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41 community about the implications of the disease. This is accomplished by providing the patients and families with education and access to community and medical resources. It is hypothesized that these services will empower the patient to become a more active member of the health care team and to take better care of him or herself. The program offers four components: tutoring, monthly events, lunch and learn programs, and school presentations. Each of the four components will be discussed further. The tutoring program takes place every Tuesday evening of the school year from 6:00 to 8:00 p.m Before tutoring begins, dinner is served to provide a healthy meal and opportunity for socialization. During the tutoring sessions, volunteers from the community are paired with individual children to help the child with his/her homework. After the tutee has completed his or her assignments, the group reconvenes for a social activity, such as a movie or an art project. Monthly events are held for members of the Kanga Krewe, and families attended two events per year. Examples of events include a summer day camp, an annual back to school kick off party, a Tampa Bay Buccaneer game, a Tampa Bay Lightning Hockey Game, and a family fun day. The events give the children an opportunity to socialize and interact informally with the other children and staff in the program. The lunch and learn program is held a few times a year for the caregivers of children with SCD. The caregivers are provided with a lunch while a speaker presents on topics relevant to families affected by SCD, such as obtaining Medicaid or treating a pain crises. Caregivers also have the opportunity to meet and socialize with other caregivers of children with SCD.

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42 The school presentations are intended to inform school personnel about the symptoms and care for SCD. If a school presentation is requested by a caregiver, the program director of the HTI program meets with the childs teacher, school nurse, and other related personnel. At this appointment, the director presents information about SCD and discusses preventative measures that the school must take to avoid serious illness, such as frequent hydration and avoidance of extreme temperatures. These presentations are intended to promote the health of the child by educating the school personnel and by building communication between the medical and educational community. Setting This study was a component of the Supporting Caretakers of Children with SCD: Improved Outcomes for Children grant sponsored by the University of South Florida Collaborative Grant for Children, Families, and Communities. The goals of this grant were to identify barriers that prevent families from accessing the HTI program and to compare the psychosocial functioning of children who do and do not participate in the HTI program. The following descriptions of the participants, independent and dependent variables, research design, data collection procedures, and analysis will serve as a description for both the Supporting Caretakers grant and this proposed study. Participants The participants in this study were families of and children (kindergarten through 6 th grade) who had SCD who resided in the Tampa Bay area. For a causal-comparative study of this nature, where the variables have not been manipulated and the independent variables are categorical, Gall, Borg, and Gall (1996) recommend a sample size of at least 15 participants per group. The intended number of participants was 60 families, 30

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43 families who were active members in the HTI program and 30 families who were not active members in the program. A total of 45 families participated in at least one stage. Of the total 45 families, 32 were considered active members, and 13 were considered non-active members. An active and non-active member will be defined later in this section. It was not possible to get a sample of 15 participants in the non-active group. A discussion of possible causes for the small number of non-active members is included in Chapter Five. There were two stages of this study. The caregiver was the informant for the first stage (Degree Sickle Cell Disease Affects Life Survey-Caregiver and Behavioral and Emotional Rating Scale), and the child was the informant for the second stage (Degree Sickle Cell Disease Affects Life Survey-Child, Knowledge of SCD Survey, focus group). It was intended for a caregiver and a child from each family to participate in both stages; however, the children of many of the caregivers who participated in the first stage did not participate in the second stage. See Table 1 for the number of participants in each stage and group. Of all the participants, the majority was African-American. There were more males than females, and the grades ranged from kindergarten to sixth grade. See Table 2

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44 Table 1 Number of Participants in Each Category Stage Active Non-Active Total Caregiver Stage 28 12 40 Child Stage 18 2 20 Both Stages 14 1 15 Total 32 13 45 Group Membership Table 2 Demographic Information for the Children Active 21 11 Non-Active K 1 2 3 4 5 6 Active 2 5 5 0 8 4 8 Non-Active 3 0 3 3 2 1 1 Race African-American Hispanic-American Active 28 4 Non-Active 13 0 Gender Grade Females Males 6 7 Males Females

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45 for a description of the gender, grade, and race of the children. The caregivers had the same numbers in each race category. Their ages were not collected, and there female caregivers and male caregivers. Independent Variables The proposed study examined the independent variables of informant for the instrument and member status in the HTI program. The informant variable had two levels, the child and the caregiver. The member status variable had two levels, active and non-active members. Group membership, active and non-active was determined as follows. An active member was defined as "having attended at least one group meeting during the past year, requiring voluntary inclusion on group roster and having been formally diagnosed with SCD" (Telfair & Gardner, 1999, p. 44). Active status was determined reviewing a log of the attendance maintained by the HTI program. If the child had never been to an event or meeting or if the event attended was over one year from the time they were first asked, the family were considered non-active. On the contrary, if the family or child had been attending events in the past year, the family was considered active. The status was determined from the time of the first point of participation of the child or caregiver, which was either the first stage or the second stage. Telfair and Gardner's (1999) criterion was chosen instead of using the percentage of events attended. There were several reasons for this choice. First, Telfair and Gardners criterion has been used in past research to define an active member, and past research has suggested that frequency of attendance was not predictive of physical wellbeing or group satisfaction (Telfair & Gardner, 1999). Second, some children may not have participated in tutoring because they did not have any academic problems, and the

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46 parents did not think that it was necessary; however, they attended most of the other events. Third, each participant had been attending the HTI program for different amounts of time because the children were different ages and families became aware of the program at different times. Tthis definition of active membership best represented a group of people affected by SCD who chose to participate in a support group and a group of people who chose not to participate in a support group. Dependent Variables The dependent variables in the study were the Survey of Childrens Knowledge of SCD (developed for this study), the Degree Sickle Cell Disease Affects Life (DSCDAL) (adapted from Telfair & Gardner, 1999), and the Behavioral and Emotional Rating Scale (Epstein & Sharma, 1998). In addition, a content analysis from a focus groups was conducted to answer the research questions. Each will be discussed further. Survey of Childrens Knowledge of SCD (survey) Overview of the Knowledge of SCD survey. A thirty-item survey was administered to the children participants to see if there was a difference between the two groups (active and non-active) in the knowledge of SCD. The survey was derived from the goals of the HTI program that were stated in the mission statement. The program focuses on teaching the pediatric patients about their disease including symptoms of illness, pain crisis management and various treatment methods. It is felt that if a patient understands more about their illness (in age-appropriate terms) the patient could become an active member of the team and better equipped to take care of themselves. (S. Coleman, personal communication, May, 2002)

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47 Development of the Knowledge of SCD Survey. The survey included the following three aspects mentioned in the mission statement: symptoms of SCD, pain crisis management, and treatment methods. Before the survey was administered to the children, it was reviewed by an expert panel to ensure content validity. The expert panel was comprised of two groups: medical professionals and people affiliated with the HTI program. The medical professional panel consisted of one doctor and nurse who worked with patients with SCD in the Tampa Bay area and one developmental pediatrician. The expert panel of individuals affiliated with the HTI program consisted of the program director of HTI and two other volunteers who attended the events. Both groups in the expert panel were asked to rank the most important and relevant items for inclusion in the final survey. The preliminary version that was submitted to the expert panel (See Appendix A) provided directions that included the purpose of the study and survey. Each of the three categories had 24 items; 12 that were true and 12 that were not true. The expert panel of medical professionals were asked to rate each item on a scale of 1-4 based on how important it would be for a child with SCD to know about this item. The expert panel of individuals affiliated with the HTI program was asked to rate each item on a scale from 1-4 based on the degree that the children have been exposed to the item in the HTI program. This is important because the intention of the survey is to assess whether the children have learned about these items in the HTI program. If the item had never been mentioned in the program, it would not be considered an appropriate item.

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48 The surveys were distributed to the expert panel and collected. Interviews to review the results were conducted with the expert panel of medical professionals. The ratings of both expert panels were combined, and the scores for each item were averaged together. For the final survey, the items with the highest scores in each of the 6 sections were selected. It was intended to only select items for the final survey that had received a rating of three or higher by each member; however, additional items were needed for the non-true sections because there were not five items that had received a rating of three or above. The selection of items for each section will be described further. For the true items in the symptoms section, the researcher selected the fourth highest rated items and the sixth highest rated item. The fifth highest rated item, stroke, was not selected because the medical professionals felt that while this item was important, the children would not be familiar with the term stroke. Neither panels understood the directions for the non-true items, and they gave all the items low ratings instead of a high ratings. They rated these items as if they were not important or not covered, instead of whether they were important for the children to know that they were not true. Therefore, the ratings for the non-true items were not helpful. The only item that was selected from this section was cant stop coughing as recommended by the medical professionals. In addition, the four items of runny nose, restless, cant pay attention in school, and trouble getting up in the morning were recommended by the medical professionals and were included in this section. For the true items in the pain crisis management techniques section, the items with the top four ratings were used. The additional item of telling an adult was suggested by the medical professionals and used for this section. For the non-true items,

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49 the items that were rated in the top five by the medical experts were used. The ratings of the HTI personnel were discounted because they all circled one to indicate that the item had not been covered. They had misunderstood the directions. For the true items on the treatment section, the two highest rated items items were used. The medical experts believed that the children would not understand terminology used in the rest of the treatments, and suggested using the items of taking tests on your brain, getting heart tests, and getting frequent blood tests to check blood. These items were therefore used in this section. For the non-true items, the items that received the two highest ratings were used. The medical professionals did not believe that the children would understand the next highest rated items of eating a wheat free diet and chewing medicated gum, even though they rated them with a high rating. They suggested the use of the items with the next highest rating of taking insulin, avoiding sports or exercise, and eating extra salt because these are myths that they hear in their office. Therefore, for many items, the suggestions of the expert panek were used over the ratings as the suggestions were deemed to be more meaningful and understandable to the children. See Appendix B for the ratings of the expert panel. Administration of the Knowledge of SCD Survey. The final version of the survey contained 10 statements, five of which were true and five of which were not true. For the administration of the survey, it was read aloud to each child because each child was at a different reading level. After a statement was read, the child was told to chose no, sometimes, or yes to indicate whether the item belonged to the particular category (symptom, management, or treatment). The middle choice of sometimes was included because some of the answers only occurred sometimes. In this case, the correct answer

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50 was sometimes or yes. Each correct answer was worth one point, and each incorrect answer was worth zero points. There was a total of 30 possible points on the survey. The scores for each child were calculated. See Appendix C for the complete survey and answer key. Degree SCD Affects Life (DSCDAL) This measure was adapted from an interview developed by Telfair (1999) to evaluate support groups for adolescents. The adapted interview was administered to both the caregiver and the child. The version used for the study included almost all the items as the original version, but a few items were removed because they were not appropriate for caregivers or children. The DSCDAL included six questions about how SCD affects the life of the family and thirteen questions about how SCD affected the life of the child. The rater was asked to decide how frequently each item affected his/her life or the life of the child followed by a Likert scale of never, sometimes, and often. The items regarding the family include money or finances, taking off from work, social and religious activities, trips and vacations, and everyday tasks. The items regarding the children included homework, attendance in school, grades, social activities, religious activities, after-school activities, physical activities, sports, everyday tasks, self-care, getting along with parents/ guardians, getting along with brothers/sisters, and getting along with friends. The DSCDAL was conducted in different formats for caregivers and children but included almost all the same items. The item of going to religious events was included in both components on the caregiver version and on the family component on the child version. The rest of the items were identical.

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51 In the administration for the caregiver, the question was phrased, Please rate how often the following areas are affected by having a child with SCD for the first six items and, Please rate how often your child with SCD has problems in the following areas for the 13 items about the child (See Appendix D ). For the administration of the DSCDAL for the children, pictures were included with each item (See Appendix E). For the first section that asked about areas related to the family, a scenario was read to the child about a girl or boy (depending on the sex of the child) who had SCD. The child was asked to think about the ways that SCD could affect this childs life. This indirect method was intended to remove the blame from the children that they may have felt if they believed that they caused problems for their family, but it still elicited information about their own family as the children were inclined to use their own experience to answer the questions. After the scenario was read, the children were told to look at the picture that corresponded with each item and think about how much this area could be affected by the disease. They were shown three squares with the words not at all, a little bit, and a lot. In the square for not at all, there was nothing other than the words not at all. In the square for a little bit, there was a small blue circle. In the square for a lot, there was a large blue circle. These circles were included to give the child a visual representation of the Likert scale. Following these directions, the administrator read the six words beside the picture and asked the child to choose one of the squares of the Likert scale. For the 13 items that pertained to the way SCD affects the childs life, there also was a picture that corresponded with each statement. However, for these items, the child was asked to think about how SCD affected their own life or caused problems for them in

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52 each area. This section was less likely to cause negative feelings because it asked how SCD affects the child directly and not how the child affected the family. To score each section for both the caregiver and the child version, the graduate student who administered the interview calculated the composite score of both the family and child section. Answers indicating "never" or not at all received a zero. Answers indicating "sometimes" or a little bit received a one, and answers indicating "very often" or a lot received a two. There were 40 possible points. Higher scores indicated that SCD affected that persons life to a higher degree. A composite score was obtained for each informant, which was used to calculate the mean, standard deviation, and median for each group. Behavioral and Emotional Rating Scale The Behavioral and Emotional Rating Scale (BERS) (Epstein & Sharma, 1998) is a 52-item strength-based behavioral checklist designed for caregivers or teachers of children ages 5 to 18 years. This instrument was chosen to emphasize behavioral and emotional strengths rather than a childs deficits, problems, or pathology. By using a strength-based approach, the assessment process remained focused on what a child could do instead of what he/she could not do and is a more positive experience for the informant. Epstein defined strength based assessment as a measurement of those emotional and behavioral skills, competencies, and characteristics that create a sense of personal accomplishment; contribute to satisfying relationships with family members, peers, and adults; enhance ones ability to deal with adversity and stress; and promote ones personal, social, and academic development (Epstein & Sharma, p. 3). Therefore, this instrument provided a

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53 comparison of the strengths of the two different groups, the active and the non-active group. The BERS can be completed by a parent, teacher, or anyone knowledgeable about the child. In this study, the caregiver of the child was asked to complete the BERS. The caregiver rated the extent to which each item/statement described the child using a fourpoint Likert scale ranging from not at all like the child to very much like the child. Based on the responses, an overall strength quotient and five subscale scores was obtained. The five subscales areas were Interpersonal Strength, Intrapersonal Strength, School functioning, Family Involvement, and Affective Strength. For this study, the composite strength quotient and subscale scores were used to compare differences between the strengths of each group. To obtain the strength quotient and subscales, the administrator followed the standardized directions. The scores were standardized and were similar to other behavior rating scales. The domain (subscale) scores had mean of 10 and a standard deviation of 3, while the overall strength quotient had a mean of 100 and a standard deviation of 15. The manual provided norms tables for a population with an emotional and behavior disorder (EBD) and without one (nonEBD). For this study, it was assumed that the population was more similar to the nonEBD population, and those norms were used for comparison. The reliability, how consistently the scores on the B.E.R.S. reflected the childs actual behavioral and emotional strengths, and the validity, how accurately the scores on the B.E.R.S. reflected the actual constructs it claimed to measure (behavior and emotional strengths), were analyzed. The reliability was measured four ways; content (internal consistency), time sampling (test-retest reliability), inter-rater reliability, and scorer

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54 reliability. The average content reliability, measured by Cronbach's alpha, was above 0.80 on all subtests and above 0.95 for the Strength Quotient for each age from five to eighteen. Ages five and six were grouped together and sixteen through eighteen were grouped together. This indicated that the items in each subtest and the items overall are related to one another. The test-retest reliability also was high in all areas and showed that a child would obtain a similar score on the measure over time. To measure this, the BERS was administered twice to 59 students, age 14-19, at the beginning and end of a two week period. The correlation coefficient was 0.99 on the Strength Quotient and greater than 0.86 on all the subtests, demonstrating the consistency of the results. The inter-rater reliability also was high and showed that there was agreement between two administrators and the administration was standardized and consistent. Nine pairs of special education teachers rated 96 children on the BERS. There was a 0.98 correlation for the strength quotient and above 0.83 correlations on each subtest. Finally, the scorer reliability was 0.99 for the strength quotient and showed that the instrument was easy to score, and similar scores were obtained by two different scorers. The validity, or how accurately the instrument measured the intended construct, was measured in four ways: content, criterion-related, construct, and item validity. Content validity refers to the ability of test items to measure the respective behavior domain. Content validity was measured using a factor analysis which resulted in five domains. On the factor analysis, the loading score for each item ranged from 0.53 to 0.83 with the majority of scores falling between 0.70 and 0.90. This indicated that most items correlated highly with other items in their domain. To measure criterion-related validity, the BERS subscale scores were correlated with the scores of the Walker-McConnell

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55 Scale of Social Competence and School Adjustment-Adolescent Version, the Self Perception Profile for Children and the Teacher Report Form. While the scales did not measure identical domains, many of the domains were similar and had a high correlation. For example, the highest correlation of 0.85 was between the school functioning domain of the B.E.R.S. and the school adjustment domain of the Walker-McConnell scale. The lowest correlation of 0.37 was between the family involvement domain of the B.E.R.S. and peer relations domain of the Walker-McConnell; however, these two scales were not measuring the same construct. The BERS did have construct validity. Construct validity is the degree that each subscale score and overall score reflect the actual construct that is to be measured (behavioral and emotional strength). To measure this, the scores of children with and without Emotional and Behavioral Disorders were compared, and there was a significant difference between the scores for the EBD group and the scores for the NEBD group. Therefore, the instrument is deemed valid for the purposes of this study. Research Design The proposed study was considered a causal-comparative design that used a mixed-methods approach (Gall, Borg, & Gall, 1996). It was causal-comparative because the variables had not been manipulated and the independent variables were categorical. It was a mixed-method study because both quantitative and qualitative information were gathered. The quantitative information was described in the section above. The qualitative information were obtained through focus groups with the children. The structure and procedure of the focus groups will be discussed in the data collection section.

