To Feel Belonged: The Voices of Children and Youth with Disabilities on the Meaning of Wellbeing

The aim of this paper was to describe the meaning of wellbeing for children and youth with disabilities from their perspective. Twenty children and young people with a range of disabilities including, cerebral palsy, autism, Aspergers syndrome, Down syndrome, mild to moderate intellectual disability and vision impairment, participated in five focus groups and one interview. Groups were facilitated by at least two experienced professionals, including one scribe who recorded the discussions within the groups and took field notes on contextual information. Open coding was used to initially name and categorise data. Constant comparison methods were then used to compare codes and categories to advance the conceptual understanding. Six themes of the meaning of wellbeing emerged from the data describing participation, the importance of good friends, family factors, anxiety relating to performance at school, coping strategies/resilience, and personal growth and development. The concept of wellbeing from the child??s perspective was described as feeling supported, included and respected, as well as feeling valued and capable. Ideas raised by children and young people have highlighted gaps within current indicator sets of children??s wellbeing. These include reciprocal respect within relationships, coping strategies, feeling valued and having a positive sense of self. Children and young people can provide valuable input into research, regardless of impairment.     

Psychosocial Indicators of Wellbeing for Resettled Refugee Children and Youth: Conceptual and Developmental Directions

In this article we present a framework for the development of psychosocial indicators of wellbeing for refugee children and young people which can be used to assess outcomes of interventions in the settlement context. While some experiences of refugee children and young people overlap with the general population of children and young people, many of their experiences are distinctive because of their exposure to violence prior to arrival and a range of stressors upon resettlement. Drawing on research conducted into outcome indicators at the Victorian Foundation for Survivors of Torture, several indicator domains are presented that have sensitivity and specificity for resettled refugee children and young people. The domains presented are distinctive and multifaceted. They encompass the perspectives of young people, parents, and service providers. They incorporate individual and relational aspects, subjective emotional states and observable behaviours. They include signs and symptoms of disturbances to psychological wellbeing, family wellbeing, connections to social groups and community, and positive expressions of wellbeing. They have been developed with an ecological context in mind and thus take into account a range of key contextual mediating variables.     

Youth justice and health: An argument against proposed changes to the Youth Criminal Justice Act

The Canadian Paediatric Society is deeply concerned about the negative effects on the developmental, psychological and emotional health of young offenders if the Youth Criminal Justice Act is amended as proposed. Changing Canada's youth crime law to achieve stiffer sentences for youth 14 years of age and older who are convicted of serious violent offences is contrary to the United Nations Convention on the Rights of the Child. Treating adolescents as adults puts them at serious health and human rights risks - including trauma, violence and abuse - and interferes with their overall development. Furthermore, rates of mental illness are higher among youth in custody. Youth should only serve their sentence in a facility that is exclusively limited to youth, and considers the rights of youth as well as their mental, physical, developmental and educational needs.     

Bronchiolitis: An Evidence-Based Approach to Management

Bronchiolitis is a common respiratory disease in infancy, and it results in a large number of health care visits and expenditures. Despite an abundance of literature addressing various treatment modalities, management remains largely supportive. Emergency department clinicians must continue to develop a comprehensive understanding of the dynamic and variable nature of the disease process and be able to effectively predict the severity of its clinical course. Finally, there is emerging evidence that highlights some newer therapies, such as nebulized hypertonic saline, that may change the way in which bronchiolitis is treated in the ED; vigilance in monitoring the literature is essential to ensure that patients are treated in the most efficient and effective manner.     

Talking About Youth Health: An Example of Engaging Youth to Improve Child and Youth Health Indicators in British Columbia,Canada

A project initially carried out in 2010 aimed to include youth as well as international child health and data experts in the process of establishing core indicators of child and youth health in the province of British Columbia, Canada. In 2015, trend data and some newly available measures were reviewed by youth and subject matter experts to consider progress against the core indicators established in 2010. The knowledge of experts in child health and development, combined with the lived experience and knowledge of youth, led to the identification of key areas to focus future health promotion efforts. Youth were also able to confirm qualitatively some of the positive quantitative trends seen in the data and to provide important context to the findings from their lived experience. Participants also raised some important questions about survey items used to capture youth’s experiences and the need moving forward to ensure that the development of such items include youth as early in the process as possible to ensure that items are not unnecessarily emotionally distressing and that they are capturing what researchers assume they are.     

