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Psychotropic medications commonly used with children have been associated with side effects significant enough to warrant warnings from the Food and Drug Administration. The risks of these side effects are potentially increased in children who are long-term survivors of childhood cancer because of damage to the heart and central nervous system (CNS) due to chemotherapy and radiation therapy. There are few empirical studies addressing whether children treated for cancer have greater exposure to psychotropic medications than the general population, the reasons for use of psychotropic medications in cancer survivors, or whether risks associated with cancer treatment are considered when psychotropic medications are used. The specific aims of this study were: (1) to examine the prevalence of psychotropic medication use among children treated for cancer, (2) to obtain descriptive data regarding variables associated with medication usage, and (3) to develop a model to predict which children are likely to be prescribed psychotropic medication. A cross-sectional sample of 69 children, ages two to 17 years, who were undergoing treatment or had successfully completed treatment for leukemia/lymphoma, central nervous system (CNS) tumors, or other non-CNS related cancers were recruited. Caregivers completed measures of psychosocial functioning, medication use, and developmental history. Medical history was also obtained. Results indicated that 15% of subjects were taking psychotropic medication, specifically stimulants and antidepressants. The Classification and Regression Trees (CART) algorithm was used to develop a predictive model. Results indicated gender, age, and presence of school difficulty explained a total of 46% of the variance in psychotropic medication use in the pediatric cancer population; children treated for cancer who were male, age 10 or older and had reported school difficulty were more likely to be prescribed psychotropic medication. No cancer variables were found to influence psychotropic medication use. Several limitations likely influenced results including limited sample size, inclusion of multiple diseases in the non-CNS involved solid tumor diagnosis group, and recruitment limited to three sites. Results indicate a need for continuous examination of psychotropic medication use and possible side effects in the childhood cancer population.

The main aims of this thesis were to investigate the effect of distraction, midazolam and morphine on fear, distress, and pain during needle procedures, and to longitudinally describe parents’ perceptions of their children’s symptom burden during and after cancer treatment. The design in Study I-III was that of a randomized controlled trial (RCT) conducted in a medical setting; Studies II-III were placebo controlled. Study IV has a longitudinal design, and data were collected at three times during treatment and three times after the end of successful treatment. Participants in Study I were children aged 1 to 7 (n=28), in Study II children aged 1 to 19 (n=50), in Study III children aged 1 to 19 (n=50), and in Study IV parents (n=160) of children aged 1 to 19. Blowing soap bubbles or having a heated pillow reduces children’s fear and distress in connection with needle procedures. Low-dose oral midazolam 0.3mg/kg body weight is effective in reducing fear and distress, especially in younger children. Interestingly, oral morphine at a dose of 0.25mg/kg body weight does not reduce fear, distress or pain. These studies have evaluated interventions that may be of help for the most frightened children during needle procedures. We suggest that the first-line intervention against procedural fear, distress, and/or pain should be standard care (i.e. EMLA) in addition to distraction interventions when needed, and only when this is insufficient to add pharmacological interventions. According to parents, feeling drowsy, pain, and lack of energy are initially the most prevalent symptoms in their children, whereas less hair than usual is the most prevalent symptom during treatment. Pain, feeling sad, and nausea are initially the most distressing symptoms. Pain is both prevalent and distressing throughout treatment. The child’s symptom burden, as reported by parents, decreases over time. Information about distressing symptoms and when they can be expected may increase acceptance and adaptation in children and parents during and after cancer treatment.

This document proposes a study designed to investigate the association between executive function abilities and social anxiety in a group of adolescent survivors of Acute Lymphocytic Leukemia (ALL) who were treated with chemotherapy for central nervous system prophylaxis. The proposed study is also designed to evaluate a possible interaction effect between executive function abilities and social skills in their impact on social anxiety in this population. The report provides detailed background information describing ALL and available treatments for the disease. It also reviews the literature on both acute and late effects of chemotherapy, with particular attention placed on understanding both neurocognitive and psychosocial effects in the context of adolescent development. The proposed project involves collecting parent and teacher reports to measure the constructs of Executive Function and Social Skills. Parent measures may be completed in English or Spanish. Self-reports of Social Anxiety symptoms in the adolescent survivor sample will also be collected. Simultaneous regression analyses will be used to analyze the influence of executive function abilities on social anxiety. Sequential multiple regression analyses will then be conducted to check for differences in the magnitude of the relationship between executive function abilities and social anxiety with varying levels of social skills. Significant results would inform the development of targeted interventions. For example, if it is determined that executive function abilities are indeed associated with social anxiety symptoms, existing programs focused on neurocognitive remediation could begin to monitor participants for anxiety and provide preventative therapeutic intervention. Additionally, if social skills is confirmed as a moderator, evidence-based interventions targeting the development of social skills in the survivor population would be warranted as well. / text