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56 Procedures Recruitment of Participants As part of the grant, the recruitment process was initiated in August 2002 and continued until the maximum number of participants in each group were recruited. Recruitment involved flyers, announcements, and referrals from community liaisons affiliated with the SCD community. The flyer contained information about the study, contact information, and a sentence that indicated that participants would be paid. The flyer was bright and colorful to attract attention. See Appendix F. The flyers were distributed after announcements were made at HTI events. At an open house for the HTI program, four School Psychology graduate students from the University of South Florida made an announcement to introduce the grant and to give contact information to potential participants. At the opening of the HTI store, an incentive program for grades and participation, the same students met with groups of caregivers to share information about the grant. Those who were interested signed consent forms and made appointments to participate. The students also recruited caregivers at subsequent tutoring sessions when they dropped off their children. Other families on a list of actual or potential participants of the HTI program were contacted directly by the program director to ask if they would like to participate. This method was chosen because it is recommended that a person familiar with the future participants should make the initial contact (Rosenthal & Rosnow, 1975). Following this contact, the students called the interested candidates to set up an appointment. The community liaisons were contacted in the recruitment process, including the director of the HTI program, a leader of the Sickle Cell Association in Tampa, and a

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57 nurse affiliated with the African American community. The director of the HTI program provided the dates for the events mentioned and made the initial contacts. The director of the Sickle Cell Association and the nurse affiliated with the African American community provided names of potential participants to one of the investigators in the grant. The graduate students involved with the grant sent both these liaisons an abstract that described the purpose, plan, and benefits of the study as well as flyers to distribute. The snowballing technique was used to recruit more participants by asking each participant if they knew any other families who had SCD that had children in elementary school during the initial interview (Gall, Borg, & Gall, 1996). If the participant knew someone, he/she was given a flyer and instructed to tell the other family to call the graduate students if interested. Obtaining Consent Two of the School Psychology graduate students arranged interviews with the caregivers. At the initiation of the interview, the interviewee reviewed the adult and parent consent form with the participant. The students informed the caregiver that participation was voluntary. If the caregiver chose to participate, he/she was asked to sign both the adult consent form and the assent form for the child. The child also was asked to sign the form. Data Collection There were two stages of the data collection, an interview with the caregiver and focus groups and interviews with the children. The interviews and focus groups were conducted between November, 2002 and May, 2003 by graduate students who were trained in the administration of the interview. The graduate student made an appointment

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58 with the caregiver to complete the interview and behavior-rating scale. The appointments were held at a location and time of the caregiver's convenience, often at the participant's home or at the Children's Cancer Center where the HTI program is located. The appointments lasted about 90 minutes. At the onset of the interview, the participant was asked to sign an informed consent form approved by the Internal Review Board at the University of South Florida if he/she had not done that already. After signing the consent form, the interview was conducted. The responses to the interview questions were recorded and summarized in writing by the interviewer during the session. The DSCDAL measure was included in the interview. Following the interview, the caregiver was asked to complete the BERS (Epstein & Sharma, 1998). The children were later invited to participate in a focus group and interview. During the interview, a School Psychology graduate student administered the DSCDAL and the knowledge of SCD survey to each child individually. Following the interview, the focus groups were conducted. The purpose of the focus group was to compare the childrens understanding of SCD and perception of how SCD affects aspects of life of their life between the two groups, active and non-active members. For the group of active members, the focus group also was used to determine the children's perception of the HTI program and how helpful they felt that certain aspects of the group were to them. For the non-active group, the focus group was used to find out their sources of support. Richard Kroueger (1988, p.18) described a focus group as a . carefully planned discussion designed to obtain perceptions on a defined area of interest in a permissive, nonthreatening environment. It is conducted with approximately seven to ten

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59 people by a skilled interviewer. The discussion is relaxed, comfortable, and often enjoyable for participants as they share their ideas and perceptions. Group members influence each other by responding to ideas and comments in the discussion. The focus group was included in this study to obtain rich information to supplement the quantitative information from the other instruments. It was chosen in order to promote a discussion among the children and stimulate their feelings and beliefs about having SCD. These perceptions may not have been uncovered in individual interviews. In addition, the focus group was intended "to understand people's opinion of a program, event, or service, to explore the rationale behind people's thoughts. . (Heary & Hennessy, 2002, p. 47), such as sharing opinions about the HTI program. To obtain maximum participation, focus groups must be tailored to the developmental needs of the participants as well as must be able to engage the child's interest (Heary & Hennessy, 2002) and facilitators must be aware of children's understanding of their health and illness in order to develop appropriate questions (Bearison, 1998). Therefore, the focus groups questions were examined by an expert panel to determine if they were developmentally appropriate. The expert panel consisted of four professors from the University of South Florida (School Psychology, Social Work, Child and Family Studies, Pediatrics) and the program director of the HTI program. Using their expertise of child development, pediatric psychology, and qualitative research, the members of the panel determined the appropriateness and relevance of each question. Changes were made after suggestions were given. The questions are included in Appendix G.

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60 The six focus groups with 20 children who had Sickle Cell Disease were conducted during May 2003 to learn of their knowledge of SCD and their beliefs about its impact on their lives. The number of participants in the focus groups ranged from two to six children. Of the six focus groups, five groups were composed of active members and one group was composed of 2 non-active members and one active member. However, the active member in this group had only attended one event in 2001-2002 and one session of camp in 2001. Therefore, she was not very familiar with the HTI program. This group was defined as representing children who were non-active members. The focus group sessions lasted from 45-minutes to 1 hour. The sessions with the children were audio-taped and transcribed. In addition to the six focus groups with the children, separate focus groups were simultaneously held with the caregivers of the children but were not audio-taped. Instead, the sessions were transcribed and summarized during the session using flip charts. Direct quotes were not obtained from the caregivers. This information was used in Chapter Five to supplement the discussion of the results in this chapter. All the transcriptions were segmented by each thought unit mentioned. The researcher grouped the thought units by similar themes. The grouping of thought units produced several larger categories that related to each of the research questions. The themes within each larger category were presented in order of frequency with the corresponding question that elicited that response. In some cases, a child would provide a response to a question that was asked at an early point in the focus group. Therefore, while the themes were presented under each category or question, the child may not have answered the question immediately after it was asked. Therefore, the responses were

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61 grouped under the question that they seemed to be answering and not under the question that may have elicited that particular response. Summary This chapter described the methods that were used to collect data to answer the research questions. The study was conducted in two stages and included data collection of a knowledge survey, a survey that assessed the degree that SCD affected ones life, a behavioral rating scale, and focus groups. The results from these instruments and procedures are presented in chapter four.

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62 Chapter IV Results In this chapter data will be presented to answer the research questions that assessed participants knowledge of Sickle Cell Disease (SCD), the degree that SCD impacted their life, and the behavioral and emotional functioning of the children affected by SCD. The data from the active members in the Hop To It (HTI) program will be compared to the data from the non-active members. Specifically, the results from the Degree Sickle Cell Disease Affects Life-Caregiver (DSCDAL-Caregiver), the DSCDALChild, the Knowledge of SCD Survey, the Behavior and Emotional Rating Scale (BERS), and a content analysis from six focus groups will be reported. The data from these focus groups and the instruments mentioned above will be used to address each research question. Research Question 1: Is there a difference in the knowledge of the symptoms of SCD, pain crises management, and various treatment methods between the children with SCD who are active members in the HTI program and those who are not active? This research question was developed to compare the results on the knowledge of SCD survey between the active members in the Hop To It Program (HTI) and the non-active members in the HTI Program. It is not possible to quantitatively compare both groups, however, because there were only 2 nonactive members compared to 18 active members. Instead, the descriptive statistics

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63 will be presented only for the active members, and qualitative information from the knowledge of SCD survey will be presented for the non-active members. The descriptive statistics include the overall scores for knowledge of SCD survey and its subtests: symptoms of SCD, pain crisis management, and treatment methods for SCD. Knowledge of SCD Survey Descriptive Statistics for the Knowledge of Sickle Cell Disease Survey The knowledge of SCD survey consisted of 30 items. There were 10 items in each of three categories: symptoms of SCD, pain crisis management techniques (PCMT), and treatments for SCD. Each ten-item category had five items that were representative of that category (true items) and five items that were myths about that category (non-true items). For each item on the knowledge of SCD survey, the participants were asked to identify whether or not the item belonged to the category by indicating yes, no, or sometimes. Correct answers received one point for a total possible score of 30. The range, mean, standard deviation, and median for the scores of the active members are presented in Table 3. On average, the active members were able to correctly identify six to seven items in each category. This indicates that they were unfamiliar with 3-4 of the items in each category. The two non-active members scored in the same range as the active members with overall scores of 21 and 22. Further information about the percentage of participants who correctly identified each item will be included in the item analysis.

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64 Table 3 Active Member's Scores on the Knowledge of SCD Survey Symptoms PCMT a Treatments Overall Range 4-10 5-10 4-8 16-24 Mean 6.83 7.39 6.72 20.94 SD 1.89 1.20 1.07 2.13 Median 7.00 7.50 7 21 Note. n=18 a PCMT=Pain Crisis Management Techniques Item Analysis of the Knowledge of Sickle Cell Disease Survey An item analysis was conducted to determine the percentage of participants who correctly identified each item as a true or a non-true item. The data from the active members will be presented in this section and will be supplemented by the qualitative information from the non-active members. See Table 4 for the item analysis. Item analysis of pain crisis management techniques (PCMT). Between 83 % and 100% of the active members were able to correctly identify telling an adult, drinking fluids, taking pain medication, and getting rest as pain crisis management techniques. The non-active members also correctly identified these items with the exception of one non-active member missing telling an adult. It should be noted that the items of drinking extra fluids and taking pain medication were included in both the PCMT and the Treatment category.

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65 Table 4 Percentage of Active Participants Who Correctly Identified Each Item on the Survey Actual Symptoms % Not Symptoms % Pain 94 Coughing 72 Shortness of breath 89 Runny nose 67 Weakness 83 Trouble getting up in the morning 67 Yellow eyes 67 Trouble paying attention in school 56 Puffy/swollen hands or feet 50 Restless 39 Actual Techniques % Not Techniques % Telling adult 100 Dunking body in cold water 72 Extra fluids 94 Heat lamp 67 Pain medication 89 Cold medicine 33 Lots of rest 83 Ice pack 17 Avoiding very hot/cold places 44 Eating a lot of food/calories 17 Treatments % Not Treatments % Pain medication 100 Eating extra salt 94 Blood tests 100 Eating extra sugar 83 Drinking extra fluids 100 Avoiding sports or exercise 50 Heart tests 83 Taking insulin 44 Brain tests 61 Surgery to remove painful area 22 Note. N=18 active members Symptoms Pain Crisis Management Techniques Treatments for SCD

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66 However, there is a discrepancy in the active members results for these items. One active member did not correctly identify drinking extra fluids in PCMT, and two active members did not identify pain medication correctly in PCTM, but all of the active members identified these items correctly in the treatment section. In contrast, the nonactive members identified these symptoms correctly in both categories. For three of the non-true items in the PCMT category, less than 50 % of the active members correctly identified them as non-true. The items that the lowest percentage of participants correctly identified as non-true were eating extra food/calories (17%), using an ice pack (17%), and taking cold medicine (33%). Neither of the non-active members correctly identified cold medicine as non-true, but they did correctly identify the other two items as non-true. Item analysis of treatments of SCD. Between 83% and 100% of the active members were able to correctly identify four of the true treatments; however, only 61% identified brain tests as a treatment. Twenty-two to fifty percent or less of the active members were able to correctly identify avoiding sports, taking insulin, and getting surgery to remove painful area as not true. A lower percentage of active members was able to identify the non-true treatment items than they were able to identify the true items. One out of two non-active members correctly identified brain tests as true and avoiding sports and taking insulin as not true. Neither of the non-active members correctly identified removing the painful area with surgery as not true.

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67 Summary of the Knowledge of SCD Survey The active members and non-active members had similar mean overall and category scores on the survey of knowledge of SCD. An item analysis revealed that the active members scored higher on the true items than the non-true items. There were similar response patterns for the non-active members. Content Analysis of Focus Groups A content analysis of the focus groups was conducted to determine the themes that were mentioned the most frequently during the focus groups and to compare the responses of the active and non-active member groups. See Table 5 for an overview of the content analysis of topics related to knowledge of SCD and for the frequency that each theme was mentioned during the focus groups. The numbers on the table indicate the number of times this theme was mentioned during the focus groups. A blank space under the non-active member title indicates that this theme was not mentioned by the non-active members. For a more detailed analysis of the themes, see Appendix H and I. Table 5 Content Analysis of Focus Groups Themes Related to Knowledge of SCD Question: What is SCD? What happens to your body because of SCD? Active Members #* Non-Active Members #* Physiological functions 40 Physiological functions 4 Pain/hurting 13 Physical problems with body 10 Etiology 2 No problems 2 No problems 4 I have it or friend has it 5 Never heard of it 2

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68 Table 5 (continued). Question: What happens when you have a pain crisis? What is a pain crisis? Active Members # Non-Active Members # Painful feeling 11 Painful feeling 5 Side effects 5 Side effects 2 Had one 4 I dont know/cant remember 6 Question: What do you do when you have a crisis? Active Members # Non-Active Members # Take medicine 13 Rest 6 Tell someone 5 Medical attention 5 Food/drink 4 Coping strategies 2 No help 1 Nothing that I can think of 1 ` Mom helps me 2 Question: Have you gone to the hospital for a crisis? Active Members # Non-Active Members # Yes 6 Yes 8 Cant remember 4 Cant remember 0 Question: What did you go to the hospital for? Active Members # Non-Active Members # Treat SCD symptoms 12 Treat SCD symptoms 2 Wellness/Prevention 8 Non-SCD related 2 Question: What are some things you do for SCD? Active Members # Non-Active Members # Medical care 10 Avoid coughing in school 1 Preventative practices 10 Preventative medicine 6 Nothing different at school 2 Ice 1

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69 Table 5 (Continued) Question: What does your mom tell you to do for SCD? Active Members # Non-Active Members # Preventative measures 12 Preventative 2 Knowledge 3 Knowledge 3 Can do anything I want 2 Nothing 2 Table 5 (continued). Question: What are some things your doctor can do to help you? Active Members # Non-Active Members # Medical procedures 8 Dont go to doctor for SCD 1 Provide support 4 Question: What is the medicine for? Active members # Non-Active Members # Helps you 2 Not sure 1 Question: Do they teach about SCD in school? Active Members # Non-Active Members # Dont teach 1 In 8 th grade 1 Should teach kids not to pick on us 1 Question: What would you like to know more about SCD? Active Members # Non-Active Members # More about physical symptoms 5 Nothing 2 If theres a cure 2 Etiology 2 Clarify myths 2 Types of SCD 1 Note n= 5 focus groups with 17 active members and 1 focus group with 2 non-active members and one active member. *The numbers indicate the number of times each theme was mentioned.

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70 Symptoms Active members. When answering the question, What is SCD? the active members most frequently mentioned physiological symptoms, such as the shape of their blood cells. The shape of the blood cells was the most frequently mentioned description of SCD symptoms, followed by disease and then descriptions of being sick. Another physiological symptoms included temperatures, exhaustion, and pneumonia. The following quotes exemplify these themes: Its a disease that, like, changes some of the cells that are in your blood and it makes your kidneys smaller. And it makes you exhausted a lot. It makes your blood form different shapes. It can get you real sick: can kill you. The second most frequently mentioned symptom was pain. For pain, the most frequently mentioned locations of pain were the arms, legs, and headaches. Each was mentioned four times. An example of a quote about pain in the arms and legs is your legs start hurting and your arms feel like theyre about to break off. Physical problems with the body was a third theme in the category of symptoms. The most frequently mentioned physical problem was yellow eyes, which was mentioned four times. Non-active members. In contrast to the active members, the non-active members gave more vague responses to the same question What is SCD? The responses in the physiological category were general, such as a sickness problem or some kind of disease. After these vague responses, the non-active members were asked what else SCD does to their body or if they had ever heard of SCD. One respondent said no, and

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71 another respondent said I havent either, I just guessed. The third respondent said that SCD was some kind of disease. When asked again So what does sickle cell disease do to you; does it do anything to your body? the respondents said No, not that I can think of, sometimes, and I dont know. Pain crisis/Pain Crisis Management Active members. When asked what is a pain crisis? the active members most frequently described the painful feelings. They most frequently mentioned the items of head hurting, pain all over the body, and needles. Examples of quotes were like somebody is hammering, like needles in the heart, and It hurts. Its really uncomfortable. No matter what you do, it doesnt help. The participants also described several side effects, such as getting seizures and getting sweaty. When asked what they did for a pain crisis, the active members provided several of the responses that were on the survey, such as taking medicine, resting, and telling someone. They also mentioned getting medical attention. Only two active members mentioned coping strategies. The non-true items from the knowledge of eating food/calories, and using ice, were only mentioned one time each by the active members to answer the questions. The following statements are examples of quotes: Like if you [sic] at school, your head hurts very bad. You can tell a nurse or something. or tell your teacher. You can go down to the office and get some ice and theyll call your mom. Uh drink lots of water cause itll help uh go through your veins and push the cells from getting stuck in your veins. I always pray to god to let him know that um, to let me feel better.