An Approach to the Estimation of Growth Standards: The Univariate Case

ABSTRACT. This paper shows how reference values can be determined when the underlying characteristic (say, weight) follows a distribution that is not too distant from the Gaussian. Application of the normalizing Box-Cox power transformation is the basis of our approach. This transformation is monotonic and hence invertible, so offering the choice of two scales of measurement on which to work—the original and the Gaussian. Modified versions of the procedure are provided allowing use of the basic transformation in the presence of certain deficiencies in the data, principally measurement error and misclassification. It is shown that application of Box-Cox to a cohort at several points in time can be quite revealing. When the data are already symmetrical the Box-Cox transformation has no effect: in this case the John-Draper modulus transformation and modifications of it are shown to be helpful. All of this is illustrated by using data from the Swedish Longitudinal Growth Study.     

Interprofessional Education: An Approach to Improve Healthcare Outcomes

Interprofessional education (IPE) approach allows learners from different health professions viz. – medical, dental, nursing, physiotherapy, psychotherapy, psychology etc., learn from, learn with, and learn about, each other. The scope of learning depends upon the requirements and curriculum. Interprofessional education can help in creating a workforce that learns to perform collaborative practice thereby ensuring better health-care outcomes. Medical educators’ and practitioners’ understanding about teaching, learning, and assessment of IPE is rudimentary. Strategies to incorporate IPE in regular curricula need to be debated and barriers associated with its implementation require to be identified. This review highlights the teaching-learning and assessment tools for IPE and discusses potential challenges in its implementation.     

A-TEAM: An Interprofessional Approach to Mandated Reporting in the Hospital Setting

Reporting suspected child maltreatment in pediatric settings presents unique challenges. Variation in mandated reporter training may lead to discomfort and emotional dysregulation. Failure to collaborate inter-professionally potentially results in suboptimal care for vulnerable children and families. A-TEAM promotes awareness, transparency, empathy, a nonjudgmental strategy, and management by an interprofessional team when referring patients for child protective services evaluation. A faculty trained in pediatric trauma nursing led the development of A-TEAM. Integrating nursing and social work expertise protects the integrity of family-centered patient care. The A-TEAM approach may be a valuable contribution to the continuing education of pediatric health care professionals.     

A New Approach to the Measurement of Adaptive Behavior: Development of the PEDI-CAT for Children and Youth with Autism Spectrum Disorders

ABSTRACT. The use of current adaptive behavior measures in practice and research is limited by their length and need for a professional interviewer. There is a need for alternative measures that more efficiently assess adaptive behavior in children and youth with autism spectrum disorders (ASDs). The Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT) is a computer-based assessment of a child's ability to perform activities required for personal self-sufficiency and engagement in the community. This study evaluated the applicability, representativeness, and comprehensiveness of the Daily Activity, Social/Cognitive, and Responsibility domains for children and youth with an ASD. Twenty professionals and 18 parents provided feedback via in-person or virtual focus groups and cognitive interviews. Items were perceived to represent relevant functional activities within each domain. Child factors and assessment characteristics influenced parents’ ratings. In response to feedback, 15 items and additional directions were added to ensure the PEDI-CAT is a meaningful measure when used with this population.     

Transition of the Chronically Ill Youth With Hemoglobinopathy to Adult Health Care: An Integrative Review of the Literature

With the advent of innovative technologies and medical advances, more than a half million chronically ill youth (CIY) cross the threshold into adulthood yearly. Successful transition of the CIY with hemoglobinopathy (e.g., sickle cell, thalassemia) from pediatrics to adult care continues to be an inconsistent process. The purpose of undertaking a comprehensive empirical review was to synthesize the transition literature focusing on CIY with hemoglobinopathy and clinical recommendations. Among 17 studies critically reviewed and summarized, five studies focused on the CIY with hemoglobinopathy, and the remainder on youth with other chronic conditions. Further research on transition, especially for CIY with hemoglobinopathy, is needed.     

