Community care for severely frail older people: Developing explanations of how, why and for whom it works.

BACKGROUND: A Community Wellness Team was implemented in North East England in 2014, in line with national policy directives to support frail older people in the community. The service provides a comprehensive and integrated care package, which aims to reduce avoidable admissions, inappropriate service use and enable patients to stay at home. DESIGN: A realist design combining a review of the literature and primary data collection from service providers and patients was used to develop programme theories explaining the links between the Team interventions and expected outcomes. RESULTS: Five programme theories were developed, detailing: trust development and relationship building; risk minimisation in the home environment; advice on self-management; referral to preventative services; and coordination of services. DISCUSSION: The programme theories explain the role and impact of the Community Wellness Team. These programme theories are interrelated and impact one another; a hypothesised progression of programme theories indicating how the Community Wellness Team "works" is discussed. Of particular importance was the comprehensive initial assessment, which leads to the alteration of the social and physical environment within which older people live. CONCLUSION: Severely frail older people present cases that are complex socially, medically, financially and environmentally. In order to meet these needs, the Team coordinators are adopting a complex and flexible person-centred approach. IMPLICATIONS FOR PRACTICE: This study paves the way for further research into the care networks surrounding severely frail older people living in the community, and how they can most effectively be implemented.

Knowledge translation of the HELPinKIDS clinical practice guideline for managing childhood vaccination pain: usability and knowledge uptake of educational materials directed to new parents.

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.

Evaluation of an online education and support intervention for adolescents with diabetes.

The current study evaluated an online education and support website intervention for adolescents with Type 1 diabetes. Participants were enrolled in an 8-week, online program addressing diabetes-related issues for adolescents. The evaluation comprised an intervention trial in which participants were assigned to an intervention or control group, and pre- and post-intervention measures of social support were administered. Outcomes indicated interventional gains approaching significance in participants' quality of relationships with others external to their family. Post-intervention qualitative interviews with intervention group participants identified beneficial impacts of decreased isolation, knowledge gain, and normalization of experience. Findings suggest that online information and support is an important resource in augmenting clinical care. Implications and recommendations for clinical practice are discussed.

A decade of research in Inuit children, youth, and maternal health in Canada: areas of concentrations and scarcities.

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.

Evaluation of an online peer support network for fathers of a child with a brain tumor.

This study explored impacts of an online support network for fathers of a child with a brain tumor. Evaluation comprised pre/post-intervention questionnaires, content analysis of online network postings, and post-intervention qualitative interviews. Findings suggest that this intervention was beneficial to fathers. Positive effects on paternal coping were demonstrated, as were opportunities to grapple with difficult issues related to having a child with a brain tumor. Fathers recommended a combined resource of online and face-to-support, including the development of a support network with a larger participant base. Implications for practice are examined.

Jointly managing arthritis: information needs of children with juvenile idiopathic arthritis (JIA) and their parents.

The objective of this article is to explore information needs of children with juvenile idiopathic arthritis (JIA) and their parents in order to develop a web-based psychoeducational program aimed at improving their quality of life. A qualitative study design was used. A purposive sample of children (n = 41; 8-11 years) with JIA and parents (n = 48) participated in parent-child interviews (n = 29), and four child-focus and four parent-focus group interviews. Transcribed data were organized into categories that reflected emerging themes. Findings uncovered three major themes: "living with JIA", "jointly managing JIA", and "need for a web-based program of JIA information and social Support". Subthemes for "Living with JIA" were as follows: "impact on participation", "worry and distress", and "receiving social support". Subthemes under "Jointly Managing JIA" included "obtaining JIA information", "communication and advocacy", and "strategies to manage JIA". Participants endorsed a web-based program as a way to access JIA information and social support. In order to jointly manage JIA, participants expressed the need for disease-specific information, management strategies, and social support and felt that the Internet was acceptable for delivering these disease-management strategies. Findings from this study will inform development and evaluation of an online program to help children and parents jointly manage JIA.

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.

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.

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.

Towards an understanding of the information and support needs of surgical adolescent idiopathic scoliosis patients: a qualitative analysis.

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.

