The Gilles de la Tourette Syndrome-Quality of Life Scale for children and adolescents (C&A-GTS-QOL):development and validation of the Italian version

BACKGROUND: Gilles de la Tourette syndrome (GTS) is a chronic childhood-onset neuropsychiatric disorder with a significant impact on patients' health-related quality of life (HR-QOL). Cavanna et al. (Neurology 2008; 71: 1410-1416) developed and validated the first disease-specific HR-QOL assessment tool for adults with GTS (Gilles de la Tourette Syndrome-Quality of Life Scale, GTS-QOL). This paper presents the translation, adaptation and validation of the GTS-QOL for young Italian patients with GTS. METHODS: A three-stage process involving 75 patients with GTS recruited through three Departments of Child and Adolescent Neuropsychiatry in Italy led to the development of a 27-item instrument (Gilles de la Tourette Syndrome-Quality of Life Scale in children and adolescents, C&A-GTS-QOL) for the assessment of HR-QOL through a clinician-rated interview for 6-12 year-olds and a self-report questionnaire for 13-18 year-olds. RESULTS: The C&A-GTS-QOL demonstrated satisfactory scaling assumptions and acceptability. Internal consistency reliability was high (Cronbach's alpha > 0.7) and validity was supported by interscale correlations (range 0.4-0.7), principal-component factor analysis and correlations with other rating scales and clinical variables. CONCLUSIONS: The present version of the C&A-GTS-QOL is the first disease-specific HR-QOL tool for Italian young patients with GTS, satisfying criteria for acceptability, reliability and validity. © 2013 - IOS Press and the authors. All rights reserved.

Biologising parenting:neuroscience discourse, English social and public health policy and understandings of the child

In recent years, claims about children's developing brains have become central to the formation of child health and welfare policies in England. While these policies assert that they are based on neuro-scientific discoveries, their relationship to neuroscience itself has been debated. However, what is clear is that they portray a particular understanding of children and childhood, one that is marked by a lack of acknowledgment of child personhood. Using an analysis of key government-commissioned reports and additional advocacy documents, this article illustrates the ways that the mind of the child is reduced to the brain, and this brain comes to represent the child. It is argued that a highly reductionist and limiting construction of the child is produced, alongside the idea that parenting is the main factor in child development. It is concluded that this focus on children's brains, with its accompanying deterministic perspective on parenting, overlooks children's embodied lives and this has implications for the design of children's health and welfare services.

Adherence to treatment in children and adolescents with cystic fibrosis:a cross-sectional, multi-method study investigating the influence of beliefs about treatment and parental depressive symptoms

Background: Adherence to treatment is often reported to be low in children with cystic fibrosis. Adherence in cystic fibrosis is an important research area and more research is needed to better understand family barriers to adherence in order for clinicians to provide appropriate intervention. The aim of this study was to evaluate adherence to enzyme supplements, vitamins and chest physiotherapy in children with cystic fibrosis and to determine if any modifiable risk factors are associated with adherence. Methods: A sample of 100 children (≤18 years) with cystic fibrosis (44 male; median [range] 10.1 [0.2-18.6] years) and their parents were recruited to the study from the Northern Ireland Paediatric Cystic Fibrosis Centre. Adherence to enzyme supplements, vitamins and chest physiotherapy was assessed using a multi-method approach including; Medication Adherence Report Scale, pharmacy prescription refill data and general practitioner prescription issue data. Beliefs about treatments were assessed using refined versions of the Beliefs about Medicines Questionnaire-specific. Parental depressive symptoms were assessed using the Center for Epidemiologic Studies Depression Scale. Results: Using the multi-method approach 72% of children were classified as low-adherers to enzyme supplements, 59% low-adherers to vitamins and 49% low-adherers to chest physiotherapy. Variations in adherence were observed between measurement methods, treatments and respondents. Parental necessity beliefs and child age were significant independent predictors of child adherence to enzyme supplements and chest physiotherapy, but parental depressive symptoms were not found to be predictive of adherence. Conclusions: Child age and parental beliefs about treatments should be taken into account by clinicians when addressing adherence at routine clinic appointments. Low adherence is more likely to occur in older children, whereas, better adherence to cystic fibrosis therapies is more likely in children whose parents strongly believe the treatments are necessary. The necessity of treatments should be reinforced regularly to both parents and children.

Biologising parenting:neuroscience discourse, English social and public health policy and understandings of the child

In recent years, claims about children's developing brains have become central to the formation of child health and welfare policies in England. While these policies assert that they are based on neuro-scientific discoveries, their relationship to neuroscience itself has been debated. However what is clear is that they portray a particular understanding of children and childhood, one that is marked by a lack of acknowledgment of child personhood. Using an analysis of key government-commissioned reports and additional advocacy documents, this chapter illustrates the ways that the mind of the child is reduced to the brain, and this brain comes to represent the child. It is argued that a highly reductionist and limiting construction of the child is produced, alongside the idea that parenting is the main factor in child development. It is concluded that this focus on children's brains, with its accompanying deterministic perspective on parenting, overlooks children's embodied lives and this has implications for the design of children's health and welfare services.

