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1.  Knowledge translation of the HELPinKIDS clinical practice guideline for managing childhood vaccination pain: usability and knowledge uptake of educational materials directed to new parents 
BMC Pediatrics  2013;13:23.
Background
Although numerous evidence-based and feasible interventions are available to treat pain from childhood vaccine injections, evidence indicates that children are not benefitting from this knowledge. Unrelieved vaccination pain puts children at risk for significant long-term harms including the development of needle fears and subsequent health care avoidance behaviours. Parents report that while they want to mitigate vaccination pain in their children, they lack knowledge about how to do so. An evidence-based clinical practice guideline for managing vaccination pain was recently developed in order to address this knowledge-to-care gap. Educational tools (pamphlet and video) for parents were included to facilitate knowledge transfer at the point of care. The objectives of this study were to evaluate usability and effectiveness in terms of knowledge acquisition from the pamphlet and video in parents of newly born infants.
Methods
Mixed methods design. Following heuristic usability evaluation of the pamphlet and video, parents of newborn infants reviewed revised versions of both tools and participated in individual and group interviews and individual knowledge testing. The knowledge test comprised of 10 true/false questions about the effectiveness of various pain management interventions, and was administered at three time points: at baseline, after review of the pamphlet, and after review of the video.
Results
Three overarching themes were identified from the interviews regarding usability of these educational tools: receptivity to learning, accessibility to information, and validity of information. Parents’ performance on the knowledge test improved (p≤0.001) from the baseline phase to after review of the pamphlet, and again from the pamphlet review phase to after review of the video.
Conclusions
Using a robust testing process, we demonstrated usability and conceptual knowledge acquisition from a parent-directed educational pamphlet and video about management of vaccination pain. Future studies are planned to determine the impact of these educational tools when introduced in clinical settings on parent behaviors during infant vaccinations.
doi:10.1186/1471-2431-13-23
PMCID: PMC3585914  PMID: 23394070
Vaccination; Pain management; Infant/child; Health information; Knowledge translation; Implementation; Parent education
2.  Development of the Bullying and Health Experiences Scale 
Background
Until recently, researchers have studied forms of bullying separately. For 40 years, research has looked at the traditional forms of bullying, including physical (eg, hitting), verbal (eg, threats), and social (eg, exclusion). Attention focused on cyberbullying in the early 2000s. Although accumulating research suggests that bullying has multiple negative effects for children who are targeted, these effects excluded cyberbullying from the definition of bullying.
Objective
This paper responds to the need for a multidimensional measure of the impact of various forms of bullying. We used a comprehensive definition of bullying, which includes all of its forms, to identify children who had been targeted or who had participated in bullying. We then examined various ways in which they were impacted.
Methods
We used an online method to administer 37 impact items to 377 (277 female, 100 male) children and youth, to develop and test the Bullying and Health Experience Scale.
Results
A principal components analysis of the bullying impact items with varimax rotation resulted in 8 factors with eigenvalues greater than one, explaining 68.0% of the variance. These scales include risk, relationships, anger, physical injury, drug use, anxiety, self-esteem, and eating problems, which represent many of the cognitive, psychological, and behavioral consequences of bullying. The Cronbach alpha coefficients for the 8 scales range from .73 to .90, indicating good inter-item consistency. Comparisons between the groups showed that children involved in bullying had significantly higher negative outcomes on all scales than children not involved in bullying.
Conclusions
The high Cronbach alpha values indicate that the 8 impact scales provide reliable scores. In addition, comparisons between the groups indicate that the 8 scales provide accurate scores, with more negative outcomes reported by children involved in bullying compared to those who are not involved in bullying. This evidence of reliability and validity indicates that these scales are useful for research and clinical purposes to measure the multidimensional experiences of children who bully and are bullied.
doi:10.2196/ijmr.1835
PMCID: PMC3626124  PMID: 23612028
mental health; school bullying; cyberbullying; peer victimization; psychosocial impact; children
3.  A decade of research in Inuit children, youth, and maternal health in Canada: areas of concentrations and scarcities 
International Journal of Circumpolar Health  2012;71:10.3402/ijch.v71i0.18383.