The Internet is valid and reliable for child-report: an example using the Activities Scale for Kids (ASK) and the Pediatric Quality of Life Inventory (PedsQL).

OBJECTIVE: This study tested the impact of web administration on well-established measures of children's physical function and quality of life. STUDY DESIGN AND SETTING: Participants were recruited from clinics at six hospitals. They completed the Activities Scale for Kids (ASK) and the Pediatric Quality of Life Inventory (PedsQL) questionnaires twice, in a crossover design that used paper and web-based modes of administration. Intraclass correlation coefficients were used to assess the validity of the new web formats relative to the original paper formats and their test-retest reliability. RESULTS: Sixty-nine children ranging in age from 8.0 to 13.4 years (mean=11.0 years) completed the study. The sample included children with cerebral palsy (19), spina bifida (23), and cystic fibrosis (27). The mean ASK score was 77.5 and the mean PedsQL score was 69.1. The intermethod intraclass correlation coefficients were 0.98 (lower limit 0.94) for the ASK and 0.64 (lower limit 0.35) for the PedsQL. These compare to intraclass correlation coefficients of 0.99 and 0.94, respectively, for traditional paper formats. CONCLUSION: The web ASK was valid in comparison to the original paper format. Consistency in mode of administration may be more important when using the PedsQL. Both measures were highly reliable on paper and on the web.

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

Prospective, declarative, and nondeclarative memory in young adults with spina bifida.

The consequences of congenital brain disorders for adult cognitive function are poorly understood. We studied different forms of memory in 29 young adults with spina bifida meningomyelocele (SBM), a common and severely disabling neural tube defect. Nondeclarative and semantic memory functions were intact. Working memory was intact with low maintenance and manipulation requirements, but impaired on tasks demanding high information maintenance or manipulation load. Prospective memory for intentions to be executed in the future was impaired. Immediate and delayed episodic memory were poor. Memory deficits were exacerbated by an increased number of lifetime shunt revisions, a marker for unstable hydrocephalus. Memory status was positively correlated with functional independence, an important component of quality of life.

AboutKidsHealth online resource centres: innovation in family health education.

We conducted initial proof-of-concept and needs assessment research with families and clinicians concerning the online information needs of families of children with complex conditions. Subsequently, we used wireframes to assess the proposed information architecture and content of resource centres with families and clinicians. In collaboration with clinical programs, we developed resource centres for Brain Tumour, Diabetes, and Heart Conditions. We describe the initial research and development of the centres, and usability testing conducted after launch.

Motor learning in children with spina bifida: intact learning and performance on a ballistic task.

Learning and performance on a ballistic task were investigated in children with spina bifida meningomyelocele (SBM), with either upper level spinal lesions (n = 21) or lower level spinal lesions (n = 81), and in typically developing controls (n = 35). Participants completed three phases (20 trials each) of an elbow goniometer task that required a ballistic arm movement to move a cursor to one of two target positions on a screen, including (1) an initial learning phase, (2) an adaptation phase with a gain change such that recalibration of the ballistic arm movement was required, and (3) a learning reactivation phase under the original gain condition. Initial error rate, asymptotic error rate, and learning rate did not differ significantly between the SBM and control groups. Relative to controls, the SBM group had reduced volumes in the cerebellar hemispheres and pericallosal gray matter (the region including the basal ganglia), although only the pericallosal gray matter was significantly correlated with motor adaptation. Congenital cerebellar dysmorphology is associated with preserved motor skill learning on voluntary, nonreflexive tasks in children with SBM, in whom the relative roles of the cerebellum and basal ganglia may differ from those in the adult brain.

Short-term intellectual outcome after arterial ischemic stroke and sinovenous thrombosis in childhood and infancy.

Arterial ischemic stroke is approximately four times more prevalent than sinovenous thrombosis and has been associated with a worse neurologic outcome than sinovenous thrombosis; however, no data are available comparing intellectual outcome after pediatric arterial ischemic stroke and sinovenous thrombosis. We report the short-term intellectual outcome (mean 5.8 months since stroke) in a sample of 72 children, 47 with arterial ischemic stroke, and 25 with sinovenous thrombosis. Intellectual outcome measures were the Full-Scale IQ of the age-appropriate Wechsler intelligence test for older children and the Mental Developmental Index of the Bayley Scales of Infant Development for younger children. Stroke type did not directly influence intellectual outcome. Intellectual outcome was in the normal range whether the children had suffered an arterial ischemic stroke or a sinovenous thrombosis.

