This study identifies variables that influence childhood psychosocial adjustment to cancer diagnosis and treatment by examining the illness-related factors of physical functionality, severity of illness, relapse status, and stage in treatment; family context factors of parenting stress and family psychosocial risk; and within-child factors of personal resiliency. These factors were assessed among 37 children with leukemia or lymphoma, one of their caretakers (29 mothers, 7 fathers, 1 grandmother), and one of their medical care providers (14 physicians, 22 nurse practitioners, 1 physician’s assistant) through a one-time completion of questionnaires. Results revealed that several significant associations were found between child adjustment and independent variables. Specifically, the child’s age at the time of diagnosis, the time since his/her diagnosis, his/her gender, the caregiver’s stress related to parenting an ill child, and the child’s personal resiliency were each identified as factors related to child psychosocial adjustment. Directionally, children who are diagnosed at a younger age, or who have been in treatment for a longer period of time may be at risk for psychosocial adjustment difficulties. Female gender and increased frequency and difficulty of parenting stress may also be risk factors associated with maladjustment. Personal child resiliency, as measured by presence of social and emotional strengths, can be protective in terms of preventing adjustment difficulties.

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

Phenylketonuria (PKU) is a rare inborn error of metabolism that can be managed through lifelong treatment adherence to a restricted diet and supplemental medical formula (Vockley et al., 2014). Untreated PKU can result in severe intellectual disability, anxiety, depression, executive functioning deficits, and seizures (Cappelletti et al., 2013; Moyle et al., 2007). Even individuals who are continuously treated for PKU can experience high rates of anxiety and depression, executive functioning deficits, social difficulties, and lower full-scale IQ scores than their siblings and parents (Bosch et al., 2015; Manti et al., 2016; Waisbren et al., 2007). Additionally, adolescents are at risk for social difficulties due to the restricted diet and treatment of PKU (Bosch et al., 2015). Quality of life is just beginning to be studied in individuals with PKU. Most studies have focused on adults or on parent or clinician ratings of children and adolescents’ quality of life. Results of these studies have been varied with some individuals with PKU and their parents reporting normal quality of life compared to peers (Cazzorla et al., 2014; Thimm, Schmidt, Heldt, & Spiekerkoetter, 2013) and others showing parents rate their children with PKU as being less happy, confident, and joyful than healthy peers (Landolt, Nuoffer, Steinmann, & Superti-Furga, 2002). A qualitative interview study was conducted with five adolescents with PKU between the ages of 14 and 18 years. The purpose of this study was to gain an in-depth awareness of the beliefs and perceptions of these adolescents with PKU on how they understand and conceptualize their condition, the impact it has on their life, factors that influence their quality of life, and perceptions of their peer relationships in regard to their illness. A romantic conceptualization of interviewing was used to build rapport and trust between the interviewer and interviewee in order to access the authentic self of each participant (Roulston, 2010a). Each adolescent participated in a series of four semi-structured individual interviews. Data were analyzed using thematic analysis (Braun & Clarke, 2006). Results indicated adolescents with PKU describe their overall quality of life in positive terms and report similar influences on their life satisfaction and quality of life as other adolescents. Adolescents with PKU identified relationships with family and friends as the most salient influence on their life satisfaction. They largely perceive their social lives to be similar to their peers and believe they are more similar to their peers than different. Adolescents with PKU describe few challenges in social settings and view these challenges as simply inconveniences. However, adolescents with PKU minimize their condition and the impact it has on their life. When talking about PKU, sharing it with others, or when it comes up in social situations they use words that describe it as minor in consequence and significance. The majority of participants had a general understanding and knowledge of how they got PKU, their treatment, and potential consequences. Nevertheless, adolescents also reported a number of incorrect consequences, a lack of awareness of consequences, and misconceptions about PKU and the impact it can have on their life. Implications for medical providers and behavioral health professionals who work with adolescents with PKU include the importance of monitoring and providing extra support during natural transition times, such as moving from elementary school to middle school and then to high school. Current findings also indicate there is room for improvement in health literacy among adolescents with PKU and specific strategies are discussed. Future research should continue to explore the experiences of individuals with PKU during late childhood and early adolescence, the time frame identified as most difficult in the current study. Another direction for future research is further exploration of how PKU influences the idea of self-concept and self-image.