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Bakgrund: Cancer är en sjukdom som drabbar barn i hela världen. Det finns olika former av behandlingsmetoder som anpassas till individens behov. När ett barn diagnostiseras med cancer drabbas hela familjen, inte bara barnet. Relationen mellan syskon är en av de längsta relationerna en människa har under sin livstid. Händelser som till exempel cancer kan påverka relationen markant och kan komma att ha stor inverkan på det friska syskonets liv. Syfte: Att belysa upplevelsen av att vara syskon till ett barn med cancer. Metod: Litteraturstudie av 11 studier, som sammanställdes och analyserades med inspiration från Fribergs trestegsmodell. Resultat: Resultatet visar att det sker stora förändringar inom familjen när ett barn diagnostiseras med cancer. Syskon känner att cancern tar systern/brodern ifrån dem samt beskriver olika former av copingstrategier som de använder för att hantera upplevelsen. Slutsats: Litteraturstudien visar att syskon ofta känner sig bortglömda, övergivna och har ett behov av uppmärksamhet samt att få vara delaktiga. Nyckelord: Syskon, barncancer, upplevelse / Background: Cancer is a disease that affects children throughout the world. There are various forms of treatment methods that are adapted to the needs of the individual. When a child is diagnosed with cancer it affects the whole family, not just the child. The relationship between siblings is one of the longest relationships a human has during a lifetime. Events such as cancer and death can affect the relationship significantly, and can have a major impact on the healthy sibling's life. Aim: To illustrate the experience of being a sibling to a child with cancer Method: A review containing 11 studies which were analysed and put together with inspiration from Friberg's three-step-model Results: The results that emerged show that there are many changes within the family. Siblings feel that the cancer takes the child away from them and describe the various forms of coping strategies they use to cope with the experience. Conclusion: The review shows that siblings often feel forgotten, abandoned and have a need for attention and involvement. Keywords: Siblings, Childhood cancer, experience

Background: About 250 000 children develops cancer every year. Most of them has a parent and a family who also is getting affected. During this time the parents go through a crisis and the nurse had a central role to help them through the hard time. Aim: The aim of this study was to illuminate parent´s experiences of living with a child with a cancer diagnose during the illness. Method: A literature -based study, qualitative content analysis of 14 qualitative articles. Result: The results are presented in three main themes: "The emotional roller coaster", "The balance of the uncertain" and "The swinging of the support". Conclusion: The parents experienced a lot of feelings during the child's illness and they changed their view of life. A fear of the unknown and a feeling of losing the sense of normality were expressed by the parents. A shuttle between security and disappointment appeared during the entire duration of the illness. Therefore it was important for the parents to get continuous information, opportunities for participation and support from someone they could rely on to feel safe.