Blood Lead Levels in Children and Environmental Lead Contamination in Miami Inner City, Florida

Studies have shown that the environmental conditions of the home are important predictors of health, especially in low-income communities. Understanding the relationship between the environment and health is crucial in the management of certain diseases. One health outcome related to the home environment among urban, minority, and low-income children is childhood lead poisoning. The most common sources of lead exposure for children are lead paint in older, dilapidated housing and contaminated dust and soil produced by accumulated residue of leaded gasoline. Blood lead levels (BLL) as low as 10 μg/dL in children are associated with impaired cognitive function, behavior difficulties, and reduced intelligence. Recently, it is suggested that the standard for intervention be lowered to BLL of 5 μg /dl. The objectives of our report were to assess the prevalence of lead poisoning among children under six years of age and to quantify and test the correlations between BLL in children and lead exposure levels in their environment. This cross-sectional analysis was restricted to 75 children under six years of age who lived in 6 zip code areas of inner city Miami. These locations exhibited unacceptably high levels of lead dust and soil in areas where children live and play. Using the 5 μg/dL as the cutoff point, the prevalence of lead poisoning among the study sample was 13.33%. The study revealed that lead levels in floor dust and window sill samples were positively and significantly correlated with BLL among children (p < 0.05). However, the correlations between BLL and the soil, air, and water samples were not significant. Based on this pilot study, a more comprehensive environmental study in surrounding inner city areas is warranted. Parental education on proper housecleaning techniques may also benefit those living in the high lead-exposed communities of inner city Miami.

A content analysis of selected recreational therapy journals from 1990 to 1998: The extent to which children and youth are included

This paper presents an analysis of articles involving children and youth in the last 9 years (1990–1998) of professional literature in recreational therapy. A total of 539 articles were analyzed to examine the authors, subjects, methods, and outcomes of therapeutic recreation studies published in three selected journals: Therapeutic Recreation Journal, Leisure Studies , and Leisure Sciences. A central finding was that the literature involving children and youth was very under-represented in the journals. Only 6.5% of the articles targeted children and youth; of this group, approximately two thirds were research-based; the remaining articles were conceptual papers. The findings are discussed in terms of the need for future scholarships in recreational therapy to target children and youth, including those with disabilities. ^

The influence of spirituality, race/ethnicity and religion on parent grief and mental health at one and three months after their infant's/child's death in the neonatal or pediatric intensive care unit

The death of an infant/child is one of the most devastating experiences for parents and immediately throws them into crisis. Spiritual and religious coping strategies may help parents with their loss. The purposes of this longitudinal study were to: (1) describe differences in bereaved parents' use of spiritual coping strategies across racial/ethnic and religious groups, mother/father dyads, and time—one (T1) and three (T2) months after the infant's/child's death in the neonatal (NICU) or pediatric intensive care unit (PICU), and (2) test the relationship between spiritual coping strategies and grief, mental health, and personal growth for mothers and fathers at T1 and T2. A sample of 126 Hispanic, Black/African American, and White parents of 119 deceased children completed the Spiritual Coping Strategies scale, Beck Depression Inventory-II, Impact of Events-Revised, Hogan Grief Reaction Checklist, and a demographic form at T1 and T2. Controlling for race and religion, spiritual coping was a strong predictor of lower grief, better mental health, and greater personal growth for mothers at T1 and T2 and lower grief for fathers at T1. The findings of this study will guide bereaved parents to effective strategies to help them cope with their early grief.

Time spent with children and working parents' willingness to medicate ADHD-like behaviors

ADHD, which refers to one of the most common behavioral problems among children, is subject to controversial arguments surrounding its nature and its primary treatment with psychiatric medications. At the heart of the problem are parents, whose responsibility includes providing pivotal information to clinicians for the diagnosis and deciding whether their children will receive medications. This study investigates the relationship between working parents' willingness to medicate ADHD-like behaviors and the time they are able to spend with their children during a regular workday. The importance of time spent with children derives from the observation that it is likely to influence not only parents' judgments of their children's behaviors but the behaviors themselves. The relationship was investigated using a subsample of 551 working parents (452 parents reporting no child with problems and 99 parents reporting child with problems) drawn from a population-based telephone survey of parents in the Miami-Dade and Broward counties of Florida. A series of path analyses, controlling for selected socio-demographic and family variables, showed that spending more time with their children during a regular workday was significantly related to being less willing to medicate ADHD-like behaviors. The association was stronger for parents reporting having a child with emotional and behavioral problems (β = −.20) and faint for other parents (β = −.06). The interpretation of the study findings emphasizes the vagueness surrounding the nature of ADHD and the events and procedures leading to the diagnosing of a child, as well as the delicate situations in which parents find themselves.

Community library programs that work: Building youth and family literacy

A collection of versatile best practices for promoting literacy development by utilizing local community connections in school and public libraries. This book provides a fresh approach to learning as well as guidelines for creating dynamic and relevant library programs for children, teens, and families. Organized thematically, each chapter includes relevant topical research and three to eight community-focused approaches. Programs range from small, single-library initiatives in rural communities to multi-site, cross-border initiatives. This resource includes collaborative and locally inspired programs, many of which can be scaled to the budget of any library, school, or community organization.