The current study attempted to discern the extent to which a gender bias influences the adult ratings of observed childhood pain. While gender differences in pain sensation are well documented in physiologically mature individuals, there seems to be no such difference in children. The effect of manipulating gender on the procedural pain ratings of 201 university undergraduate and nursing students was examined via a deceptive pain observation task. Results demonstrated no significant difference between gender conditions; however a strong link was established between prior exposure to painful pediatric medical procedures and lower pain ratings. The results suggest that, while a gender bias failed to alter pain ratings, desensitization to viewing painful procedures could alter how much pain healthcare professionals believe a patient is experiencing.

The current study attempted to discern the extent to which a gender bias influences the adult ratings of observed childhood pain. While gender differences in pain sensation are well documented in physiologically mature individuals, there seems to be no such difference in children. The effect of manipulating gender on the procedural pain ratings of 201 university undergraduate and nursing students was examined via a deceptive pain observation task. Results demonstrated no significant difference between gender conditions; however a strong link was established between prior exposure to painful pediatric medical procedures and lower pain ratings. The results suggest that, while a gender bias failed to alter pain ratings, desensitization to viewing painful procedures could alter how much pain healthcare professionals believe a patient is experiencing.

The purpose of this single-case study was to pilot a developmentally sensitive adaptation of an evidence-based intervention aimed at improving nutrition in children with cystic fibrosis (CF). Children with CF must adhere to a high-calorie diet to prevent malnutrition and maintain health. Toddler and preschool age children present a unique feeding challenge to parents as they begin to exert independence and exhibit a variety of challenging behaviors. Parents trying to adhere to CF nutrition guidelines often use ineffective strategies that inadvertently encourage children not to eat. This six-week group parent-training intervention combined nutrition and behavior elements to provide parents with the nutrition and child behavior management strategies necessary to improve children’s intake and ensure adequate nutrition. Parents of four children (one girl) between the ages of 21 and 30 months of age participated in two groups; all children were Caucasian, and all parents were married. Two children were malnourished and had primary goals of increasing intake and weight; two were adequately nourished and had primary goals of improving diet quality. Primary and secondary treatment outcomes were established individually for each child. Families completed three-day diet diaries and video recorded mealtime interactions across two baseline weeks, six weeks of intervention, and a twelve-week post-intervention follow-up. Children’s weights were measured at baseline, post-treatment, and follow-up. Caloric intake was calculated for all meals, and video taped meals were coded using a behavioral coding system. Treatment fidelity was also assessed. The two malnourished children increased caloric intake throughout the intervention and demonstrated clinically significant weight gains at post-treatment. Further, these gains were maintained at follow-up. One of the two adequately nourished children demonstrated improved diet quality. Findings support the efficacy of this developmentally-sensitive adaptation to increase weight in toddler children with CF, and findings provide partial support for the efficacy of this intervention in improving diet quality in adequately nourished children. A parent group intervention provides training in CF-specific child management skills to multiple families and may provide significant benefits to parents who often struggle with the demands of nutrition requirements and toddler behavior.

Spinal fusion is a surgical procedure used to correct structural spinal damage or abnormalities. Recovery is painful and consists of a minimum 3-day hospital stay. Specific body positioning is necessary for healing but is difficult to maintain due to physical discomfort. The purpose of this study was to use a single-subject multiple baseline design to compare the current practice of using standard hospital pillows to a body-sized pillow for increasing comfort and decreasing pain in pediatric patients recovering from spinal fusion surgery. Four adolescents who had recently undergone spinal fusion surgery served as participants. Outcome measures included self- and nurse-report, heart rate, and requested medication. Three patients found that the BodyPillow® increased their comfort as they recovered from surgery; the fourth reported that he was less comfortable. No changes in pain were reported with the BodyPillow®. Results should help guide medical care and future research regarding pediatric spinal fusion recovery.