Exposure to Risk Factors and the Subjective Wellbeing of Adolescents: the Mediating Role of Time Perspective

This study examined the subjective wellbeing (SWB) and time perspectives (the psychological concepts of past, present, and future) of 460 Israeli adolescents aged 14 to 16, with high versus low exposure to socioeconomic, demographic, and familial risk factors. Participants completed questionnaire measures on time perspectives, life satisfaction, and positive and negative emotions. The results indicated that although adolescents at high risk reported less life satisfaction, no differences were found for positive emotions and negative emotion between the two groups. High risk adolescents scored significantly higher on past negative, present fatalistic, and present hedonistic time perspectives and their overall time perspective profiles were more imbalanced than their low risk peers. Structural equation modeling with bootstrap analysis confirmed that the hypothesized indirect link between risk status and poor SWB was mediated by an imbalanced time perspective profile. The findings suggest that the time perspective profile may shed light on why and how exposure to risk factors is associated with having a lower SWB in adolescence. Future studies and interventions should thus examine the ways in which a change in adolescents’ time perspective can improve their SWB.     

经尾路巨直肠及乙状结肠切除术在治疗肛门成形术后顽固性便秘中的应用

目的 探讨经尾路行巨直肠及乙状结肠切除术治疗肛门成形术后顽固性便秘的可行性。方法 患儿6例，年龄2～18岁，均为先天性肛门闭锁行会阴肛门成形术后合并顽固性便秘和充盈性大便失禁。钡灌肠示：直肠及乙状结肠高度扩张，蠕动差。6例患儿均经尾路切除直肠及远端乙状结肠，同时行肛门成形术。结果 平均手术时间205min(125min～265min)，切除扩张肠管长度23．3cm(10cm～40cm)。术后2月～4月后，6例患儿均可控制排便：12月～30月随访结果示：患儿便秘均消失。6例中4例患1度污便，另2例2度污便，无其他术后并发症。结论 尾路切除巨直肠及乙状结肠是治疗无肛术后顽固性便秘的有效方法。     

An evaluation of the "Youth en Route" program

Youth En Route (YER) is a transition program for youth and young adults with multiple disabilities. It offers a multifaceted approach that includes self-discovery, skill development, and community experience. Underlying the service delivery model is a philosophy of self-determination. This program evaluation measured the self-determination skills, sense of personal control over life choices, and community participation of 34 youth prior to and one year following their involvement with YER. Youth reported statistically and clinically significant improvement from pretest to posttest with respect to both self-determination and sense of personal control. Moreover, youth reported spending significantly more time at posttest than at pretest engaged in volunteer/work activities and community leisure activities. On average, youth reported high satisfaction with YER services. Practical and research implications are discussed.     

Spontaneous Regression of Neuroblastoma: An Experimental Approach

The cytolytic activity of normal pregnancy serum was first studied on murine cancer cells and shown to be the result of a natural IgM antibody that binds to cell surfaces and activates complement. Both the classical and alternative pathways of complement are involved. It was then shown that certain human neuroblastoma cell lines, to the exclusion of other human cancers, react to the same system. It is proposed that this system may play a role in the cytolytic form of spontaneous regression of neuroblastoma.     

Deletion of the Distal Long Arm of Chromosome 1: An Analytical Approach May Contribute to the Diagnosis

The clinical findings in a female infant with a terminal deletion (1) (pter→q42.3:) are described and compared with 18 other cases displaying a similar chromosomal abnormality. bed on an analysis of the 19 cases, postnatal growth retardation, microcephalus, severe mental and motor retardation, muscle hypotonia, high-pitched shrill cry, and hypoplasia of the external genitalia in males were almost invariably observed. The facial features appear to be insufficiently peculiar to a blink diagnosis, but analytical demonstration of round face, sparse hair, broad nose, smooth philtrum, prominent cupid's bow and downturned comers of the mouth may contribute to the diagnosis. The frequencies of convulsions and CNS anomalies, especially of agenesis of the corpus callosum were relatively high.