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72 Non--active members. When initially asked, What is a pain crisis? the nonactive members were not able to remember whether they had one. They later mentioned that they thought they had one. When asked to describe a crisis, one non-active member said I dont know, and a second non-active member said I know. I had a crisis in my leg before. I couldnt walk. If you stand up, your legs are weak. When asked how long the crisis lasted, the non-active member said, I cant remember; it was a long time ago. She said that it was the only time it happened. The third non-active member said that she had to go to the hospital for a pain in her forehead for about one week. Then she said that she had gone lots of times. One time I got sick, I get having fevers, and the next time when I was like four, I had to go and then when I was like seven, I had to go. When asked what they did for a pain crisis or SCD in general, the non-active members either mentioned mom helping them or were not able to think of anything. They did not mention any of the true or non-true items from the survey as the active members did. Treatments for SCD Active members. When asked what the active members did for SCD in general, the most frequent responses from the active members were related to medical care and preventative practices, followed by preventative medicine. Examples of medical care included going to the doctor or hospital and getting shots or intravenous treatments. The preventative practices mentioned were similar to those mentioned for treating a pain crisis. The most frequently mentioned preventative practices were avoiding extreme temperatures and drinking fluids. The preventative medications included taking folic acid, Echinacea, and taking medicine at night to prevent a pain crisis. The following are examples of quotes related to treatments:

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73 Dont stay out in the sun. Dont stay in the cold a lot. Always put on a sweater before going outside in the cold, and never go outside when its too hot. If you get too cold, youll get a really bad cold; and if you get too hot, you might overheat and have to go to the hospital. Never go to sleep without a shirt on. [If you do] you get really really sick. When asked what their doctor did to help them, the active members mentioned medical procedures and providing support. The medical procedures discussed included taking pictures of the heart or brain and giving them medicine. Examples of providing support included helps a lot and giving advice to their caregiver. Sometimes they put this thing around your arm to check your blood pressure, and sometimes they take out some of your blood to test your blood. He does like MRIs to check our brain. Its when you go in this machine and its like real loud and you just give them [inaudible] and um they take pictures of your brain or your heart. Non-active members. When the non-active members were asked what they did for SCD in general, they gave very few answers. The only answer for that question was about avoiding coughing in school. When asked about the doctor, one non-active member said that he/she did not go to the doctor for SCD. When asked about treatments that their caregivers had told them to do for SCD, the responses were related to prevention, knowledge, or nothing. Further Education on SCD When asked what more they would like to know about SCD, the non-active members said nothing, in contrast to the active members who mentioned wanting to

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74 know more about symptoms, such as why their eyes turn yellow, why their heart is bigger than others, and what happens in their kidneys that causes them to go to the bathroom so frequently. They also wanted to better understand the myths about SCD. The following are examples of some of their quotes related to myths. Some people say they cant get it, only Mediterranean people or black people. Some kids dont know if everything is true. [There is] one kind of sickle cell anemia where your eyes turn yellow if you dont drink enough and theres one where your eyes are always yellow. I have the one where your eyes are always yellow. Summary of Content Analysis This section described the themes from the focus groups of the active and nonactive members. The groups described the symptoms, PCMT, and treatments for SCD. The active members gave more descriptive responses for each category. The non-active members frequently did not know or did not talk about the items related to many of the themes. Frequency of Attendance and Knowledge of SCD The frequency of attendance data was obtained from a log kept by the Hop To It Program from September 2000 to May 2003. The log tracked attendance at weekly tutoring, monthly activities, summer camp, and the store. A sum of the total events for the past three years was derived. The store was not included as there was not an opportunity to socialize with other children during the store event. The summer camp lasted five days each summer and counted as five events. The number of events attended ranged from 0 to 75. The average number of events attended was 21.60.

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75 To determine if knowledge of SCD was related to the number of Hop To It events attended, the attendance data were explored with active members scores on the knowledge of SCD survey. There was no significant correlation between the number of events attended and the survey score (r 2 =0.0353). Figure 1 displays the relationship between total number of events attended and score on survey. 0 2 4 6 8 10 12 14 16 18 20 22 24 26 0 5 10 15 20 25 30 35 40 45 50 55 60 65 70 75 Total Number of Events Attended Total Score on Survey Figure 1 Relationship between total number of HTI events attended and score on survey. N=18. To determine whether there was a relationship between academic grade level and knowledge of SCD, the active members scores from the knowledge of SCD survey were explored with the grades of the active members. There was a very slight correlation between the grade of the child and the survey score (r 2 =.0987); however, the correlation was not significant. The data, therefore, indicated that there was not a relationship between the childs grade and score on the knowledge of SCD survey. See Figure 2.

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76 0 2 4 6 8 10 12 14 16 18 20 22 24 26 0 1 2 3 4 5 6 7 Grade Total Score on Survey Figure 2. Relationship between grade and total score on Knowledge of SCD Survey. n=18. Summary To determine if there was a difference between the active and non-active members in the knowledge of SCD, the results from the knowledge of SCD survey and the content analysis from the focus groups were reviewed. The average scores for the active and non-active members were similar; however, there were multiple differences in the responses between the active and non-active on the focus groups. These differences must be interpreted with regard to the limited number of non-active participants. The interpretation of these data will be discussed in chapter five. Research Question 2: Is there a difference in the beliefs about how SCD affects ones life between 1) children with SCD who are active in the HTI program and those who are not active and between 2) caregivers of children with SCD who are active in the HTI program and those who are not active? To answer this research question, children and caregivers completed a survey entitled Degree Sickle Cell Disease Affects Life (DSCDAL) where they

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77 rated the degree that different areas in their life were affected by SCD. In addition to the survey, the children were asked about ways that SCD affected their life during the focus groups. The results from the survey and a content analysis of the themes from the focus groups will be presented in this section to answer this research question. There were four groups of participants who completed the DSCDAL: the children and caregivers in the active and non-active groups. In the child group, there were 18 children in the active group but only 2 children in the non-active group. Therefore, the descriptive statistics for the DSCDAL-child data will be presented only for the active members supplemented by the qualitative information from the DSCDAL-child data from the non-active members. In the caregiver group, there were 26 caregivers of active members and 12 caregivers of non-active members. Descriptive statistics for the DSCDAL data will be presented for both groups. Degree Sickle Cell Disease Affects Life Survey (DSCDAL) The DSCDAL included six questions about how SCD affects the life of a family and thirteen questions about how SCD affects the life of a child. Examples of the family component included not having enough money for things we need and taking trips and vacations. Examples of items on the child component included spending time with friends and having to stay home from school. The rater was asked to decide how frequently each item affected his/her life or the life of the child followed by a Likert scale of never, sometimes, and often. The caregivers were asked to rate their own experiences and to rate their

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78 perception of the experiences of their child. The children were asked to rate their own experiences and their perception about the way SCD would affect a fictitious family who had a child with SCD. The overall scores, family component scores, and child component scores of the DSCDAL survey will be presented for the children and caregivers in the active and non-active groups, followed by an analysis of the score for each item. Overall Scores on DSCDAL The overall scores on the DSCDAL ranged from 36-38 possible points. There were 12 possible points on the family component for both children and caregivers, and there were 26 possible points for caregivers and 24 possible points for children on the child component due to the different versions of the instrument. For all groups, the mean for the overall score was less than 10 points. The active children, however, had a lower overall mean than the active caregivers did even though there were more possible points on the caregiver version. The overall scores for the non-active members were two and six, which were below the active childrens mean score of 9.33 for the active children. Therefore, two non-active children had lower scores than the overall mean of the children who were active members. Figure 3 presents the data in a bar graph to visually compare the three groups, and the scores from the DSCDAL-Child and Caregiver version are presented in Table 6 to compare the caregivers and the childs ratings. Higher scores indicated a higher rating of the degree that one believed SCD affected ones life.

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79 0.00 1.00 2.00 3.00 4.00 5.00 6.00 7.00 8.00 9.00 10.00 Family Child Total Children-A Caregiver-A Caregiver-NA Figure 3 Comparison of DSCDAL Scores for Active children and Caregivers and Non-Active Caregivers. n=18 children-A; n= 26 caregivers-A; n=12 caregivers-NA. For all three groups, the standard deviations were high compared to the mean scores, indicating heterogeneity within the groups. It was therefore important to compare the distribution of the scores in each group to understand where the majority of the scores fell. Table 7 presents stem and leaf diagrams to show the distribution of the overall scores for each group. The stem and leaf diagrams show that each group had clusters of scores in the low (0-5), low middle (6-10), and high middle (11-16) range of the scores. The lowest score for each group was a zero. The highest overall score for the active children

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80 Table 6 Descriptive Data for the Degree SCD Affects Life ( DSCDAL) Child Child A a A NA b A A NA Poss. Range 0-12 0-12 0-12 0-26 0-28 0-28 Range 0-9 0-12 0-7 0-12 0-16 0-8 Median 4.0 3.0 5.0 5.0 4.0 3.5 Mean 4.17 3.19 4.42 5.17 5.38 3.25 SD 2.77 3.25 2.19 3.50 4.16 2.83 Child Caregiver A A NA Poss. Range 0-36 0-38 0-38 Range 0-21 0-28 0-14 Median 10.0 7.5 7.5 Mean 9.33 8.58 7.67 SD 5.86 6.78 3.82 Note. n=18 for children; n=26 for caregivers (A); n=12 for caregivers (NA) Total Score Child Component Family Component Caregiver Caregiver

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81 Table 7 Stem and Leaf Diagrams for Overall Scores On DSCDAL Children-A a Caregivers-A Caregivers-NA b 0 0 0 0 0 0 0 0 0 0 1 0 0 2 2 0 2 2 2 2 0 0 0 3 3 0 3 0 4 0 4 0 0 5 5 0 5 0 0 6 0 6 0 6 0 0 7 0 7 7 7 0 0 8 8 0 8 8 0 9 0 1 9 1 0 0 0 1 0 1 0 1 1 1 1 1 2 1 2 2 1 1 3 3 1 3 3 1 3 1 1 4 1 4 1 1 5 1 1 6 1 6 1 1 1 1 1 1 1 1 9 1 1 2 2 0 2 2 1 2 2 2 2 2 2 2 2 2 2 2 2 2 2 2 2 2 2 2 8 2 a A=Active member b NA=Non-active member

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82 was 21, and the highest overall score for the active caregivers was 28 while the highest overall score for the non-active caregivers was only 14. When comparing the scores of the active and non-active caregivers, the nonactive caregivers had a lower mean score than the active caregivers. However, the active caregivers had many scores between 0 and 2 (low) and between 12 and 16 (high middle), while the majority of the non-active caregivers scores fell between 6 and 10 (low middle). Therefore, the mean score does not represent the pattern of scores for these groups because the active members had clusters of scores in the low and middle-high range while the non-active members had scores in the middle range. On the family and child components, all three groups scored between three and five, even though there were twice as many points on the family component. The non-active members had scores between zero and three. The non-active caregivers scored lower than the active caregivers and children on the family component, but they scored higher than the active caregivers and children on the child component. These results will be further discussed in chapter five. Item Analysis of the DSCDAL On the DSCDAL, the participants were asked to rate the degree that each item affected them from 0 (not at all) to 1 (a little bit) to 2 (a lot). The higher the score, the more the person believed that SCD affected that area of their life. To determine which items were rated as having the highest and lowest impact on the participants, an item analysis of the average score for each item was conducted. The item analysis scores will therefore range from zero to two. See Figure 4 for a display of the average scores for each

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83 item on the family component and Figure 5 for the average scores for each item on the child component. See Appendix J for a listing of all the scores. The items rated the highest by all three groups was missing work and not having enough money. The next highest item rated by the children in the family component was taking trips and vacations, which was rated third and fourth highest by the caregivers. The item of going to religious events was rated the lowest or second lowest by the caregivers, and the children gave caregivers every day task the lowest rating. The non-active children rated most of the items with a zero; however, both of the non-active children rated caregivers every day tasks with a one. In the child component, all three groups rated missing school as one of the top three items. The children also rated spending time with friends and doing after school activities as the second and third highest item. The items of sports and moving body had a middle ranking by all three groups. The items of getting along with caregiver and self-care had a low rating by all three groups. In this section, while these items were rated as the highest, it is important to note that the average ranking for each items was less than one, indicating an impact of a little bit or sometimes. Content Analysis of the Focus Groups A content analysis of the focus groups was conducted to determine the components of SCD that affected ones life by determining the frequency of each mentioned theme. The responses of the active and non-active member groups were compared. Table 8 represents a content analysis that compares the responses of the active and non-active members on topics related to the impact of SCD on ones life, including the themes of hospital/missing school, school, PE/sports, and telling people about SCD.

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84 On the table, a blank space under Non-Active Members indicates that they did not mention this theme. 0.00 0.20 0.40 0.60 0.80 1.00 1.20 1.40 Caregiver's every day tasks Having enough money Going to religious events Caregivers doing fun things Trips/vacations Caregiver missing work Caregivers-NA Caregivers-A Children-A Life Not Affected Life Affected ` Figure 4. Item Analysis of the Family Component of the DSCDAL. n=18 active children; n=28 active caregivers; n=12 non-active caregivers.

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85 0.00 0.20 0.40 0.60 0.80 Getting along with caregiver Self-care Child every-day tasks Getting along with siblings Getting along with friends Getting good grades Homework Sports Moving body Spending time with friends Doing after-school activities Missing school Caregivers-NA Caregivers-A Children-A Life Not Affected Life Affected Figure 5. Item Analysis of the Child Component of the DSCDAL. n=18 active children; n=28 active caregivers; n=12 non-active caregivers.

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86 Table 8 Content Analysis of Themes Related to SCD Affecting Life Question: How long did you stay in the hospital? Active Members # Non-Active Members # Days 4 Weeks 2 Hours 2 Long time 1 Month 1 One week 1 Question: What was the hospital like? Active Members # Non-Active Members # Positive 24 Positive 1 Negative 16 Other kids 10 Nurses 7 Question: What impact does missing school have on you? Active Members # Non-Active Members # Miss a lot of school/instruction 7 None 0 No impact 5 Get too much attention 2 Tired 1 Question: What does your teacher do differently because you have SCD? Active Members # Non-Active Members # Makes me drink a lot of water 4 Nothing different 2 Going to the bathroom 6 Gives privileges 3 Teacher is concerned 2 Question: What is PE like? Active Members # Non-Active Members # Dont go to PE 6 Dont take PE sometimes 3 Dont take PE sometimes 2 Not a problem/always go to PE 1 Not a problem/always go to PE 1

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87 Table 8. Content Analysis of Themes Related to SCD Affecting Life (Continued) Question: Do you do anything differently than your friends when playing a sport? Active Members # Non-Active Members # Yes 4 No 3 Dont play contact sport 5 Question: Who knows that you have SCD? Active Members # Non-Active Members # Someone at school 16 Someone at school 1 Dont tell people 11 Dont tell people 6 Friends 10 Friends 2 Family 6 Question: What would you say to someone if you had to tell them you had SCD? Active Members # Non-Active Members # Generic response 3 About physical symptoms 3 Just like everyone else 1 I dont know 1 Question: What do your friends/ Question: What do you tell people other kids say about SCD? when they ask why you were out? Active Members # Active Members # Would say negative things 21 Get defensive 7 Try to find out where you were 8 Dont tell them 7 Friends are neutral/positive 8 Always tell them 7 Non-Active Members # Non-Active Members # Dont know 2 Nothing 1

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88 Hospital/missing school Active members. During the focus groups, many of the active member children spoke about their experiences in the hospital and their experiences returning to school after being in the hospital. When asked how long they typically spent in the hospital, the responses ranged from days to a long time. The response days was mentioned the most frequently. When asked what they went to the hospital for, the most frequent response was treating SCD symptoms, followed by wellness/prevention. The most frequently mentioned way of treating SCD symptoms was shots or needles. Examples of wellness/prevention techniques included blood tests, x-rays, and MRI/CAT scans. The active members discussed their hospital experiences. They mentioned more positive experiences in the hospital than negative experiences. For positive experiences, they spoke about the games at the hospital and getting visitors. The negative aspects that were mentioned included bad food and getting woken up in middle of night. They also discussed how the nurses were nice because they brought them things, such as ice cream. The active members spoke about avoiding the other kids in the hospital because of the fear that they may have lice, germs, or cancer. When asked about missing school, the active members either said that they either missed a lot of instruction or there was no impact. The following responses are examples of their comments: The comments demonstrate the range of comments made related to each theme. I dont get no homework when I go back. They be tryin to send you all that work.