The state of the literature on the psychosocial adjustment of children and adolescents with cancer is primed for novel contributions to the promotion of quality of life and depletion of negative psychosocial outcomes. Many recent studies indicate that this population may be at increased risk for depressed and anxious symptomatology; however, there is a large degree of individual variation. Coping responses have been demonstrated as significant predictors of adjustment outcomes with these patients. Research focusing upon coping with childhood chronic illness is progressing toward levels of greater specificity of construct and application; therefore, it is timely to target specific coping mechanisms in response to specified stressors. Health psychology has examined the role of spirituality as promoting positive health outcomes in adult populations. However, the pediatric literature has not empirically addressed this potential coping mechanism for child populations. The current study sought to: (a) develop a preliminary child measure of spiritual coping, and (b) to employ this assessment tool in an empirical investigation of the relationship between spiritual coping and psychosocial adjustment in the childhood cancer population. This investigation included 55 child participants recruited from three hospital settings across the southeastern, Midwestern, and western United States. During the measure development phase, 22 children were interviewed regarding their use of coping strategies (specifically spirituality) to target illness-related stress. The spiritual coping measure was based upon the response set obtained during this phase, and incorporated items into two subscales: existential and religious coping. The rest of the sample (N=33) participated in an individual interview that assessed coping (approach, avoidant, and spiritual) as well as depression, anxiety, and quality of life. A pilot factor analysis was employed to examine the structure of the new spiritual coping measure. Additionally, hierarchical regression analyses were employed to examine the contributions of each coping variable to the prediction of child adjustment outcomes. The results indicated that depression is significantly predicted by the full coping model; however, the analyses for anxiety and quality of life were not significant. Furthermore, spiritual coping was not demonstrated to add significantly to the prediction of child adjustment in the full coping model. Post-hoc analyses revealed a mediation effect for social functioning upon the relationship of existential coping and depression. Additionally, religious coping was found to mediate the effect of emergency room utilization upon perceived efficacy of avoidant coping. The factor analysis for the measure, while preliminary in nature, reflected a two-factor solution with strong loadings that closely approximated the theoretical delineation of the subscales. / Ph. D.

Introdução: O câncer infantil coloca a criança diante de hospitalizações frequentes e prolongadas e expõe a dor e fatores estressores durante suas fases de tratamento. Esta situação pode provocar alterações no desenvolvimento típico da criança. O aspecto lúdico do brincar, com o uso do videogame dentro do hospital, pode ser um elemento importante na busca pela diminuição da dor. Objetivo: Analisar a dor e enfrentamento da dor de crianças e adolescentes com câncer hospitalizadas por meio de intervenção com o uso do videogame. Método: Participaram do estudo 40 crianças e adolescentes hospitalizadas com diagnóstico de câncer e seus cuidadores. A intervenção consistiu em terapia com uso de jogos de videogame WII durante a internação por três dias consecutivos, com sessões de 60 minutos/dia. Antes e após cada sessão, o participante graduou sua dor utilizando a Escala Analógica Visual (EVA) e diagrama do corpo. No inicio e no final do programa de intervenção com videogame foi respondido pelos participantes e pelos pais o questionário \"PedsQLTM Pediatric Pain Coping Inventory TM\" (Child Form; Teen Form; Parent Form) e perguntas sobre o programa com videogame. Resultados: O estudo não demonstrou diferenças estatisticamente significantes sobre o controle e vivência da dor no câncer infantojuvenil, ainda que alguns possíveis efeitos positivos foram observados individualmente. Conclusão: o programa com videogame parece não contribuir na área de suporte terapêutico e intervenções não-farmacológicas para o controle da dor em crianças e adolescentes com câncer de modo coletivo. / Introduction: Childhood cancer places the child in frequent and prolonged hospitalizations and exposes them to stressors factors and pain during different treatment phases. This situation may cause changes in the child´s typical development. The lively aspect of playing, with the aid of videogame inside the hospital ward might be an important element in the search of reducing pain. Puporse: to analyse the pain and pain coping of children and teenagers with cancer during hospitalization with the use of videogame. Method: Participated of the study 40 children and teenagers hospitalized with the diagnosis of cancer and their caregivers. The intervention consisted in therapy with the use of videogame WII during the hospitalization for three consecutive days, with sessions lasting 60 minutes/day. Before and after each session, the participant ranked its pain utilizing the Visual Analog Scale (VAS) and body diagram. In the beginning and at the end of the videogame intervention program, it was answered by the participants and by their caregivers the questionnaire \"PedsQLTM Pediatric Pain Coping Inventory TM (Child Form; Teen Form; Parent Form)\" and questions about the program with videogame. Results: The study did not show statistically signficant differences on the control and on personal pain experience in children and adolescent with cancer that entered the program; yet, some possible positive effects were observed individually. Conclusion: This videogame program intervention did not show benefits on pain control and pain coping for the general study population.