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Agradecemos a compreensão. on 2016-12-02T12:32:20Z (GMT) / Submitted by GUILHERME COSTA LOPES null (guilhermelho@gmail.com) on 2016-12-02T13:04:14Z No. of bitstreams: 1 DISSERTAÇÃO.FINAL-GUILHERME.LOPES.2016.pdf: 4570581 bytes, checksum: ba3e0a86c356250cc56a4e7061db89ac (MD5) / Approved for entry into archive by Felipe Augusto Arakaki (arakaki@reitoria.unesp.br) on 2016-12-05T15:14:08Z (GMT) No. of bitstreams: 1 lopes_gc_me_bot.pdf: 4570581 bytes, checksum: ba3e0a86c356250cc56a4e7061db89ac (MD5) / Made available in DSpace on 2016-12-05T15:14:08Z (GMT). No. of bitstreams: 1 lopes_gc_me_bot.pdf: 4570581 bytes, checksum: ba3e0a86c356250cc56a4e7061db89ac (MD5) Previous issue date: 2016-08-18 / Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES) / O diagnóstico de câncer infantil promove vivências e enfrentamentos específicos, que podem interferir na adesão aos procedimentos e expectativas de cura. Este estudo transversal, de delineamento quali-quantitativo, visou identificar como as crianças com câncer, com idade entre seis e doze anos, em tratamento quimioterápico, explicavam a causa, os sintomas, e prevenção de doenças comuns e de sua própria doença, o procedimento quimioterápico, a possibilidade de cura, assim como os comportamentos de enfrentamento (coping) que utilizavam no contexto da quimioterapia. O estudo foi realizado em dois centros de referência para o tratamento de câncer pediátrico do centro-oeste paulista. Os cuidadores forneceram os dados sócio demográficos e outros necessários para calcular o risco psicossocial da família. As crianças responderam a uma entrevista sobre causas, sintomas e tratamento das doenças em geral e sobre o câncer e tratamento quimioterápico e a um questionário sobre os comportamentos de enfrentamento utilizados para lidar com a quimioterapia. Elaboraram, também um desenho sobre sua percepção do procedimento, a partir da técnica de desenho-estória. Observou-se que a maioria das famílias se concentrava na categoria risco psicossocial alvo (moderado), especialmente as com baixa escolaridade, problemas financeiros, preocupação excessiva e percepção de que a criança estava sofrendo muito. Ao explicar a doença, as crianças tiveram facilidade em nomeá-la e diferenciar o câncer de outras doenças. A quimioterapia representava a possibilidade de cura, mas, também um procedimento doloroso, com longas esperas, enjoos e desânimo. As estratégias de enfrentamento mais utilizadas pelas crianças frente à quimioterapia foram a distração e solução de problemas. Houve diferenças nos comportamentos de enfrentamento quanto ao sexo, idade e tipos de câncer: meninas referiram buscar mais apoio nas relações interpessoais, crianças mais novas referiram comportamentos menos adaptativos que crianças mais velhas e uma porcentagem muito maior de crianças com leucemia referiu desânimo quando comparadas com crianças com tumores sólidos. As diferenças encontradas, tanto em relação à compreensão da doença e tratamento, quanto aos comportamentos de enfrentamento, sinalizam para a necessidade de intervenções personalizadas, que contemplem características específicas, para facilitar a adaptação da criança ao tratamento. / Child cancer diagnosis promotes specific livings and hardships, that may infer in the consent to the procedure and healing expectations. This qualitative and quantitative transversal study, aimed to identify how children with cancer, aging between six and twelve years old, explained the causes, symptoms, and the prevention of common diseases and their own, the chemotherapy procedure and the disease's cure possibility as well as their coping behavior inside the chemotherapy context. The study has been conducted in two reference of pediatric cancer treatment centers in São Paulo state's mid-west region. The caregivers provided social, demographic and all other important data necessary to calculate the family's psychosocial risk. Children answered to an interview about the causes, symptoms and the treatment of the diseases in general and about the cancer and its chemotherapy treatment and a questionnaire about the coping behaviors used to deal with the chemotherapy. They also elaborated a drawing based on their perception of the procedure, using the drawing-story technique. It was observed that mostly of the families were concentrated in moderate psychosocial risk, especially the ones with low education, financial problems, excessive concern and perception that the child was suffering, Children found it easy to name and set apart cancer from other diseases. Chemotherapy represented a cure possibility but also a painful procedure, with long waiting, nausea and dismay. The most coping strategies used by the children facing chemotherapy were the distraction and problem solving. There were differences in the coping behaviors regarding gender, age and cancer types: girls referred to seeking more interpersonal support, younger children referred less adaptive behavior than the older children and a much larger percentage of children with leukemia referred discouragement when compared to children with solid tumors. The differences found, regarding both the disease's comprehension and its treatment, as the coping behaviors, highlight the necessity of personalized interventions that contemplate specific characteristics, to help children's adaptation to the treatment.

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