Inuit Canadians are on average about 20 years younger and have a 10-year lower life expectancy than other Canadians. While there have been improvements in Inuit health status over time, significant health disparities still remain. This paper will review the peer-reviewed literature related to Inuit child, youth, and maternal health between 2000 and 2010, investigate which thematic areas were examined, and determine what proportion of the research is related to each group. Establishing areas of research concentrations and scarcities may help direct future research where it is needed. We followed a systematic literature review and employed peer-reviewed research literature on child, youth, and maternal health which were selected from 3 sources, MEDLINE, CINAHL, and the Circumpolar Health Bibliographic Database. The resulting references were read, and summarized according to population group and thematic area. The thematic areas that emerged by frequency were: infectious disease; environment/environmental exposures; nutrition; birth outcomes; tobacco; chronic disease; health care; policy, human resources; interventions/programming; social determinants of health; mental health and wellbeing; genetics; injury; and dental health. The 72 papers that met the inclusion criteria were not mutually exclusive with respect to group studied. Fifty-nine papers (82%) concerned child health, 24 papers (33%) youth health, and 58 papers (81%) maternal health. The review documented high incidences of illness and significant public health problems; however, in the context of these issues, opportunities to develop research that could directly enhance health outcomes are explored.
doi:10.3402/ijch.v71i0.18383
PMCID: PMC3417531  PMID: 22868191
Inuit; children; youth; maternal health; literature review; Canada
4.  Upper limb cerebellar motor function in children with spina bifida 
Purpose
To investigate upper limb cerebellar motor function in children with spina bifida myelomeningocele (SBM) and in typically developing controls.
Methods
Participants with SBM, who had either upper level spinal lesions (n=23) or lower level spinal lesions (n=65), and controls (n=37) completed four upper limb motor function tasks (posture, rebound, limb dysmetria, and diadochokinesis) under four different physical and cognitive challenge conditions. Functional independence was assessed by parental questionnaire.
Results
Fewer SBM participants were able to complete the posture task, and they were less likely than controls to obtain a perfect rebound score. Participants with SBM showed impaired performance in either time, accuracy, or both, on the limb dysmetria and diadochokinesis tasks but responded like controls to physical and cognitive challenges.
Conclusions
Because upper limb motor performance predicted aspects of functional independence, we conclude that upper limb impairments in children with SBM are significant and have direct implications for the level of independent functioning in children with SBM.
doi:10.1007/s00381-009-0991-7
PMCID: PMC3075013  PMID: 19823846
Spina bifida; Myelomeningocele; Upper limb motor function; Cerebellum; Functional independence
5.  Usability Testing of an Online Self-management Program for Adolescents With Juvenile Idiopathic Arthritis 
Background
A new bilingual (English and French) Internet-based self-management program, Teens Taking Charge: Managing Arthritis Online, for adolescents with arthritis and their parents was developed following a needs assessment.
Objectives
This study explored the usability (user performance and satisfaction) of the self-management program for youth with juvenile idiopathic arthritis (JIA) and their parents to refine the health portal prototype.
Methods
A qualitative study design with semi-structured, audio taped interviews and observation by a trained observer was undertaken with two iterative cycles to determine the usability (ease of use, efficiency, errors, and user satisfaction) of the user interface and content areas of the intervention. A purposive sample of English-speaking (n = 11; mean age = 15.4, standard deviation [SD] 1.7) and French-speaking (n = 8; mean age = 16.0, SD 1.2) adolescents with JIA and one of their respective parents/caregivers were recruited from 2 Canadian tertiary care centers. Descriptive statistics and simple content analyses were used to organize data into categories that reflected the emerging usability themes.
Results
All of the participants had access to a computer/Internet at home; however, adolescents were more comfortable using the computer/Internet than their parents. Adolescents and parents provided similar as well as differing suggestions on how the website user interface could be improved in terms of its usability (navigation; presentation and control usage errors; format and layout; as well as areas for further content development). There were no major differences in usability issues between English- and French-speaking participants. Minor changes to the website user interface were made and tested in a second cycle of participants. No further usability problems were identified in the second iterative cycle of testing. Teens and parents responded positively to the appearance and theme of the website (ie, promoting self-management) and felt that it was easy to navigate, use, and understand. Participants felt that the content was appropriate and geared to meet the unique needs of adolescents with JIA and their parents as well as English- and French-speaking families. Many participants responded that the interactive features (discussion board, stories of hope, and video clips of youth with JIA) made them feel supported and “not alone” in their illness.