Space-based inhibition of return in children with spina bifida.

Inhibition of return (IOR) refers to an increase in time to react to a target in a previously attended location. Children with spina bifida meningomyelocele (SBM) and hydrocephalus have congenital dysmorphology of the midbrain, a brain region associated with the control of covert orienting in general and with IOR in particular. The authors studied exogenously cued covert orienting in 8- to 19-year-old children and adolescents (84 with SBM and 37 age-matched, typically developing controls). The exogenous cue was a luminance change in a peripheral box that was 50% valid for the upcoming target location. Compared with controls, children with SBM showed attenuated IOR in the vertical plane, a deficit that was associated with midbrain dysmorphology in the form of tectal beaking but not with posterior brain volume loss. The data add to the emerging evidence for SBM deficits in attentional orienting to salient information.

Peripersonal spatial attention in children with spina bifida: associations between horizontal and vertical line bisection and congenital malformations of the corpus callosum, midbrain, and posterior cortex.

Horizontal and vertical line bisection was studied in 129 children and adolescents between 8 and 19 years of age, one group (n=32) of typically developing controls and one group (n=97) with spina bifida (SBM), a neurodevelopmental disorder associated with dysmorphology of the corpus callosum, posterior cortex, and midbrain. For each participant, structural brain MRIs were analyzed qualitatively to identify beaking of the midbrain tectum and corpus callosum agenesis and hypoplasia and quantitatively by segmentation and volumetric analyses of regional cortical white and gray matter. Each group showed the line length effect, whereby greater estimation errors are made with longer lines. The group with SBM differed from controls in terms of both accuracy and variability of line bisection. Children with SBM showed pseudoneglect, attending more than controls to left hemispace. The extent of rightward bisection bias was unrelated to right posterior brain volumes, although an intact corpus callosum during development moderated and normalized the exaggerated leftward line bisection bias. More children with SBM than controls attended to inferior hemispace. A normal midbrain and greater posterior cortex volume during development moderated and normalized the downward bias. Children with SBM showed more intra-subject variability than controls. Line bisection in children with SBM reflects three deficits: an exaggerated attentional bias to left hemispace, an abnormal attentional bias to inferior hemispace; and a larger zone of subjective uncertainty in bisection judgments.

Covert orienting to exogenous and endogenous cues in children with spina bifida.

Children with spina bifida meningomyelocele and hydrocephalus (SBM) have congenital dysmorphology of the midbrain and thinning of the posterior cortex, brain regions associated with the control of covert orienting. We studied cued covert orienting in 92 children with SBM, and 40 age-matched typically developing controls. Cues were of three types: exogenous (luminance change in a peripheral box either valid or invalid for upcoming target location), endogenous arrow (a central arrow either valid or invalid for upcoming target location), or endogenous word (a central word either valid or invalid for upcoming target location). Compared to controls, children with SBM showed slowed covert orienting to both exogenous and endogenous cues and a higher cost of attentional disengagement (e.g., a greater cue-validity effect) for exogenous although not for endogenous cues. Covert orienting deficits were associated with midbrain dysmorphology in the form of beaking of the tectum, and with right posterior brain volume loss.

Plasticity for recovery, plasticity for development: cognitive outcome in twins discordant for mid-childhood ischemic stroke.

Cognitive and language profiles in a set of likely monozygotic 13-year-old twins raised together and discordant for an extensive left hemisphere stroke are described 6 years post-stroke. Recovery differed across four skill profiles, created based on a model of plasticity. Full recovery of lost skills and full or partial development of new skills typically involved either semantic memory or right hemisphere lateralized functions such as visual perception skills. Limited development of new skills and full or partial recovery of lost skills took place in either active verbal memory or oral language skills that are left hemisphere lateralized. Language skills concerned with real-time lexical retrieval, or the use and understanding of morphology and grammar, phonological processing skills, and auditory working memory were least likely to recover and continue to develop.