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89 Sometimes they just keep going on. . .Like they keep talking about what they did. . and they dont stop to teach what they were doing while you were in the hospital. . and they just give you like work and tell you how to do it. They be explaining what to do. N on-active members. The non-active members only mentioned a hospital experience two times, and these comments were related to treating SCD symptoms. These responses are in contrast to the multiple positive and negative experiences of the active members. Experience in School Active members. During the active member focus groups, the most frequent response to the question What does your teacher do differently because you have SCD? was allowing them to drink water and go to the bathroom. Some children spoke about getting privileges because they had SCD. One girl talked about the other students responding to the special treatment from the teacher. She [teacher] lets me eat snack earlier. Cause we have it at like 10 and people be sayin how come she get to eat food earlier. They be trippin. . .I just say you dont know what I have. The non-active members did not speak about missing school. Instead, they said that they do not do anything differently in school. Physical education/Sports Active members. The responses regarding Physical Education (PE) and sports varied. For the active members, the most frequent response about PE was that they did

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90 not take it. Others said they took PE sometimes or not at all. The following quotes described the active members experiences with PE. If you sick, they tell you that you gotta have a note. . I just dont dress out or change gym clothes. I just sit down. [When asked if she did not take PE because of sickle cell disease, she said] Mmm hmmm. Yeah, if you like, they somehow they give you PE and you didnt want that, you tell the teacher that you wouldnt want to do it. . sometimes the guidance counselor would change it or say that you can go to the library during that time or other places. Well I dont go to PE anymore so thats why I changed it. [When asked if he can do PE, he replied] sometimes. Several active members mentioned playing a non-contact sport, such as karate or baseball. They also mentioned doing something differently when playing a sport, such as having to catch their breath or getting exhausted. I have to whenever I am in a race, I can run really far but I get exhausted. .like way earlier than they do. I am the fastest person in the class. I am one of the fastest but I always get tired really fast. I think I just about know that it has to do with sickle cell. In the race, I always finish, but after that, I have to put my hands on my knees and I have to catch my breath a lot. After every single race. Non-active members. The non-active members said that they did not take PE sometimes or that it was not a problem. They did not mention doing anything differently than their friends when playing a sport. This area did not seem to be problematic for them.

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91 Telling people about SCD Active members. For the active members, the most frequent response when asked who knows that you have SCD? was someone at school, such as the teacher, nurse, guidance counselor, or PE teacher. A few said that the whole class knew. Another frequent response by many of the active and non-active members was not telling anyone. Several mentioned keeping SCD a secret or not telling all of their friends. The most frequent response when asked what their friends/other kids would say was in the category of negative statements, such as being contagious, not wanting to be near them, or being called names. They also mentioned getting unwanted attention. Theyd back away from me and say its not contagious. And I say I dont want you by me anyway. People think its like having AIDS. Some people be trippin. They think its contagious. Well they wouldnt want to be my friend if they knew. They would say uhhhh and they would say Im not your friend. Some said that their friends/other kids would give neutral or positive responses. An example was an active member who said mostly my friends wouldnt care because Im just like everyone else. Therefore, telling other kids where they were when they were out sick was mentioned an equal number of times as not telling anyone or getting defensive. One active member said that her friends actually tell her, Youre lucky you have sickle cell because you get to go to Disney world and all these fun places, and you get a wish. I want a wish.

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92 In response to what the active members perceived as negative responses about SCD, these active members said they would give responses that were either defensive when asked where they had been or they would not tell anyone. If it was contagious, we wouldnt go to school. None of your business. I always tell them-mind your own business. Call them names, cuss. I be at your, um, I be at your momma house. They [friends] be calling you at home. How else we supposed to be sick? I dont tell them. [I say] I was at the hospital. N on-active members. The non-active members did not mention that telling people about SCD was a problem, nor did they report that telling others was a positive or neutral experience. Instead, they said dont know or nothing. Summary The themes mentioned were in the areas of hospital/missing school, school, PE/Sports, and telling people about SCD. For the majority of the themes, the nonactive members did not provide a response. The active members provided descriptive responses related to the social manifestations of SCD. Frequency of Attendance and DSCDAL Frequency of attendance data also was explored with the active members scores on the DSCDAL to determine if there was a correlation between the two. Figure 6 displays the relationship between total number of events attended and the total score on

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93 the DSCDAL. There was a very slight positive correlation between the number of events attended and the DSCDAL score (r 2 =0.1238); however, it was not significant. When the frequency of attendance data for each child also was compared with the corresponding caregivers score on the DSCDAL, but there was not a significant correlation (r 2 =-0.02) for this analysis either. See Figure 7. 0 5 10 15 20 25 0 10 20 30 40 50 60 70 80 Total Number of Events Attended Score on DSCDALChild Figure 6 Correlation between events attended and score on DSCDAL-child version. 0 5 10 15 20 25 30 0 10 20 30 40 50 60 70 80 Total Number of Events Attended Score on DSCDALCaregiver Figure 7 Correlation between events attended by the child and the caregivers score on DSCDAL-caregiver version.

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94 Summary The DSCDAL scores provided information on the degree that SCD affected the lives of active and non-active children and families. The average overall score for all groups was less than 10, indicating that they believed SCD had some or a little impact on their life but not always or a lot. The focus group data provided more information about the areas of ones life were affected by SCD, such as spending time in the hospital, missing school, taking PE, and telling people about SCD. There were different responses between the active and non-active members. In general, the nonactive members did not make very frequent responses about SCD affecting their life. Finally, when reviewing attendance data, there was a slight but not significant correlation between frequency of attendance and DSCDAL-child scores, but there was not a correlation for the DSCDAL-caregivers. Research Question 3: Is there a difference between the behavioral and emotional strengths of the children who are active in the Hop To It program and the children who are not active members. Behavioral and Emotional Rating Scale (BERS) Descriptive Statistics The Behavioral and Emotional Rating Scale (BERS) (Epstein & Sharma, 1998) is a 52-item strength-based behavioral checklist designed for caregivers or teachers of children ages 5 to 18 years. This instrument was chosen to emphasize behavioral and emotional strengths rather than a childs deficits, problems, or pathology. Table 9represents the mean and median scores for the Behavioral and Emotional Rating Scale (BERS) for the active and non-active groups. The BERS has a mean score of 100 and a

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95 standard deviation of 15. The table indicates the classification range for the Strength Quotient and Subscale scores, and Table 10 indicates the mean, standard deviations, and classification for the subscale scores. Table 9 Mean and Median of BERS Strength Quotient in Active and Non-Active Participants n M Classification SD Median Active 28 111.36 Above Average 13.25 109 Non-Active 12 119.17 Above Average 13.38 123 Note. N=25 active members; n=12 non-active members. 3 sets of data from active members are missing. Table 10 Mean and SD Scores for Subtests of BERS A Category NA A Category NA Interpersonal 11.36 Avg 13.08 3.62 Above Avg 6.56 Family Involvement 12.25 Avg 14.92 3.11 Superior 4.87 Intrapersonal 12.607 Above Avg 15.50 3.72 Superior 6.32 School Functioning 11.036 Avg 11.92 2.89 Avg 5.16 Affective 13.143 Above Avg 13.92 2.41 Above Avg 3.09 Note. N=25 active members; n=12 non-active members. 3 sets of data from active members are missing. SD Mean

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96 The Strength Quotient represents a measure of emotional and behavioral skills, competencies, and characteristics that create a sense of personal accomplishment, contribute to satisfying relationships, enhance ones ability to deal with adversity and stress, and promote ones development. The mean Strength Quotient score for the ratings of the active and the non-active caregivers was in the Above Average range. Both groups fell in the Above Average Range for Affective Strength, which indicates a childs ability to accept and give affection and Average range for School Functioning Strength (competence in school). Non-active members were in the Above Average Range for Interpersonal Strength (ability to control emotions in public) while active members were in the Average range. The Non-Active group fell in the Above Average Range for Family Involvement (relationship and participation with family) and Intrapersonal Strengths (self-competence and accomplishments), while the Active group fell in the Average and Above Average Range. The scores indicate that the Non-Active group scored slightly higher on all domains. Item Analysis To compare the responses on individual items, an item analysis was conducted to determine the average ranking for each item. The item analysis was conducted with the information from both the active and non-active caregivers. See Appendix K for the complete item analysis. Frequency of Attendance and BERS Scores The BERS strength quotient scores were explored with the frequency of attendance scores to determine if there was a correlation between the two. The results are displayed on Figure 8. There was no significant correlation between the scores on the

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97 strength quotient and the frequency of attendance. As attendance scores increased, the BERS scores remained in the same range. 0 20 40 60 80 100 120 140 160 0 10 20 30 40 50 60 70 80 Frequency of Attendance Strength Quotient on BERS Figure 8. Relationship Between Frequency of Attendance Scores with the Strength Quotients on the BERS. n=18 active members. Summary This chapter reviewed the answers to the three research questions related to knowledge of SCD, SCD affecting ones life, and the behavioral and emotional functioning of children with SCD. The results of the survey of knowledge of SCD, the DSCDAL, the BERS, and the content analysis of the focus group were shared in this chapter to answer the research questions. A discussion of the results will be shared in chapter five.

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98 Chapter V Discussion The purpose of this study was to evaluate an intervention, the Hop To It (HTI) program, that provides academic and social support to children and families affected by Sickle Cell Disease (SCD). There is a paucity of literature on program evaluations of interventions for children with SCD. Moreover, the evaluations often do not include some or all of the following components: control groups, measures that are sensitive to program goals, qualitative measures, and direct information from the children (Kaslow et al., 2000; Telfair & Gardner, 1999; Ievers, Brown, Lambert, Hsu, & Eckman, 1998; Brown, Buchanon, Doepke, & Eckman, 1998; Thomas & Taylor, 2002; Butler & Beltar, 1993). This study included all four of these components in the evaluation. Children and families who were active members in the HTI program were compared to the children and families who were non-active members in the program. A measure that was derived from the HTIs mission statement and sensitive to program goals, the Knowledge of SCD Survey, was used in the study in addition to a standardized measure, the Behavioral and Emotional Rating Scale (Epstein & Sharma, 1998) and a measure that was modified from past research, the Degree Sickle Cell Disease Affects Life (DSCDAL) (Telfair & Gardner, 1999). Finally, this study used the direct qualitative measure of focus groups to capture the childrens experiences with both SCD and with the HTI program.

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99 Data collection of the measures occurred in two stages. The first stage included the collection of data from the caregivers using the DSCDAL-Caregiver and the BERS. The second stage included the collection of data from children using the DSCDAL-Child, the Knowledge of SCD Survey, and participation in focus groups. In addition, during the second stage, a researcher conducted informal discussions with the caregivers. Anecdotal data from these sessions will be used to supplement the findings. Overall, the results from this study supported the hypotheses that there was a difference between the active and non-active members in the Hop To It program. This chapter will describe how the results support each of the hypotheses and will describe new hypotheses related to each of the research questions. Following an analysis of each hypothesis, this chapter will present the limitations, future research, and implications of the study. Hypothesis 1: The children who are active members in the Hop To It program will be more knowledgeable in the symptoms of SCD, pain crises management, and various treatment methods than the children who are not active members. The results from this research question indicate that the active members had more knowledge of the symptoms, pain crisis management techniques, and treatments than the non-active members. The difference between the two groups was not found on the Knowledge of SCD Survey but was found in the responses given during the focus groups. There are two possible hypotheses for this finding that the non-active members were less knowledgeable than the active members. The first hypothesis is that the non-active members experienced fewer symptoms than the active members, which may have been the reason that they had not sought support or interventions from the HTI program. The

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100 second hypothesis is that the non-active members were less familiar with signs and symptoms of SCD because their caregivers did not discuss the manifestations and implications of the disease with them. These hypotheses will be described further in this section, followed by a description of some of the similarities between the two groups. These similarities represent some general characteristics of children with SCD. The first hypothesis is that the non-active members were less familiar with the symptoms than the active members because they experienced less frequent and intense symptoms of the disease and did not participate in the HTI program because they did not find a support group to be necessary. This was not found on the results of the survey but the results from the focus groups. The results on the knowledge of SCD survey represented the childrens ability to determine whether an item related to SCD was true or not true while the responses from the focus groups represented the childrens ability to describe or explain the symptoms, PCMT, or treatments of SCD. The latter is considered to be an indication of a higher level of knowledge. When comparing the explanations from the focus groups, the active members were more articulate in their descriptions of the disease than the non-active members. The non-active members were much more likely than the active members to answer a question with responses, such as I dont know, never heard of it, or not a problem. An example of the response of an active member to the question, What is SCD? is Its a disease that, like, changes some of the cells that are in your blood and it makes your kidneys smaller. And it makes you exhausted a lot. Two examples of responses from non-active members to the same question are that SCD were sickness problem and some kind of disease. Therefore, it seems that while the non-active members were able

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101 to recognize the symptoms on the Knowledge of SCD Survey, they were less able to describe them during the focus groups. Another example of the difference in explanations was the response to the question What is a pain crisis? The active members most frequently described the painful feelings, using descriptive terms, such as like somebody is hammering and like needles in the heart. These descriptions are consistent with the words that children with SCD used in past research to describe a pain crisis, such as pins and needles, stinging, and squeezing (Graumlich, Powers, Byars, Schwarber, Mitchell, & Kalinyack, 2001). In contrast, the non-active members first said that they could not remember a pain crisis. Then later during the focus group, they mentioned that they thought they had had one. A pain crisis is the most debilitating symptom of SCD (National Institute of Health, 2002), and when one experiences a pain crisis, it is likely something that a person remembers. While there were only three participants in the nonactive group, their lack of familiarity with the term pain crisis indicated that they most likely did not experience them or did not experience them as frequently or severely as the active members did. The less frequent or less intense occurrence of symptoms may be one of the reasons that the members in the non-active group are not active in the support group. SCD may have affected the non-active members less than it affected the active members, and their caregivers may not have found a support group for the children to be a priority. Therefore, the non-active members may be non-active due to a lack of need or the perception of a lack of need for a weekly or monthly support group for SCD.

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102 The second hypothesis is that the non-active members were less familiar with signs and symptoms of SCD because their caregivers have not discussed the manifestations and implications of the disease with their children. This hypothesis was developed in response to anecdotal data from the caregivers. The caregivers indicated that the non-active children had experienced many of the same symptoms as the active members. The caregivers were able to describe the symptoms that led to a pain crisis, such as eyes turning yellow, moaning, and hurting in different parts of the body. One father said that when his typically active child becomes very inactive and gets a temperature, the father knows to take him right to the hospital. Despite the descriptions from the caregivers, the non-active members were not able to describe these symptoms during the focus groups. Therefore, it seems that the non-active children have experienced pain crises, but the experiences may have not have been discussed or reiterated at their home enough to make the children familiar with the terminology. These two hypotheses describe some reasons that the results may have differed for the two groups, but there also were some similarities in the patterns of responses between the two groups. The non-active members had scores on the knowledge of SCD survey that were in the same range as the active members and were similar to the mean score for the active members. These results seem to indicate that both groups were familiar with or had heard of approximately two-thirds of the 30 items on the survey. Therefore, all the participants seemed to have a basic familiarity with the items related to SCD. The children in this study demonstrated knowledge of symptoms and precautions, such as preventative PCMT and treatments for the disease. This is consistent with

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103 research by Gentry, Varlik, and Dancer (1997) who found that children with SCD were familiar with medical and health precautions. A review of the item analysis indicated that the both groups were more familiar with symptoms that the children with SCD experienced at an older age. For example, they were the least familiar with the item of puffy hands/feet, which is a symptom in infants. It is possible that the correctly identified items represented items that the participants had experienced recently or had experienced intensely rather than items that they knew were a part of SCD. Therefore, the results of this survey may be more representative of the participants experience with SCD rather than their knowledge of the symptoms, PCMT, and treatments of the disease. Similar to the symptoms, the children most likely marked PCMT and treatments that they had used in the past, such as avoiding hot and cold temperatures, drinking fluids, and getting blood tests. These treatments are all recommended by the US Department of Health and Human Services (1993). A review of the item analysis for PCMT and treatments found that the high percentage of participants marked items as belonging to PCMT that were actually not true. One reason for this is that the participants may have used these remedies to relieve symptoms of other illnesses, such as the common cold or bruises. They may not have been able to distinguish whether they had used these treatments for ailments not related to SCD and ailments related to SCD. It is also possible that the children used some of these treatments to relieve pain. Despite the lack of clinical evidence that these techniques are valid treatments, they may have been helpful at one time to the child to relieve symptoms.

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104 The item analysis also indicated that the both groups incorrectly identified more non-true items than true items. This may indicate that children believe that some items were a result of SCD when they were actually not. This is consistent with the information provided by the pediatric hematologist that children frequently blame some items on SCD that are not caused by SCD. This may promote the children to attribute non-SCD related problems to SCD and may feel less control over other areas of their life. The ability to differentiate between myths and facts is crucial because one study showed that patients who were more educated were more active members of the health care team (Logan, Radcliffe, & Smith, Whitley, 2002). Therefore, these myths that were believed to be true should be included in education support sessions for children with SCD. Despite the findings that the active members incorrectly identified many of the myths as true, they were able to identify and describe the majority of the true symptoms. They therefore demonstrated a basic knowledge of SCD and a greater ability to articulate this knowledge than the non-active members. Whether this difference is due to the type of people who participated in an intervention or the lack of discussion about SCD in the non-active homes, it shows that the joint effort between families and the HTI program has been effective in teaching children about the symptoms, PCMT, and treatments of the disease. This is consistent with past research that finds children and caregivers who participate in an intervention had a greater improvement in knowledge of SCD than those who did not participate (Kaslow et al., 2000).