Conclusions
We describe the usability testing of a self-management health portal designed for English- and French-speaking youth with arthritis and their parents, which uncovered several usability issues. Usability testing is a crucial step in the development of self-management health portals to ensure that the various end users (youth and parents) have the ability to access, understand, and use health-related information and services that are delivered via the Internet and that they are delivered in an efficient, effective, satisfying, and culturally competent manner.
doi:10.2196/jmir.1349
PMCID: PMC2956330  PMID: 20675293
Juvenile idiopathic arthritis; Internet; usability testing; self-management; adolescent
6.  Towards an understanding of the information and support needs of surgical adolescent idiopathic scoliosis patients: a qualitative analysis 
Scoliosis  2009;4:12.
Background
Informed decision making for adolescents and families considering surgery for scoliosis requires essential information, including expected outcomes with or without treatment and the associated risks and benefits of treatment. Ideally families should also receive support in response to their individual concerns. The aim of this study was to identify health-specific needs for online information and support for patients with adolescent idiopathic scoliosis who have had or anticipate having spinal surgery.
Methods
Focus group methodology was chosen as the primary method of data collection to encourage shared understandings, as well as permit expression of specific, individual views. Participants were considered eligible to participate if they had either experienced or were anticipating surgery for adolescent idiopathic scoliosis within 12 months, were between the ages of 10 and 18 years of age, and were English-speaking.
Results
Two focus groups consisting of 8 adolescents (1 male, 7 female) and subsequent individual interviews with 3 adolescents (1 male, 2 female) yielded a range of participant concerns, in order of prominence: (1) recovery at home; (2) recovery in hospital; (3) post-surgical appearance; (4) emotional impact of surgery and coping; (5) intrusion of surgery and recovery of daily activities; (6) impact of surgery on school, peer relationships and other social interactions; (7) decision-making about surgery; (8) being in the operating room and; (9) future worries.
Conclusion
In conclusion, adolescents welcomed the possibility of an accessible, youth-focused website with comprehensive and accurate information that would include the opportunity for health professional-moderated, online peer support.
doi:10.1186/1748-7161-4-12
PMCID: PMC2694769  PMID: 19426491
7.  Verb generation in children with spina bifida 
We investigated verb generation in children with spina bifida meningomyelocele (SBM; n = 55) and in typically developing controls (n = 32). Participants completed 6 blocks (40 trials each) of a task requiring them to produce a semantically related verb in response to a target noun and an additional 40 trials on which they were simply required to read target nouns aloud. After controlling for reading response time, groups did not differ significantly in verb generation response time or learning. Children with SBM produced more non-verb errors than controls and tended to repeat their mistakes over blocks. Verb generation performance was associated with brain volume measures in participants with SBM. Congenital cerebellar dysmorphology is associated with impaired performance in verb generation accuracy, although not with increased response times to produce verbs.
doi:10.1017/S1355617708080181
PMCID: PMC2592551  PMID: 18282316
Cerebellum; Hydrocephalus; Meningomyelocele; Magnetic resonance imaging; Language; Verbal learning
8.  AboutKidsHealth: A Unique Initiative in Pediatric Consumer Health Informatics 
Summary
Consumers of online health information are concerned with issues of quality and trust.
No sites presently offer comprehensive child health information and tools for families seeking solutions to complex questions that may involve disease, lifestyle, behavioral, and educational issues. Parents of children with complex health issues as well as parents of typically developing children, need a trusted, comprehensive online resource to inform and guide. To meet this need, The Hospital for Sick Children, with the support of founding sponsor TD Securities, launched a unique initiative, AboutKidsHealth in June2004. The project employs web technology combined with social marketing campaigns to promote and deliver evidence-based information and programmes in all major areas influencing child health and family quality of life. The web-based infrastructure will also be used to support selected research projects, and to provide enhanced communication and services for families of children with complex conditions and health professionals.
PMCID: PMC1839327

Results 1-8 (8)