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105 Hypothesis 2: The children and families who are active members in the Hop To It program will believe that SCD interferes with or inhibits fewer areas of their life than the children and families who are not active members. The hypothesis states that children who are active members in the HTI program would have less negative beliefs about the way that SCD affects their life than those who are not active members. This hypothesis is derived from research that shows that participation in a support group improves ones adjustment (Telfair & Gardner, 1999). The opposite result was found for the children in this study. The DSCDAL scores for the non-active children were lower than the mean DSCDAL score of the active children, and non-active children gave less salient descriptions of their experience than the active children. The non-active children did not mention many experiences in the hospital or in school that were related to SCD while the active children made frequent comments about the impact of SCD on their social and school life. Similar to the responses regarding the knowledge of SCD during focus groups, many of the non-active members responses indicated that the topics were not a problem or the topic was not discussed during the focus group. During the focus groups, there was a difference in the amount that the active and non-active members spoke about their experience in the hospital and their experience returning to school after being in the hospital. The active members mentioned many positive and negative experiences in the hospital and said that their time in the hospital ranged from days to a month while the non-active members did not speak about their hospital experience at all. The active members also spoke about missing instruction and having to catch up when they came back to school while the non-active members did not

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106 speak about this. This concern about missing school has been cited in past research (Gentry, Varlik, & Dancer, 1997). Fortunately, other research did not find a difference in academic achievement between children with SCD who missed a small amount of school (less than two weeks of school per year) compared to those who missed a larger amount (greater than one month of school) (Eaton, Haye, Armstrong, Pegelow, & Thomas, 1995). This finding in combination with other factors mentioned during the focus groups, such as communication between home and school and support from the teacher, may buffer a child from having low academic achievement following many absences from school. One theme that both the active and non-active members spoke about was telling people about SCD and contagion or fear of contagion. The participants mentioned a fear that the other children at school would think that they were contagious too. The difference in the two groups was that the active members spoke more about what they would say to other children when asked about SCD and getting teased about SCD. This theme did not emerge for the non-active members. Findings from past research found that that children with SCD were happy in general, but rated talking about SCD, having the disease, and social relationships as items that were upsetting to them (Gentry, Varlik, & Dancer, 1997). In another study, male and female patients with SCD reported having the most problems in areas of activity disruption, teasing, and delayed growth (Barbarin et al., 1994). While delayed growth was not mentioned at all and activity disruption was only mentioned one or two times, the active members mentioned teasing over 20 times during the focus groups. The non-active members did not mention teasing nor did they mention that telling people about SCD was a problem. However, these studies show that

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107 talking about SCD is difficult for children with SCD, and this is likely a result of getting teased about SCD in the past. This hypothesis also states that caregivers and families who are active members in the HTI program would have less negative beliefs about the way that SCD affects their life than caregivers of non-active members. This was true for the caregivers. The mean DSCDAL score for the non-active caregivers was higher than the mean score for the active caregivers, indicating that non-active caregivers believed that SCD affected them more than active caregivers. However, a review of the distribution of scores indicated that the active caregivers scores fell into two clusters, one below the mean of the nonactive caregivers and one above the mean of the non-active caregivers. Therefore, it was difficult to determine whether the degree that SCD impacted ones life influenced ones decision to participate in a support group because the data from the active caregivers were so variable. Anecdotal data from the caregivers found that both the non-active and active caregivers spoke about difficult situations for their children in school and with peers related to SCD. For example, anecdotal data from the caregivers provided evidence that caregivers of active and non-active members had similar experiences with the school and with the childs participation in sports. The nonactive members mentioned that they sometimes did not take PE; however they did not articulate any other problems at school or in PE. In contrast, the non-active caregivers provided clear evidence that some problems do occur for these children at school. It is therefore possible that the non-active children were not aware of these problems or did not feel comfortable talking about them during the focus

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108 group. They also may not have remembered them because they did not have a signficant impact on their lives. Overall, SCD seems to have an impact on both active and non-active children and caregivers lives. The active children were able to describe their experiences in more detail than the non-active children, while all the caregivers were able to articulate experiences where SCD impacted their life. Hypothesis 3: The children who were active in the Hop To It program will have a higher behavioral and emotional strength quotient than the children who were not active members. This hypothesis states that the active members will have higher behavioral and emotional functioning than the non-active members. While the mean for both groups was in the Above Average range, the opposite result was found. The mean for the non-active members was higher than the mean for the active members, indicating that the non-active caregivers rated their children has having more behavioral and emotional strengths than the active caregivers did. It is possible that the reason that the non-active members do not participate in HTI was because the caregivers feel their children have behavioral and emotional strengths and do not need to participate in a support group. It is important to note that the subtest that the non-active members rated the highest was the Intrapersonal Subtest, indicating that the non-active caregivers believed their childrens highest skill was in his/her outlook on his/her competence and accomplishments. As the non-active caregivers rated this section the highest, it is likely that they believed their children were already competent and accomplished in this area and may not have needed a support group.

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109 Because the results found that caregivers who rated their children higher on the BERS were the caregivers who did not send their children to the HTI program, it was necessary to determine if the active caregivers who rated their children higher on the BERS sent their children to fewer HTI events than caregivers who rated children lower on the BERS. Similar to the results for relationship between the DSCDAL scores and the frequency of attendance scores, there was not a significant positive or negative correlation between the BERS scores and the frequency of attendance scores. This indicated that the frequency the active caregivers sent their children to HTI was not linked to the caregivers beliefs about their childs behavioral and emotional functioning. Past research has been inconsistent in determining whether the frequency of attendance in a support group is linked to adjustment and well-being. Nash and Kramer (1994) found that the length (not frequency) of attendance was negatively correlated with psychosocial interference and psychological symptoms. This indicated that the more one attended, the fewer symptoms he/she had. In contrast, Telfair and Gardner (1999) found that the frequency of attendance was not predictive of physical well-being or group satisfaction. This study found that the frequency of attendance was not correlated with behavioral and emotional functioning. More conclusive research is needed in this area. Limitations and Future Research The results of this study must be interpreted in lieu of several study limitations. The limitations include the method of selecting participants, the small sample size, the lack of a stratified sample by age, the broad definition of active and non-active members, the lack of pre-test data, and the use of two non-standardized measures. Each will be described in more detail.

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110 Selection of Participants As this study was a program evaluation, the sample of participants was a convenience sample of those who were either active in the HTI program or were on a contact list maintained by the HTI program. These participants may be different than the other children and families affected by SCD who reside in Tampa who did not participate in the study. Those who did not participate either elected not to participate after being contacted, never retuned the phone call inviting them to participate, cancelled their appointment, did not show up for their appointment, or were never contacted because their contact information was not available from the HTI program or local pediatric hematologists. To help understand why people chose not to participate in both the HTI program and the research study, a researcher asked the caregivers who attended the child stage to explain why they thought that the other families did not attend the meeting that day. The researcher conducted informal focus groups with these caregivers to obtain additional anecdotal data for the study. The most common response from the caregivers was that other caregivers are in denial that their child has SCD and they are waiting for the onset of symptoms. This is consistent with qualitative research by Thomas and Taylor (2002) where adult participants with SCD reported having parents who denied their illness as a child. Related to this theme, the caregivers thought that other caregivers might be afraid, embarrassed, or stressed with dealing with it. Another theme mentioned was that the other caregivers are too busy or exhausted to bring their child to a research study on a Saturday. Finally, others mentioned logistics, such as not having transportation or a babysitter for the other children. These reasons could account for some differences

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111 between the two groups. Therefore, the active and non-active members in this study were individuals who chose to participate and may differ from individuals who did not chose to participate or were not available to contact. This is not deemed to be a problem because the intention of the study was to learn about the characteristics of the population who chooses to participate in a support group compared to those who do not chose to participate. Small Sample Size The small sample size of the non-active members compared to the active members was problematic. The intended number of participants for the study was 60 families, including 30 families who were active members in the HTI program and 30 families who were non-active members in the program. A total of 45 families, 32 who were considered active members and 13 who were considered non-active participated. The researchers were able to acquire the intended number of active members but only acquired fewer than half of the intended number for non-active members. There are several possible reasons that people did not participate in the study and for the difference in the numbers between the active and non-active members. The first possible reason for the difference was that the non-active members were not familiar with the program director who made the initial contact to ask the potential participants if they were interested in participating the study. Rosenthal and Rosnow (1975) recommended that a person familiar to the future participants should make the initial contact. The active members were very familiar with the program director while the non-active members had never met her. In the future, a liaison who is familiar with the non-active members, such as a pediatric hematologist or school personnel should

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112 make the initial contact. The second possible reason for the small sample size was that some of the non-active members and active members who did not attend weekly tutoring were difficult to contact by phone because many of the caregivers did not return or answer the multiple phone calls of the researcher, or their phone was disconnected. Other times, caregivers either cancelled appointments or were not home when the researcher arrived. Due to these reasons, there were fewer participants than intended and significantly less non-active members than was intended to participate in the study. In addition, the attrition rate between the first component and the second component was 50% for the active members and 92% for the non-active members with the addition of six new participants. Due to the high attrition rate of participants, the researcher was not able to acquire a complete set of data for each family. One possible reason is that second stage was located in a specified time and place while the first stage was held at a flexible time at the caregivers home or location of choice. Therefore, the participants may have been willing to have a person come to their home or to meet in a nearby location but may not have been willing or able to drive their children across town to the study. These difficulties encountered by the researcher in trying to contact the non-active and less active members are likely similar to the difficulties that the program director encounters when she tries to inform these families of events. The small sample size of the non-active members indicates a need for further research with non-active members to learn what aspects would facilitate their participation in a support group.

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113 Age distribution in the sample The variability of ages in the sample was a limitation. The ages of the children ranged from 5 to 12 years. Each child was at a different developmental and cognitive level, which could have influenced the outcomes from the knowledge of SCD survey and the DSCDAL survey. It was hypothesized that children at different ages would hold different levels of knowledge about SCD; however, there was not a significant correlation between grade and total survey score. Therefore, grade was not believed to influence the results from this section. Another limitation was that the focus groups were not comprised of children of a similar age and gender. While an attempt was made to group older and younger children together in the groups, several caregivers cancelled and changed the date and time of their groups. Therefore, the children got switched from a younger to an older group or vice versa. If possible, it is recommended for future research to create groups with a similar age and gender to compare these variables. Definition of active and non-active members The definition for active members did not include degrees or frequency of attendance. Each participant started the program at a different time and participated in different amount of events; therefore, each participant has had a different experience in the group. For this reason, an analysis was conducted to see if frequency of participation was correlated with the scores on the survey of knowledge of SCD or on the DSCDAL. Neither analysis was significant, indicating that the scores did not increase or decrease significantly with frequency of attendance. Therefore, the criteria was deemed appropriate for this study.

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114 Lack of Pre-Test Data No pre-test data were available for the active members prior to entering the HTI program. Due to the naturalistic setting, the support group had not collected data on the children prior to this study. Therefore, it was impossible to compare the impact of the support group on the children over time. Instead, the study was restricted to a comparison of the two groups who either did or did not participate. Therefore, the results could not indicate whether the data obtained were a result of participation in the intervention or were a result of the characteristics of the groups. Instrumentation Two of the instruments (Survey of Knowledge of SCD and DSCDAL) were not standardized. The instruments were designed for the specific purposes of this study, and could not be compared with samples of children in other locations thus limiting the generalizability of these instruments to this sample. The use of these instruments in this study can, therefore, be considered to be a pilot test for the instruments, and they can be used in future research. Future Research The results of this study have provided data to develop effective interventions for children and families affected by SCD. However, the limitations from this study need to be addressed in future research studies to answer new research questions about SCD that have been generated from this study. Future research should use a larger and more accessible population of children and families affected by SCD. The population should be large enough to group children by age. The different groups of age and gender would allow the researcher to explore differences in scores between age groups and gender in

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115 the focus group data to provide an understanding about how SCD affects boys and girls differently at each stage of their lives. Future research should also be conducted using the instruments, the Knowledge of SCD Survey and the DSCDAL, with a larger sample. This study can be thought of as a pilot study for the instruments, and they should be used in future research with a larger population. Before these instruments are used, there should be some changes made to the wording in some sections. In the introduction to the Knowledge of SCD Survey, the instructions inform the children to see if they can tell the difference between truths and myths. However, many of the children used their own experience to answer the questions. The wording should therefore be changed to Think of your experience with SCD, the experience of everyone else you know who has SCD, and everything you know about SCD. Use this information to answer the following question. If instructed to think more broadly about the disease, the children may be less likely to rely solely on their own experience. Despite this limitation, the information can therefore be used as a way to assess what symptoms the participants have experienced and which PCMT and treatments they have used. The tool can be useful in this way and is less intrusive than directly asking if they have experienced the symptoms. Another change that would need to be made to the instruments before using them in future research is the scoring for the DSCDAL. In this study, the child and caregiver version of the DSDCDAL had different total possible points. This was because the caregiver DSCDAL was derived from an instrument developed by Telfair (1999), and the child instrument was a modified version of the instrument. The caregiver version had the item of going to religious events in both the family and child section. This item was removed from child section on the child

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116 version because it was repetitive and may have confused the children. Therefore, for future use of the instrument, the item of going to religious events also should be removed from the child component of the caregiver version to make the total number of possible points the same for both versions of the instruments. More research also is needed to understand the characteristics of non-active members and to understand the reasons why they do not participate. There could be interview questions to ask the non-active members over the phone about why they chose not to participate. This would eliminate the need for them to travel or take a large amount of time out of their schedule to participate. Gaining access to this population is important to learn better ways to recruit and retain participants in a support group. One way to do this would be to conduct the study in a city that has both a SCD clinic where the researcher could gain easier access the participants. Finally, anecdotal data from the caregivers in this study suggested that the caregivers would like to have a support group for themselves. A support group should therefore be developed, and data should be collected to determine its impact and effectiveness. There is limited literature on support groups for caregivers of children with SCD, and the formation and data collection of a support group would contribute to the literature. Implications for School Psychologists This study has several implications, which are intended to improve the medical, academic/educational, and psychosocial support for children and families affected by SCD and to improve the training of school and hospital personnel on the prevention and treatment of SCD. The implications include the improvement and need for educational

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117 and psychosocial support for children, psychosocial support for caregivers, and training for school and hospital personnel. Educational support for children with SCD This study provided information for the program director of the Hop To It program about the childrens knowledge of symptoms, pain crisis management, and treatments for SCD. The active and non-active children were able to correctly identify the majority of the symptoms, PCMT, and treatments as true but were less able to correctly identify the myths about the disease as false. Therefore, future education sessions should clarify myths about SCD. In addition, education sessions should incorporate the topics that the children requested more information about, such as why their eyes turn yellow, why their heart is bigger, and what happens in their kidneys that causes them to go to the bathroom so frequently. These suggestions will help the child become more educated about his/her own disease. This is important because the more educated an individual is about their own disease, the more active one will be on a health care team and the better he/she will be to provide self-care (Logan, Radcliffe, Smith, & Whitley, 2002). Psychosocial support for children with SCD Another implication of this study is the need to provide psychosocial support to children with SCD. One theme that emerged from the focus groups was that children with SCD think that other children think that they are contagious. Therefore, this notion should be addressed in a support group for the children so they can practice responding to the comments and inaccurate statements that their peers may make. This may increase their satisfaction with the group as Telfair and Gardner (1999) found that patients were most satisfied with their support group when it provided opportunities to learn how to

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118 solve problems. The participants liked the groups best when they dealt with "real life issues" such as explaining condition to others, transition to adult care, and negotiating the health care system. Therefore, this is an important component to include in support groups. Psychosocial support for caregivers of children with SCD Another implication of this study is the need for a support group for the caregivers and the siblings of children with SCD. Anecdotal data collected from the caregivers indicated that they liked talking about SCD and wanted to form a group for caregivers to offer support to each other. They created an attendance sheet to contact each other in the future, and two caregivers mentioned that they enjoyed having the researchers come to their homes because the researchers asked them questions and showed concern. The results of the DSCDAL provided data on the areas that were the most problematic for the caregivers. The areas of having enough money and caregivers missing work were the top two highest rated items by the caregivers. These topics could be incorporated in the support group by offering caregivers suggestions for financial management and planning. Additionally, the support group for the caregivers could include an educational component to promote the prevention and reduction of debilitating symptoms in children with SCD. Education for school and hospital personnel The final implication is to educate school personnel, including the general education teacher, the physical education teacher, and the nurse, on the implications and management of SCD. They should all be aware of the warning signs of a pain crisis and what to do when the child is experiencing these warning signs. The PE teacher should be

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119 informed that a child with SCD needs to rest or to drink water during strenuous exercise. The childs class also should be educated on the facts and myths about SCD and the reason why the child frequently misses school. Finally, there must be a good system of communication between the childs family and school to facilitate transitions between school and the hospital. This education will create a more supportive environment for the child at school so the child can feel more comfortable sharing his/her experiences with others. Conclusion In conclusion, this study has provided valuable information about the difference in the knowledge of SCD, beliefs about how SCD affects ones life, and the behavioral and emotional functioning of those who are active in the Hop To It program and those who are not. There was not a significant difference between the active and non-active members on the instruments; however, there was a difference between the groups in their ability to express or explain the symptoms and the impact of SCD on their life. Despite these differences, SCD seems to have an impact on the lives of both active and non-active children and caregivers. These data have several implications but must be interpreted with caution due the limitations in the methodology of the study. The implications from this study are to continue providing interventions, such as educational and psychosocial support for children and caregivers and educational training for school and hospital personnel. Interventions, such as the Hop To It program, that already provide these services should be continued as they provide a positive, supportive environment for children and families who experience the negative impact of SCD.

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120 References Achenbach, T. M., & Edelbrock, C. A. (1983). Manual for the Child Behavior Checklist and Revised Child Behavioral Profile. Burlington: University of Vermont, Department of Psychiatry. Achenbach, T. M., & Edelbrock, C. S. (1991). Integrative Guide for the 1991 CBCL/ 1418, YSR, and TRF Profiles. Burlington: University of Vermont, Department of Psychiatry. Adams, R. J., Ohene-Frempong, K., & Wang, W. (2001). Sickle cell and the brain. Hematology: American Society of Hematology. Education Program 31-46. Barbarin, O. A., Whitten, C. F., & Bond, S. M. (1994). Estimating rates of psychosocial problems in urban and poor children with sickle cell anemia. Health and Social Work, 19, 112-119. Barbarin, O. A., Whitten, C. F., & Bond, S. M., & Conner-Whitten, R. (1999). The social and cultural context of coping with sickle cell disease: III. Stress, coping tasks, family functioning, and children's adjustment. Journal of Black Psychology, 25 356-377. Baskin, M. L., Collins, M. H., Brown, F., Griffith, J., Samuels, D., Moody, A., Thompson, M. P., Eckman, J., Kaslow N. J. (1998). Psychosocial considerations in sickle cell disease (SCD): The transition from adolescence to young adulthood. Journal of Clinical Psychology in Medical Settings, 5, 315-341.

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121 Bonner, M. J., Gustafson, K. E., Schumacher, E., Thompson, Jr., R. J. (1999). The impact of sickle cell disease on cognitive functioning and learning. School Psychology Review, 28, 182-193. Brown, R. T., Armstrong, F. A., & Eckman, J. R. (1993). Neurocognitive aspects of pediatric SCD. Journal of Learning Disabilities, 26, 33-45. Burlew, K., Telfair, J., Colangelo, L., & Wright, E. C. (2000 ) Factors that influence adolescent adaptation to SCD. Journal of Pediatric Psychology, 25, 287-299. Casey, R. Brown, R. T., and Bakeman, R. (2000). Predicting Adjustment in Children and Adolescents with SCD: A Test of the Risk-Resistance-Adaptation Model. Rehabilitation Psychology, 45 155-178. Chapar, G. N., Doctors, A., Radel, E., & Coupey, S. .M. (1986, May). Minimal neurologic deficits in adolescents with sickle cell disease. Paper presented at the annual meeting of the Society for Developmental and Behavioral Pediatrics, Boston. Charache, S., Lubin, B., & Reid, C. D. (1989). Management and therapy of sickle cell disease (NIH Publication No.89-217). Washington, DC : National Institutes of Health. Charache, S., Terrin, M.L., Moore, R. D., Dover, G. J., Barton, F. B., Eckert, S. V., McMahon, R. D., & Bonds, D. R. (1995) Effect of hydroxyurea on the frequency of painful crises in sickle cell anemia. Investigators of the Multicenter Study of Hydroxyurea in Sickle Cell Anemia. New England Journal of Medicine 332, 1317-1322.

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122 Chodorkoff, J., & Whitten, C. F. (1963). Intellectual status of children with sickle cell anemia. The Journal of Pediatrics, 63, 29-35. Collins, M., Kaslow, N., Doepke, K., Eckman, J., & Johnson, M. (1998). Psychosocial Interventions for Children and Adolescents with sickle cell disease (SCD). Journal of Black Psychology, 24, 432-454. Dunst, C. J., & Leet, H. E. (1988). Measuring the adequacy of resources in households with young children. In C.J. Dunst, C.M. Trivette, & A.G. Deal (Eds.), Enabling and empowering families (pp. 111-124). Cambridge: Brookline Books. Dunst, C. J., Jenkins, V., & Trivette, C. M. (1984). Family Support Scale: Reliability and validity. Journal of Individual, Family, and Community Wellness, 1, 45-52. Eaton, M. L., Haye, J. S., Armstrong, F. D., Pegelow, C. H., & Thomas, M. (1995). Hospitalizations for painful episodes: association with school absenteeism and academic performance in children and adolescents with sickle cell anemia. Issues in Comprehensive Pediatric Nursing, 18, 1-9. Epstein, M. H., & Sharma, J. M., (1998). Behavior and Emotional Rating Scale: A strength-based approach to assessment Austin, TX: PRO-ED. Fowler, M. G., Whitt, J. K., Nash, K. B., Atkinson, S., Wells, R. J., & McMillan, C. (1988). Neuropsychological and academic functioning of children with sickle cell anemia. Developmental and Behavioral Pediatrics, 9, 213-230. Gall, M. D., Borg, W. R., & Gall, J. P. (1996). Educational Research: An introduction, 6 th edition. White Plains, NY: Longman Publishers USA. Gentry, B. F., Varlik, L., and Dancer, J. (1997) Childrens perceptions of psychosocial factors related to SCD. Perceptual and Motor Skills, 85 1409-1410

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123 Gil, K. M. Williams, D. A., Thompson, R. J., & Kinney, T. R. (1991). SCD in children and adolescents The relation of parent and child coping strategies to adjustment. Journal of Pediatric Psychology, 16, 643-663. Golden, Charles J.; Purisch, Arnold D. & Hammeke Thomas A. (1991). Luria-Nebraska Neuropsychological Battery: Forms I and II. Western Psychological Services, Los Angles, CA. Graumlich, S. E., Powers, S. W., Byars, K. C., Schwarber, L. A., Mitchell, M. J., Kalinyak, K. A. (2002). Multidimensional Assessment of Pain in Pediatric Sickle Cell Disease. Journal of Pediatric Psychology, 26, 203-214. Halsey, C., Roberts, I. A. G. (2003). Review: The role of hydroxyurea in sickle cell disease. British Journal of Haematology, 120, 177-186. Hariman, L. M., Griffith, E. R. Hurtig, A. L., Keehn, M. T. (1991). Functional outcomes of children with sickle-cell disease affected by stroke. Archives of Physical Medication and Rehabilitation, 72, 498-502 Heary, C .M. & Hennessy, E. (2002) The Use of Focus Group Interviews in Pediatric Health Care Research. Journal of Pediatric Psychology, 27, 47-57. Hurtig, A., & Viera, A. (1986). Sickle cell disease: Psychological and psychosocial issues. Urbana: University of Illinois Press. Ievers, C. E., Brown, R. T., Lambert, R. G., Hsu, L., & Eckman, J. R. (1998). Family functioning and social support in the adaptation of caregivers of children with sickle cell syndromes. Journal of Pediatric Psychology, 23, 377-388.

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124 Kaslow, N. J., Collins, M. H., Rashid, F. L., Baskin, M. L., Griffith, J. R., Hollins, L., Eckman, J. E. (2000). The efficacy of a pilot family psychoeducational intervention for pediatric SCD (SCD). Families, Systems, & Health, 18, 381-404. Kral, M. C., Brown, R. T., & Hynd, G. W. (2001). Neuropsychological aspects of pediatric sickle cell disease. Neuropsychology Review, 11, 179-196. Lemanek, K. L, Buckloh, L. M., Woods, G., & Butler, R. (1995). Diseases of the circulatory system: SCD and hemophilia. In M. C. Roberts (Ed.) Handbook of pediatric psychology (2nd ed.). The Guilford Press, New York, NY, pp. 286-309. Lemanek, K. L., Moore, S. L., Gresham, F. M., Williamson, D. A., & Kelley, M. L. (1986). Psychological adjustment of children with sickle cell anemia. Journal of Pediatric Psychology, 11, 397-410. National Institute of Health, The management of sickle cell disease, June, 2002. (NIH Publication No. 02-2117) 4 th edition. http://www.nhlbi.nih.gov/health/prof/blood/sickle/sc_mngt.pdf. National Institute of Health. Sickle Cell Anemia November, 1996. (NIH Publication No. 96-4057) Silver Spring, MD: Author. Noll, R. B., Swiecki, E., Garstein, M., & Vannatta, K. (1994). Parental distress, family conflict, and role of social support for caregivers with or without a child with sickle cell disease. Family Systems Medicine, 12, 281-294. Olson, D. H., McCubbin, H. L., Barnes, H., Larsen, A., Muxen, M., & Wilson, M. (Eds.). (1992). Family Inventories: Inventories Used in a National Survey of Families Across the Family Life Cycle. St. Paul, MN: Family Social Science.

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125 Olson, D. H., Russell, C., & Sprenkle, D. (1983). Circumplex model of marital and family systems: VI. Theoretical update. Family Process, 22, 69-83. Pharr, O., & Barbarin, O. (1981). Social suspension: A problem of person-environment fit. In O. Barbarin, P. Good, O. Pharr, & Siskind (Eds.), Institutional racism and community competence (DHHS-ADM 81, pp. 76-90). Washington, DC: U.S. Government Printing Office. Puig-Antich, J., & Chambers, W. (1978). The schedule for affective disorders and schizophrenia for school-age children (Kiddie SADS). New York: New York State Psychiatric Institute. Rosenthal, R. & Rosnow, R. L. (1975). The volunteer subject. New York: Wiley. Swift, A. V., Cohen, M.J., Hynd, G. W., Wisenbaker, J. M., McKie, K .M., Makari, G., & McKie, V. (1989) Neuropsychological impairment in children with sickle cell anemia. Pediatrics, 84, 1077-1085. Telfair, J. (1994). Factors in the long term adjustment of children and adolescents with SCD: Conceptualizations and review of the literature. Journal of Health and Social Policy, 5. 69-96. Telfair, J. Gardner, M. M. (1999). Adolescents with SCD: Determinants of support groups attendance and satisfaction. Health & Social Work, 25, 43-50. Thomas, V. J. & Taylor, L. M. (2002). The psychosocial experience of people with sickle cell disease and its impact on quality of life: Qualitative findings from focus groups. British Journal of Health Psychology, 7 345-363.

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126 Thompson, R. J. Armstrong, D. F., Link, C. L, Pegelow, 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 With Sickle Cell Disease: A Report From the Cooperative Study of Sickle Cell Disease. Journal of Pediatric Psychology, 28, 59-65. U.S. Department of Health and Human Services. (1993). Sickle cell disease: Screening, diagnosis, management and counseling in newborns and infants. (AHCPR Publication No. 93-0562). Rockville, MD: Author Wallander, J., Varni, J., Babani, L., Banis, H., & Wilcox, K. (1989). Family resources as resistance factors for psychological maladjustment in chronically ill and handicapped children. Journal of Pediatric Psychology, 14, 157-173. Walters, M. C., Patience, M., Leisenring, W., Eckman, J. R., Scott, J. P., Mentzer, W. C., Davies, S. C., Ohene-Frempong, K., Bernaudin, F., Matthews, D. C., Storb, R., Sullivan, K. M. (1996). Bone marrow transplantation for sickle cell disease. New England Journal of Medicine, 335, 369-376. Wasserman, A. L., Wilimas, J. A., Fairclough, D. L., Mulhern, R. K., & Wang, W. (1991). Subtle neuropsychological deficits in children with sickle cell disease. The American Journal of Pediatric Hematology/ Oncology, 13, 14-20.

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127 Appendices

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128 Appendix A: Survey of Childrens Knowledge of Sickle Cell Disease: Symptoms, Pain Crisis Management, and Treatment Medical Professional Version I am working with USF and FMHI to better understand children and families with Sickle Cell Disease (SCD). I am developing a survey to measure the knowledge that children have of SCD. Please help with this study by serving as a "content expert" reviewer and: 1) read each statement and judge the importance of using it in the survey 2) add additional comments about the wording of the statement 3) suggest additional items that you feel are important The left side of the page (gray) is written the way it will be presented to the child. An examiner will read each item to the child. The directions for you are presented on the right side of the page (white) with the rating scale for each item and space for your comments. Thanks for your time!

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129 Appendix A: Survey of Childrens Knowledge of Sickle Cell Disease: Symptoms, Pain Crisis Management, and Treatment (Continued) Child Directions: For this set of questions, see if you can tell the difference between things that are true and things that are not true about sickle cell. Mark NO if the statement is not true Mark SOMETIMES if the statement is true sometimes or occasionally. Mark YES if the statement is always true. Evaluator Directions: Read each item in the left column and judge the importance of the item for use in this survey for children with SCD in the program. Please use the following rating scale: 1. Not important and should not be included. 2. Somewhat important, but unnecessary to this study 3. Important and include if you can 4. Extremely important and must be included. For the actual symptoms, pain crisis management, and treatments, please rate the importance of the children knowing that these are true features of the disease. For the myth items (non-truths), judge the importance for children with sickle cell disease to know they are myths.

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130 Appendix A: Survey of Childrens Knowledge of Sickle Cell Disease: Symptoms, Pain Crisis Management, and Treatment (Continued) A. Sickle Cell Symptoms Please write comments and suggestions here for each item. Symptoms (Children should know these are true) No Sometimes Yes PLEASE CIRCLE RATING OF IMPORTANCE 1. Not important and should not be included. 2. Somewhat important, but unnecessary to this study 3. Important and include if you can 4. Extremely important and must be included. Children with sickle cell disease have the following symptoms: 1 Pain X 1 2 3 4 Children with sickle cell disease have the following symptoms: No Sometimes Yes PLEASE CIRCLE RATING OF IMPORTANCE 1. Not important and should not be included. 2. Somewhat important, but unnecessary to this study 3. Important and include if you can 4. Extremely important and must be included. 2. Hands or feet getting puffy/ swollen X X 1 2 3 4 3. Getting out of breath easily X 1 2 3 4 4. Feeling weak or tired X X 1 2 3 4 5. Skin or eyes turning yellow X X 1 2 3 4

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131 Appendix A: Survey of Childrens Knowledge of Sickle Cell Disease: Symptoms, Pain Crisis Management, and Treatment (Continued) 6. Smaller than other kids X X 1 2 3 4 7. Getting sick a lot (Infections) X X 1 2 3 4 8. Stroke X X 1 2 3 4 9. Pneumonia X X 1 2 3 4 10. Bleeding in lower leg (ulcers) X X 1 2 3 4 11. Vomiting/ throwing up X X 1 2 3 4 12. Problems walking or running X X 1 2 3 4 Not-Symptoms (Children should know these are not true) PLEASE CIRCLE RATING OF IMPORTANCE 1. Not important and should not be included. 2. Somewhat important, but unnecessary to this study 3. Important and include if you can 4. Extremely important and must be included. 1. Hard time sitting still X 1 2 3 4 2. Bleeds a lot X 1 2 3 4 3. Gets black and blue (bruises) easily X 1 2 3 4 4. Skin gets dry or peels X 1 2 3 4 5. Very good at sports X 1 2 3 4

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132 Appendix A: Survey of Childrens Knowledge of Sickle Cell Disease: Symptoms, Pain Crisis Management, and Treatment (Continued) 6. Cheeks get red and flushed X 1 2 3 4 7. Can't stop coughing (bronchitis) X 1 2 3 4 8. Very strong/ large for age group X 1 2 3 4 9. Left-handed X 1 2 3 4 10. Ear Problems X 1 2 3 4 11. Does not feel pain X 1 2 3 4 Any suggestions. . B. Pain Crisis Management Please write comments and suggestions here for each item. Some ways that people help to prevent or reduce pain (make pain go away) during a pain crisis include the following: No Sometimes Yes 1. Not important and should not be included. 2. Somewhat important, but unnecessary to this study 3. Important and include if you can 4. Extremely important and must be included. Treatments (these are true) PLEASE CIRCLE RATING OF IMPORTANCE 1. Don't go in places that are very hot or very cold X 1 2 3 4

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133 Appendix A: Survey of Childrens Knowledge of Sickle Cell Disease: Symptoms, Pain Crisis Management, and Treatment (Continued) 2. Dont do a lot of running around and exercise X 1 2 3 4 3. Dont get very upset about things X 1 2 3 4 4. Thinking about other nicer things, imagining other places X 1 2 3 4 5. Thinking good thoughts (positive thinking) X 1 2 3 4 6. Getting lots of rest X 1 2 3 4 7. Taking medicine for pain X 1 2 3 4 9. Drinking a lot of fluids like water X 1 2 3 4 10. Relaxation exercises (breathing, etc.) X 1 2 3 4 Some ways that people help to prevent or reduce pain (make pain go away) during a pain crisis include the following: No Sometimes Yes PLEASE CIRCLE RATING OF IMPORTANCE 1. Not important and should not be included. 2. Somewhat important, but unnecessary to this study 3. Important and include if you can 4. Extremely important and must be included. 11. Taking a whirlpool or warm bath X 1 2 3 4 12. Getting a massage X 1 2 3 4 13. Switching off Tylenol and Ibuprofen X 1 2 3 4

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134 Appendix A: Survey of Childrens Knowledge of Sickle Cell Disease: Symptoms, Pain Crisis Management, and Treatment (Continued) Not management (Children should know these are not true) 1. Dunking your whole body in cold water X 1 2 3 4 2. Exercisingrunning around a lot X 1 2 3 4 3. Taking vitamins X 1 2 3 4 4. Taking cold medicine (Antihistamines) X 1 2 3 4 5. Poking or pushing area of pain X 1 2 3 4 6. Using an ice pack X 1 2 3 4 7. Lifting up the part of your body that hurts X 1 2 3 4 8. Eating a lot of food/ calories X 1 2 3 4 9. Using a heat lamp X 1 2 3 4 Some ways that people help to prevent or reduce pain (make pain go away) during a pain crisis include the following: No Somet imes Yes 1. Not important and should not be included. 2. Somewhat important, but unnecessary to this study 3. Important and include if you can 4. Extremely important and must be included.

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135 Appendix A: Survey of Childrens Knowledge of Sickle Cell Disease: Symptoms, Pain Crisis Management, and Treatment (Continued) 9. Tightening or squeezing all muscles X 1 2 3 4 10. Moving body part that is in pain X C. Treatments for Sickle Cell Disease Please write comments and suggestions here for each item. Doctors use the following treatments to help people with Sickle Cell Disease feel better: No Sometimes Yes PLEASE CIRCLE RATING OF IMPORTANCE 1. Not important and should not be included. 2. Somewhat important, but unnecessary to this study 3. Important and include if you can 4. Extremely important and must be included. Treatments (children should know that these are true) 1. Getting medication to stop pain (Pain-killers) X 1 2 3 4 2. Taking fluids in your veins from an IV tube X 1 2 3 4 3. Getting blood transfusions (more blood) X X 1 2 3 4 4. Giving the medication Penicillin to babies X 1 2 3 4 5. Getting hydroxyureaAnticancer drug X 1 2 3 4 6. Taking an inhaler for chest and back pain X X 1 2 3 4

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136 Appendix A: Survey of Childrens Knowledge of Sickle Cell Disease: Symptoms, Pain Crisis Management, and Treatment (Continued) 7. Getting surgery for eye problems (laser) X X 1 2 3 4 8. Getting surgery for liver problems X X 1 2 3 4 9. Getting bone marrow transplant X X 1 2 3 4 10. Eating a healthy diet X 1 2 3 4 11. Drinking plenty of fluids X 1 2 3 4 12. Getting surgery on hip to walk better X X Doctors use the following treatments to help people with sickle cell disease feel better: No Sometimes Yes Not treatments (children should know that these are not true) CIRCLE RATING OF IMPORTANCE 1. Not important and should not be included. 2. Somewhat important, but unnecessary to this study 3. Important and include if you can 4. Extremely important and must be included. 1. Getting surgery to remove painful areas X 2. Eating lots of sugar X 1 2 3 4

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137 Appendix A: Survey of Childrens Knowledge of Sickle Cell Disease: Symptoms, Pain Crisis Management, and Treatment (Continued) 3. Eating a diet without wheat or bread (wheat free) X 1 2 3 4 4. Doing art (art therapy) X 1 2 3 4 5. Doing chemotherapy X 1 2 3 4 6. Eating extra Iron X 1 2 3 4 7. Getting x-rays X 1 2 3 4 8. Getting bone surgery X 1 2 3 4 9. Wearing sunscreen X 1 2 3 4 10. Taking a shower/ bath every day X 1 2 3 4 11. Taking the drug insulin X 1 2 3 4 12. Chewing medicated gum X 1 2 3 4 Any suggestions. .

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138 Symptoms Item MP a HTI b All Item MP a HTI b All Pain 4.00 4.00 4.00 Hard time sitting still 2.33 1.00 1.67 Hands or feet getting puffy/swollen 4.00 4.00 4.00 Bleeds a lot 2.33 1.00 1.67 Feeling weak or tired 3.67 4.00 3.84 Gets black and blue easily 2.33 1.00 1.67 Skin or eyes turning yellow 4.00 3.00 3.50 Skin gets dry or peels 2.33 1.00 1.67 Stroke 3.67 3.33 3.50 Can't stop coughing 2.33 1.00 1.67 Getting out of breath easily 3.50 3.30 3.40 Very good at sports 1.67 1.00 1.34 Getting sick a lot (infections) 3.33 3.33 3.33 Very strong/large for age 1.67 1.00 1.34 Problems walking or running 3.00 3.33 3.17 Cheeks get read and flushed 1.33 1.00 1.17 Pneumonia 2.67 3.33 3.00 Left-handed 1.00 1.00 1.00 Bleeding in lower leg 3.00 3.00 3.00 Ear problems 1.00 1.00 1.00 Vomitting 2.67 3.00 2.84 Does not feel pain 1.00 1.00 1.00 Smaller than other kids 2.33 3.33 2.83 Note. NA indicates that none of the reviewers rated that item a=MP=Medical Professionals b=HTI=Hop To It Staff Appendix B: Expert Panel Results for Knowledge of SCD Survey Average Scores for Not Symptoms Average Scores for Actual Symptom Table B1

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139 Appendix B: Expert Panel Results for Knowledge of SCD Survey (Continued) Table B2 Pain Crisis Management Techniques (PCMT) Average Scores for PCMT Average Scores for Not PCMT Item MP a HTI b All Item MP a HTI b All Taking medicine for pain 4.00 4.00 4.00 Taking vitamins 3.33 3.00 3.17 Drinking a lot of fluids like water 4.00 4.00 4.00 Moving body part that is in pain 3.00 NA 3.00 Don't go in places that are very hot/cold 3.67 3.67 3.67 Using an ice pack 4.00 1.00 2.50 Getting lots of rest 3.33 3.50 3.42 Dunking your whole body in cold water 3.67 1.00 2.33 Switching off Tylenol and Ibuprofen 3.50 2.67 3.08 Using a heat lamp 3.50 1.00 2.25 Thinking or imagining about other nicer things, 3.00 3.00 3.00 Exercisingrunning around a lot 3.33 1.00 2.17 Thinking good thoughts (positive thinking) 3.00 3.00 3.00 Lifting up the part of your body that hurts 3.00 1.00 2.00 Getting a massage 3.33 2.33 2.83 Tightening or squeezing all muscles 3.00 1.00 2.00 Taking a whirlpool or warm bath 2.67 2.67 2.67 Taking cold medicine (Antihistamines) 2.50 1.00 1.75 Relaxation exercises (breathing, etc.) 2.17 3.00 2.58 Poking or pushing area of pain 2.50 1.00 1.75 Don't do a lot of running around/exercise 3.00 2.00 2.50 Eating a lot of food/ calories 2.50 1.00 1.75 Don't get very upset about things 2.00 2.50 2.25 Note NA indicates that none of the reviewers rated that item. The highest possible average rating is a 4. a=MP=Medical Professionals b=HTI=Hop To It Staff

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140 Treatments Item MP a HTI b All Item MP a HTI b All Getting medication to stop pain (Pain4.00 4.00 4.00 Getting surgery to remove 3.00 1.00 2.00 Drinking plenty of fluids 4.00 4.00 4.00 Eating lots of sugar 3.00 1.00 2.00 Taking fluids in your veins from an IV 3.67 4.00 3.83 Eating a diet wheat free diet 3.50 1.00 2.25 Getting blood transfusions (more blood) 2.33 4.00 3.17 Doing art (art therapy) 2.50 1.00 1.75 Eating a healthy diet 3.00 3.33 3.17 Doing chemotherapy 2.50 1.50 2.00 Giving the medication Penicillin to babies 2.50 2.67 2.58 Eating extra Iron 2.50 2.00 2.25 Getting hydroxyureaAnticancer drug 2.67 1.00 1.83 Getting x-rays 3.00 1.00 2.00 Taking an inhaler for chest and back pain 2.50 1.00 1.75 Getting bone surgery 2.50 1.00 1.75 Getting bone marrow transplant 1.50 2.00 1.75 Wearing sunscreen 2.50 2.00 2.25 Getting surgery on hip to walk better 2.00 1.50 1.75 Taking a shower/ bath every 2.50 1.00 1.75 Getting surgery for eye problems (laser) 2.00 1.33 1.67 Taking insulin 3.00 1.00 2.00 Getting surgery for liver problems 1.50 1.33 1.42 Chewing medicated gum 3.50 1.00 2.25 Note. NA indicates that none of the reviewers rated that item. The highest possible average rating is a 4. a=MP=Medical Professionals b=HTI=Hop To It Staff Appendix B: Expert Panel Results for Knowledge of SCD Survey (Continued) Average Scores for Not Treatments Average Scores for Actual Treatments Table B3

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141 Appendix C: Answer Key for Knowledge of SCD Survey Directions: For this set of questions, see if you can tell the difference between facts and myths about sickle cell. Mark NO if the statement is not true Mark SOMETIMES if the statement is true sometimes or occasionally. Mark YES if the statement is always true A. Sickle Cell Symptoms Children with sickle cell disease have the following symptoms : No Sometimes Yes 1. Pain X X 2. Runny nose X 3. Cant stop coughing X 4. Restless (Hard time sitting still) X 5. Skin or eyes turning yellow X X 6. Feeling weak or tired X X 7. Cant pay attention in school X 8. Getting out of breath easily X X 9. Trouble getting up in the morning X 10. Hands or feet getting puffy/ swollen X X

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142 Appendix C: Answer Key for Knowledge of SCD Survey (Continued) B. Pain Crisis Management Some ways that children can help to prevent or reduce pain (make pain go away) during a pain crisis include the following: No Sometimes Yes 1. Avoid places that are very hot or very cold X 2. Asking for medicine for pain X 3. Using an ice pack X 4. Using a heat lamp X 5. Telling an adult if you dont feel well or are tired X 6. Dunking your whole body in cold water X 7. Taking cold medicine X 8. Getting lots of rest X 9. Eating a lot of food/ calories X 10. Drinking a lot of fluids like water X

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143 Appendix C: Answer Key for Knowledge of SCD Survey (Continued) C. Treatments for Sickle Cell Disease The following treatments can help people with Sickle Cell Disease feel better or help reduce the symptoms of SCD: No Sometimes Yes 1. Taking medication to stop pain X 2. Eating extra sugar X 3. Getting frequent blood tests to check blood X 4. Getting heart tests X 5. Eating extra salt X 6. Getting surgery to remove painful areas X 7. Drinking extra fluids or water X 8. Taking the drug insulin X 9. Taking tests on your brain X 10. Avoiding sports or exercise X

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144 Appendix D: Degree Sickle Cell Disease Affects Life (DSCDAL)-Caregiver Version Please rate how often you think that the following areas are affected by having a child with Sickle Cell Disease. . never, sometimes, or very often. Never Sometimes Very Often a. money or finances b. job (taking off from work) c. your social activities d. religious activities e. trips and vacations f. everyday tasks (driving, household chores) Please rate how often your child with Sickle Cell Disease has problems in the following areas. . never, sometimes, or very often. Never Sometimes Very Often a. homework b. attendance in school c. grades d. social activities (e.g. going to partieis) e. religious activities f. after-school activities g. physical activities (e.g. walking, bending) h. sports i. everyday tasks (household chores) j. self-care (e.g. bathing, dressing) k. getting along with parents/guardians l. getting along with brothers and sisters m. getting along with friends

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145 Appendix E: Degree Sickle Cell Disease Affects Life (DSCDAL): Child Version A. Nicole likes going to the zoo. Mark one: B. Nicole likes when it is raining. Mark one: The choices are: Not at all A little bit A lot Not at all A little bit A lot Not at all A little bit A lot Lets practice using these choices. Im going to show you some pictures. For each picture, I will read a sentence and then you will put a mark in the box that goes with the picture.

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146 Appendix E: DSCDAL: Child Version (Continued) C. Nicole has trouble with math. Mark one: Now, look at this picture of Nicole and her family. Nicole has Sickle Cell Disease. Think about the ways that Sickle Cell Disease can affect Nicoles life. Not at all A little bit A lot

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147 Appendix E: DSCDAL: Child Version (Continued) 1. How much can Sickle Cell Disease limit/stop her parents or grandparents from doing fun things with others or spending time with friends? Mark one: 2. How much can Sickle Cell Disease limit/stop her parents or grandparents from going to church/religious activities? Mark one: 3. How much can Sickle Cell Disease cause a problem when her family takes trips or vacations? Mark one: Directions: Look at each of these pictures and decide how much Nicoles Sickle Cell Disease affects her parents or grandparents that care for her. Not at all A little bit A lot Not at all A little bit A lot Not at all A little bit A lot

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148 Appendix E: DSCDAL: Child Version (Continued) 4. How much can Sickle Cell Disease cause a problem for her parents or grandparents during every day tasks such as driving, chores in the house, or grocery shopping? Mark one: 5. How much does Sickle Cell Disease cause her parents or grandparents to not have enough money for things they need? Mark one: 5. How much do things related to Nicoles Sickle Cell Disease cause her parents or grandparents to take off time from work? Mark one: Not at all A little bit A lot Not at all A little bit A lot Not at all A little bit A lot

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149 Appendix E: DSCDAL: Child Version (Continued) How can sickle cell disease cause a problem for you? 1. doing homework Mark one: 2. having to stay home from school Mark one: 3. making good grades Mark one: Not at all A little bit A lot Not at all A little bit A lot Not at all A little bit A lot

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150 Appendix E: DSCDAL: Child Version (Continued) 4. spending time with friends (parties, hanging out) Mark one: 5. doing after-school activities (YMCA, boys/girls club) Mark one: 6. moving your body (walking, bending) Mark one: Not at all A little bit A lot Not at all A little bit A lot Not at all A little bit A lot

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151 Appendix E: DSCDAL: Child Version (Continued) 7. playing sports Mark one: 8. doing everyday tasks (household chores) Mark one: 9. bathing, dressing (self-care) Mark one: Not at all A little bit A lot Not at all A little bit A lot Not at all A little bit A lot

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152 Appendix E: DSCDAL: Child Version (Continued) 10. getting along with your parents Mark one: 11. getting along with sisters and brothers Mark one: 12. getting along with friends Mark one: Not at all A little bit A lot Not at all A little bit A lot Not at all A little bit A lot

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153 Appendix F: Recruitment Flyer Get Involved in a Sickle Cell Study Y our support is needed to assist in a study that will improve services for children and families affected by Sickle Cell Dise ase. Purpose: To find out the needs of families To find out the reasons medical and other support services are not used To find out the effects that Sickle Cell Disease has on a childs school pe rformance T h e K a n g a K re w e n e e d s y o u r h e lp . Contacts: Shelley Coleman Phone: 813 367 5437 Marcelle Maylott 813 974 6402 HOP TO IT !! Families will be rewarded for their involvement in the study which includes: an interview, completion of a que s tionnaire, and focus group Sponsored by Childrens Cancer Center University of South Florida Florida Mental Health Institute

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154 Appendix G: Focus Group Questions For both groups: Facilitator: Today, you are going to be the teachers. You are going to teach us all about Sickle Cell Disease (SCD). And what it is like to have this disease. We also want to learn more about what you do at the Hop To It program and what types of things you like to do. Before we begin, lets go around and say our names and what types of thing do you like to do. ( We may also so an icebreaker to make them feel more comfortable). Introduce ourselves. I. Tell me about SCD. Explain what it is. a. What are something that happen to your body because of sickle cell disease (Symptoms)? b. What do you do when you have a pain crisis to feel better (PCMT)? c. What are some things that doctors can do to help SCD? (Treatment) II. In what ways does SCD affect different areas of your life? a. school b. friends c. family d. playing sports/walking or running For the Active Members: III. Tell me about the Hop to It program. What is it like/ a. What do you do there? b. What do you do during tutoring? c. What do you talk about there? IV. What kinds of things do you like about the HTI program? What dont you like about the HTI program? a. How does it help you in school? b. What is your favorite part? V. What else would you like to happen at the HTI program? For the Non-Active Members: III. Tell me about other people you know who have SCD? Kids? Adults? IV. What kinds of things do you talk about when you talk about having SCD? Who do you talk to? a. If no, what kinds of things would you like to talk about? b. Is there anything else you would like to talk to us about SCD?

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155 Appendix H: Content Analysis for Active Members Question: What is SCD? What happens to your body because of SCD? Main themes Physiological functions 40 Pain/hurting 13 Physical problems with body 10 Etiology 2 No problems 2 Sub themes Physiological functions 40 Pain/Hurting 13 Etiology 2 Blood cells 12 Arms 5 Genetic 1 Different shapes 6 Legs 4 From Africa Blood gets stuck 3 Headaches 4 mosquito to About blood 3 Crisis 1 America 1 A disease 4 Back 1 Fainting from too much activity 3 Neck 1 Getting sick 3 Shoulder 1 Heart beats faster 3 Side 1 Using bathroom Brain 1 frequently 2 Everywhere 1 Makes you exhausted 2 Cant move 1

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156 Appendix H: Content Analysis for Active Members (Continued) Dizzy in am/cant walk right 2 Throwing up 2 Physical problems Getting temperatures 2 with body 10 No problems 2 Pneumonia 2 Yellow eyes 4 Doesnt affect me Wheezing 1 Skinny legs/arms 1 much 1 Hurts to breathe 1 Stop teenage Can do anything 1 Trouble breathing 1 growth spurt 1 Coughing 1 Kidneys smaller 1 Dehydrated 1 Heart bigger 1 Heart feels like it will Bones break easily 1 stop 1 Problems with Can kill you 1 body 1

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157 Appendix H: Content Analysis for Active Members (Continued) Question: What happens when you have a pain crisis? What is a pain crisis? Main themes Painful feeling 11 Side effects 5 Sub themes Painful feeling 11 Side effects 5 Head hurts 3 Seizures 1 Pain all over body 2 Get sweaty 1 Legs hurt 1 Asthma attack 1 Uncomfortable 1 Pneumonia 1 Like somebody is Loss of functioning hammering 1 for one hour 1 Like somebody is trying to kill you 1 Needles in the heart 2

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158 Appendix H: Content Analysis for Active Members (Continued) Question: What do you do when you have a crisis? Main themes Take medicine 13 Food/drink 4 Rest 6 Coping strategies 2 Tell someone 5 No help 1 Medical attention 5 Subthemes Take medicine 13 Rest 6 Medical attention 5 General medicine 6 Watch TV 2 Call the doctor 1 Penicillin 2 Read a book 1 Set up appointment Tastes bad/nasty 4 Lay down 1 Call 911 1 Motrin 2 Stay inside from Go to hospital 1 Tylenol codeine 2 hot sun 1 Nurse looks at file 1 Headache medicine 1 Sub question: What Tell someone 5 Food/drink 4 is the medicine for? Tell a nurse 2 Drink a lot of water Helps you 2 School calls mom 2 so veins open up 3 Not sure 1 Tell mom or dad 1 Vegetables 1 Coping strategies 2 Pray to god 1 Start screaming 1

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159 Appendix H: Content Analysis for Active Members (Continued) Question: Have you gone to Question: How long do you the hospital for a pain crisis? stay in the hospital? Yes 6 Days 4 In and out since Dec. 1 Weeks 2 Six times 1 Hours 2 When I was four 1 Long time 1 Yes 1 Month 1 Not for five years 1 One week 1 Not this year 1 Cant remember 4 Question: What treatments do/did you go to the hospital for? Main themes Treat SCD symptoms 12 Wellness/Prevention 8 Non-SCD related 2 Sub themes Treat SCD symptoms 12 Wellness/Prevention 8 Non-SCD related 2 Shots or needles 7 Blood tests 3 Get sick 1 Breathing treatments 2 MRI/Cat scans 2 Bad scrape 1 Sleeping gas 1 X-ray tests 1 Need surgery 1 Six month check 2 Really bad headache 1

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160 Appendix H: Content Analysis for Active Members (Continued) Question: Do you worry about test results while waiting to get them back ? Yeah 7 Pray to not think about it 2 No 1 Neutral 3 Think about it a lot 1 Question: What are some things you do for SCD? Main Themes Prevention 10 Medical Care 10 Preventative medicine 6 Nothing different 2 Sub themes Prevention 10 Medical Care 10 Preventative medicine 9 Avoid extreme Shots/IV 5 Folic acid 3 temperatures 6 Hospitalization 3 Penicillin 2 Eat healthy foods 2 Doctor 2 Medicine before bed or Avoid coughing 1 school 2 Drink water 1 Tylenol 1 Echinacea 1 Nothing different 2 Question: What does your mom tell you to do for or about SCD? Main themes Prevention 11 Knowledge about SCD 3 Can do anything I want 2

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161 Appendix H: Content Analysis for Active Members (Continued) Sub themes Prevention 11 Knowledge about SCD 3 Can do anything I want 2 Drink water 4 Read a manual 1 Can do anything 1 Rest when tired 4 Affects teenage growth I am no different 1 Avoid extreme temp. 1 spurt 1 Take medicine 1 Origin of SCD 1 Dont scream when in pain 1 Question: What are some things your doctor can do to help you? Main themes Medical procedures 8 Provide support 4 Sub themes Medical procedures 8 Provide support 4 Give you medicine 3 Tells mom what to do 1 MRIs/Pictures of heart 3 Tells you to eat healthy 1 Blood pressure 1 Helps a lot 1 Hit on side to clear Can give prize if you go to congestion from pneumonia 1 school all year 1

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162 Appendix H: Content Analysis for Active Members (Continued) Question: What was the hospital like? Main Themes Positive 24 Other kids 10 Nurses 7 Negative 16 Sub themes Positive 24 Negative 16 Treatments 4 Fun/games 12 Bad 9 Hit on side 2 Visitors 4 Bad food 2 Nasty medicine 1 Sleep 1 Missing things 1 Carrying IV to Nurses 7 Getting woken up bathroom 1 Friendly/Helpful 3 Shots 1 Maids come 2 in middle of night 4 Bring ice cream 1 Other kids 10 Ask if need Medicine 1 Talk to other kids 3 Anything 1 Take temperature 1 May be dangerous 7 Breathing Contagious 4 Treatments 1 Have cancer 1 Poke you at 6 am 1 Full of lice 1 Avoid coughing 1 Question: What impact does missing school have? Main themes Some Impact 10 No Impact 5

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163 Appendix H: Content Analysis for Active Members (Continued) Sub themes Some Impact 10 No Impact 5 Missed a lot of instruction 7 Not a lot of work when return 4 Get too much attention 2 No impact because home-schooled 1 Tired 1 Question: What does your teacher do to help you? Main themes Teacher concern 8 Bathroom 7 Sub themes Teacher concern 8 Bathroom 2 Makes me drink water 4 Sometimes doesnt let me go 6 Teacher cares 1 Lets me go when I need 1 Tells PE teacher 1 Calls mom if sick 1 Lets me eat snack early 1 Question: What is PE like? Dont take PE 6 Take PE Sometimes 3 Not a problem 1 Got permission 4 Drink water 1 Everyone stays in Do not change 1 Shade/rest when hot 1 when its hot 1 Need a note 1 Sometimes 1

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164 Appendix H: Content Analysis for Active Members (Continued) Question: Do you do anything differently than your friends when playing sports? Yes 4 No 3 Hard to catch breath 3 Exhausted 1 Question: Who knows that you have SCD? Someone at School 16 Not telling people 11 Friends 10 Family 6 People at HTI 3 Sub themes Someone at School 16 Not telling people 11 Friends 10 Teacher knows 10 Secret 4 Best/closest friends 5 Whole Class 3 No friends know 3 All of them 3 Guidance counselor 1 Some friends dont One friend has SCD 1 PE teacher 1 know 2 Specific friend 1 Nurse 1 No one at school 1 Teacher doesnt know 1 Family 6 People at HTI 3 Miss Shelly 1 Tutor 1 Friends at kanga Krew 1

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165 Appendix H: Content Analysis for Active Members (Continued) Question: How would you tell someone you had SCD? General response 3 Physical Symptoms 2 Just like everyone 1 So they understand 1 Pain 1 I dont know 1 Same thing I told you 1 Get sick a lot 1 Nuisance to tell 1 Tell what it is 1 Question: What do friends/other kids say about SCD? Main Themes Negative Things 21 Try to find out Neutral or Positive 9 where you were 8 Sub themes Negative Things 21 Neutral/Positive 9 Ask where I was 8 Make fun of/call names 11 Know better 3 Ask questions 4 Make fun/mean things 4 They understand 3 Why dont you Would not want to be Protect/help 2 come to the park? 1 friend/hang out 3 Think Im lucky 1 Why wuz you sick? 1 Say uhh 1 Why were you in Call me yellow eyes 1 hospital? 1 Miss Sickle Cell 1 Why you always X. has SCD 1 absent from school?1 Say its contagious 7 Call/come to house 2 Like AIDS 1 Dont wan t them Gossip and tell people 3 to make a big deal 2

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166 Appendix H: Content Analysis for Active Members (Continued) Question: What is the HTI program? Main Themes Who is there 9 Location 2 Mascot 1 Sub Themes Who is there 9 Location 2 Mascot 1 Staff 8 Cypress Center 1 Kangaroo only goes Miss S. is funny Kangaroo Center 1 forward never back 1 and nice 5 Volunteers are nice 2 Everybody is nice 1 For cancer and sickle cell kids 1 Question: Do all the kids have SCD? All have SCD 4 Not sure if all have SCD 2 Question: What do you do at the HTI program? Main themes Trips/Visit places 23 Activities/games 11 Speakers 4 Summer camp 3 Tutoring 3 Store 3

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167 Appendix H: Content Analysis for Active Members (Continued) Sub themes Trips/Visit places 23 Activities/games 11 Speakers 4 Busch Gardens 6 Fun stuff 3 People talk about Disney World 5 Eat/drink 2 their jobs 1 Field trips 4 Games 1 Football players 1 Laser tag 2 Arts and crafts 1 Story tellers 1 Bowling/fishing 2 Tag outside 1 They ask questions Airport thing 2 Talk about things 1 like right now 1 MOSI 1 Bean bag chair 1 Ship with water 1 Moms pick us up 1 Summer camp 3 Tutoring 3 Store 3 In summer 1 Homework 3 Get money to buy Week long 1 stuff 3 Drama camp/perform in big room 1 Question: What do you do during tutoring? Help with homework 6 Academics 4 Helps get homework Learn 1 done early 3 Read 1 Helps if I dont underDo math 1 stand homework 3 FCAT 1

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168 Appendix H: Content Analysis for Active Members (Continued) Question: How does tutoring/HTI help you at school? Improve grades 7 Get money for good grades 3 Think about kanga kash at school 2 Student of month because grades improved 1 Do better in school 1 Question: What do you get at the store? Gifts 8 Bucs shirts 2 Gift cards 2 Computer 2 Nintendo 1 Fun stuff you like 1 Question: What is your favorite part? Games/Activities 9 Store 4 Field trips 3 Tutoring component 2

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169 Appendix H: Content Analysis for Active Members (Continued) Question: What are some things you would like to do there? Main themes Add more activities/ No changes/ go more 13 I dont know 4 Changes to center 3 Sub themes Add more activities/ No changes/ go more 13 I dont know 4 Changes to center 3 More games/fun things 9 I dont know 4 Too many rules 1 Sports 4 Speaker after tutoring 1 Go more 2 More friends to come 1 Question: Do you ever talk about SCD at the HTI program? Yes 7 No 5 Learning activities 4 No 1 We learn what it do 2 We try not to remind ourselves of it 1 Games on computers about SCD 2 Prevention 3 Always have a bottle of water 2 When its hot, theres sun tan 1 Question: Do you like the games about SCD? Yes 3 No/boring 3

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170 Appendix H: Content Analysis for Active Members (Continued) Question: Do they teach about SCD in school? Dont teach 1 In 8 th grade 1 Should teach kids not to pick on us 1 Question: What would you like to know more about SCD? Physical symptoms 5 Clarify myths 3 Etiology 3 If theres a cure 2 Types of SCD 1 More about physical symptoms 5 Clarify myths 3 What SCD does to you 1 One kind of sickle cell anemia Why you get exhausted so fast 1 that turns eyes yellow and one that Why you have to use bathroom doesnt 1 so much 1 If only Mediterranean and Black Why eyes get yellow 1 people can get it 1 Biggest size of heart 1 Some kids dont know whats true 1

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171 Appendix I: Content Analysis for Non-Active Members Question: What is SCD? What happens to your body because of SCD? Physiological 4 No problems 4 Friend has it 3 Affects me sometimes 2 I dont know what it does 3 A friend of mine has it 3 Kind of sickness problem 1 No, not that I can think of. 1 Some kind of disease 1 I have it 2 Never heard of 2 I have it 2 No 1 I havent either; I just guessed. 1 Question: What is a pain crisis? Dont know/ cant remember 6 Painful feeling 5 Had one 4 Had in leg 1 I know. Yeah had a crisis 1 1 Side effects 2 I couldnt walk. 1 Only one time 1 If you stand up, legs are weak 1 Lasted two weeks 1 Fevers 1 Had in forehead 1 Seizures 1 Stomach pains 1

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172 Appendix I: Content Analysis for Non-Active Members (Continued) Question: What did you go to the hospital/doctor for? Non-SCD related 3 SCD related 2 Sick Stomach pains 1 Sore throat Crisis 1 Cold Question: Did you go to the hospital for a pain crisis? Yes 8 One or two times 7 Lots of times 1 Question: What was the hospital like? Positive 1 Gave me medicine Question: What do you do when you have a pain crisis? Mom helps me 2 Nothing I can think of 1 Mom gives me medication 2 Mom takes care of me 1 Question: Does your teacher do anything different in school because of SCD? Nothing different 2

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173 Appendix I: Content Analysis for Non-Active Members (Continued) Question: Do you do anything different for PE? Go to PE sometimes 2 Go to PE 1 Sometimes 1 Not on Monday or Tuesday when they run around 1 Question: Who knows you have SCD? Nobody knows 6 My friends 2 Someone at school 1 Nobody at school 3 Friends 2 Coaches and teachers 1 Friends dont know 1 No one knows 1 Dont want anyone to know 1 Question: What do you say to someone about SCD? Dont want them to know Question: What would you say if you told someone about SCD? I dont know 2 Nothing 1

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174 Appendix I: Content Analysis for Non-Active Members Question: What does your mom say about SCD? Knowledge 2 Preventative 2 Nothing 2 If I get sick, eyes turn Takes me to doctor 1 Nothing 2 yellow 1 Go to doctor if Dad says it can yellow eyes 1 affect eyes 1 Question: What does your doctor do for SCD? Dont go to doctor for SCD Question: Is there anything else you want to know about SCD? No 2 Question: What is the Hop To It Program? Cant remember 6 Never heard of it 3 Report card thing 1 I think I went before 1 Get toys for good I went to the airport on Christmas 1 grades 1 Cant remember if a kangaroo was there 1 I think, I dont remember 1 I forget the names of the people there. 1

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175 Appendix J: Item Analysis of DSCDAL-Child and DSCDAL-Caregiver Children Active Active Ranked Items Avg. Avg. Avg. Caregiver missing work 0.95 0.96 1.25 Trips/vacations 0.80 0.62 0.50 Caregivers doing fun things 0.75 0.38 0.67 Going to religious events 0.65 0.27 0.17 Having enough money 0.60 0.77 1.25 Caregiver's every day tasks 0.25 0.19 0.58 Children Active Active Non-active Item Avg. Avg. Avg. Missing school 0.90 0.62 0.75 Spending time with friends 0.60 0.46 0.17 Doing after-school activities 0.60 0.23 0.25 Sports 0.55 0.73 0.42 Moving body 0.55 0.65 0.50 Homework 0.45 0.62 0.42 Getting good grades 0.40 0.48 0.17 Child every-day tasks 0.20 0.46 0.17 Getting along with siblings 0.20 0.50 0.08 Getting along with friends 0.21 0.15 0.08 Self-care 0.10 0.31 0.17 Getting along with caregiver 0.05 0.19 0.08 Note. *Religious events is not included in the child section of the child component. The average is comprised of the following scores: 0=not at all, 1=a little bit, 2=very much Caregivers Non-Active Caregivers Family Component Child Component

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176 Appendix K: Item Analysis of Behavioral and Emotional Rating (BERS) Scale (BERS) Item M Accepts a hug 2.78 Accepts the closeness and intimacy of others 2.54 Acknowledges painful feelings 2.50 Expresses afection for others 2.50 Shows concern for the feelings of other 2.46 Asks for help 2.40 Discusses problems with others 2.05 Item M Demonstrates a sense of belonging to family 2.78 Maintains positive family relationships 2.75 Trusts a significant person with his or her life 2.73 Interpersonalacts positively with parents 2.70 Participates in family activities 2.68 Interpersonalacts positively with siblings 2.23 Complies with rules at home 2.23 Affective Strength Family

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177 Appendix K: Item Analysis of BERS (Continued) Communicates with parents about behavior at home 2.20 Participates in community activities 2.13 Participates in church activities 2.03 Item M Uses appropriate language 2.75 Expresses remorse for behavior that hurts or upsets others 2.45 Listens to others 2.43 Is kind toward others 2.43 Shares with others 2.30 Respects the rights of others 2.28 Considers consequences of own behavior 2.08 Apologizes to others when wrong 2.08 Accepts responsibility for own actions 2.00 Admits mistakes 2.00 Accepts "no" for an answer 1.90 Reacts to dissapointments in a calm manner 1.88 Loses a game gracefully 1.70 Uses anger management skills 1.65 Accepts criticism 1.65 Interpersonal

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178 Appendix K: Item Analysis of BERS (Continued) Item M Demonstrates age-appropriate hygiene skills 2.75 Smiles often 2.75 Demonstrates a sense of humor 2.70 Is enthusiastic about life 2.58 Is popular with peers 2.53 Enjoys a hobby 2.50 Identifies own feelings 2.50 Identifies personal strengths 2.43 Is self-confident 2.34 Talks about the positive aspects of life 2.10 Requests support from peers and friends 2.00 Intrapersonal

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179 Appendix K: Item Analysis of BERS (Continued) Item M Attends school regularly 2.70 Completes homework regularly 2.30 Computes math problems at or above grade level 2.20 Completes school tasks on time 2.15 Studies for tests 2.10 Reads at or above grade level 2.10 Pays attention in class 2.08 Uses note-taking and listening skills in school 1.95 Completes a task on first request 1.78 Note. N=40. Two sets of data from the active members are missing. 0=not at all like the child, 1=not much like the child, 2=like the child, 3=very much like the child School


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A program evaluation of a support group for children with sickle cell disease
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ABSTRACT: Children with Sickle Cell Disease (SCD) face medical, psychosocial, and cognitive challenges, which may impede their social and academic functioning. These complications can be lessened through the implementation of comprehensive interventions. This study reviews one comprehensive intervention, a support group, for children with SCD and their families, and reviews the challenges faced by the children and family who participate in the support group as well as those who do not participate. The study has a mixed-method design because the families participated in focus groups, and they completed quantitative instruments, including a knowledge survey, a behavior rating scale, and an instrument to measure the degree that SCD affects one's life. Most children rated SCD as affecting their life a little bit and were knowledgeable in SCD. The children who did not participate in the support group reported less symptoms and a smaller impact on their lives than those who did participate. The results from the behavior rating scale did not reveal any significant behavior problems in these children; however, those who did not participate in the support group had higher ratings than those who did. These results imply that individuals with SCD who are less impacted by the disease may be less likely to attend a support group than those who are more impacted. Additionally, a theme analysis from the focus groups revealed key themes, such as keeping SCD a secret, getting made fun of, missing school, missing PE class, hospital visits, and experiences with pain crises. The findings from this study indicate that SCD does impact the life of children with the disease; however, the impact may be unknown to others and may differ among individuals. The results also imply that school personnel and other students in schools must be accurately informed about the manifestations of SCD to best promote healthy physical and psychosocial development in children with SCD. Finally, support groups can help to reduce symptoms and complications related to the disease.
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