Ross Hetherington | University of Toronto (original) (raw)
Papers by Ross Hetherington
Pediatric Neurology, 2003
Cognitive dysfunction has been demonstrated in multiple sclerosis but has not been extensively st... more Cognitive dysfunction has been demonstrated in multiple sclerosis but has not been extensively studied after acute disseminated encephalomyelitis (ADEM). Because ADEM often presents with widespread demyelination, which may not completely resolve, these patients may be at risk for persistent cognitive dysfunction. The study objective was to explore the profile and severity of neurocognitive sequelae in pediatric ADEM. Children aged 6-15 years diagnosed with ADEM were invited to participate in a structured neurologic assessment, neuropsychological evaluation, and a follow-up magnetic resonance imaging. Nine of 15 children diagnosed with ADEM met the age criteria and six participated in the study. The mean age at presentation was 7.7 years; the mean duration of follow-up was 3.5 years. As a group, these children with prior ADEM performed within the average range on cognitive testing. However, a variety of mild cognitive deficits were demonstrated in each of the children, even in those whose magnetic resonance imaging studies had completely normalized. Four children demonstrated a cognitive profile of relatively poorer visuospatial/visuomotor function. The cognitive deficits observed in these children are similar but less severe than those previously reported in adults and children with multiple sclerosis, which may reflect the monophasic nature of ADEM, compared with the chronic, recurrent demyelination characteristic of multiple sclerosis.
International Journal of Circumpolar Health, 2012
Inuit Canadians are on average about 20 years younger and have a 10-year lower life expectancy th... more 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. Fiftynine 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.
Medical and Pediatric Oncology, 1998
As the survival rates for children with brain tumors have increased, attention has been directed ... more As the survival rates for children with brain tumors have increased, attention has been directed to treatment-related sequelae and their effects on quality of life [1,2]. Follow-up studies of children treated for brain tumors often depend on length of survival or global indices of quality of ...
Journal of Neuro-Oncology, 1996
When a malignant tumor invades the child's cerebellum, the cost of successful treatment is often ... more When a malignant tumor invades the child's cerebellum, the cost of successful treatment is often significant cognitive morbidity. A review of neuropsychological outcome revealed that survivors of childhood medulloblastoma (MB) have long-term deficits in intelligence, memory, language, attention, academic skills, psychosocial function, and a compromised quality of life. These deficits varied with chronological age at tumor diagnosis and/or adjuvant treatment, type and duration of presenting symptoms, tumor extension beyond the cerebellum, a history of adjuvant radiation treatment, and time since treatment. The effects on neuropsychological outcome of other factors, such as post-surgical hydrocephalus, were less clear. To understand the interaction between two factors predictive of outcome, age at diagnosis and time since treatment, we analyzed IQ results for a new sample of 25 surgically-treated and radiated MB survivors, and found that age at diagnosis and time since treatment made separable contributions to intellectual morbidity. PIQ appeared to measure some general effects of diffuse cerebral insult because it varied with chronological age of the child at tumor diagnosis but was relatively constant in magnitude, once established. VIQ, in contrast, was somewhat less sensitive to age at diagnosis in treated MB survivors, but declined with time since treatment. These results are important for understanding the academic attainments and continuing rehabilitation needs of childhood MB survivors, because they suggest that these children progressively fail to assimilate new verbally-based knowledge at a developmentally-appropriate rate.
Journal of Medical Internet Research, 2010
The objective of this study was to explore the usability of a bilingual (English and French) Inte... more The objective of this study was to explore the usability of a bilingual (English and French) Internet-based selfmanagement program for adolescents with cancer and their parents and refine the Internet program. A qualitative study design with semistructured, audio-taped interviews and observation was undertaken with 4 iterative cycles. A purposive sample of English-speaking and French-speaking adolescents with cancer and one of their parents/caregivers was recruited. Adolescents and parents provided similar feedback on how to improve the usability of the Internet program. Most changes to the website were completed after the initial cycles of English and French testing. Both groups also found information presented on the website to be appropriate, credible, and relevant to their experiences of going through cancer. Participants reported the program would have been extremely helpful when they were first diagnosed with cancer. Usability testing uncovered some issues that affected the usability of the website that led to refinements in the online program.
Journal of Consulting and Clinical Psychology, 1992
This review presents the multiple changes in emotional response and personality that occur after ... more This review presents the multiple changes in emotional response and personality that occur after damage to the frontal systems, proposes operational definitions, and analyzes the published reports according to these definitions. Neurological causes of frontal lobe damage and associations of frontal dysfunction with psychiatric disturbances are summarized. It is concluded that symptoms of frontal lobe damage that have been labeled as emotional disturbances may be classified as disorders of drive or motivation, mood (subjective emotional experience), and affect (emotional expression). It is proposed that the primary change after frontal lobe pathology is a disorder of personality, a change in the stable response patterns that define an individual as a unique self. Dysfunction of personality includes cognitive abilities, with a disorder of self-reflective awareness as a key deficit.
Brain Injury, 1996
Improvement in performance can occur up to 10 years after traumatic brain injury (TBI). Few previ... more Improvement in performance can occur up to 10 years after traumatic brain injury (TBI). Few previous studies have examined the long-term effects of TBI on information processing. This study used reaction time (RT) tasks of increasing complexity with 10-year post-injury, 5-year post-injury, and control groups to assess any such effects. There were no significant group differences in mean RT; however, in the groups of persons with head injury only, response latency was related to age and to task demands. Older members of the groups of persons with head injury were slower than controls. The variability in performance was significantly higher in the 5-year post-injury group than in both the 10-year group and the control group. There were no significant differences among the groups in their ability to inhibit the processing of redundant information. There were no correlations between any dependent measure and severity of injury. Speed of processing is more sensitive to task complexity in individuals with head injury, but only when age at injury is considered. Most importantly, for rehabilitation purposes, recovery of consistency in performance can be expected more than 5 years after a TBI.
Purpose To investigate upper limb cerebellar motor function in children with spina bifida myelome... more 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 impairm...
The Hospital for Sick Children, Toronto (SickKids), has launched AboutKidsHealth, a project that ... more The Hospital for Sick Children, Toronto (SickKids), has launched AboutKidsHealth, a project that promotes and delivers evidence-based information and programs according to a determinants of health model arising from the understanding that health extends beyond the absence of disease. Accordingly, AboutKidsHealth takes an inclusive approach to the enhancement of quality of life that embraces the home, the greater community, the education system, and the health system. The project employs innovative communication strategies supported by state-of-theart technology to deliver evidence-based information and programs in all major areas influencing child health and family quality of life. The web-based infrastructure is also used to provide enhanced communication for families of children with complex conditions and health professionals, and to develop web-based research projects in collaboration with SickKids scientists.
Medicine 2 0 Conference, May 3, 2011
AboutKidsHealth is a 20-member consumer health informatics team that is the patient education gro... more AboutKidsHealth is a 20-member consumer health informatics team that is the patient education group at The Hospital for Sick Children in Toronto, Canada. Our major project is the child health consumer information site www.AboutKidsHealth.ca. It has been estimated that up to 30% of teenagers have some form of chronic condition. These youth face issues including medication compliance and other disease management protocols; a range of psychosocial issues including autonomy, peer relations, body image, sexuality, risky behaviors, and transition to adult care. With clinician/researchers at the hospital and from other pediatric hospitals across Canada, we have developed a number of internet-based, patient education interventions targeting teenagers with chronic disease or teens contemplating major surgery with the goal of ameliorating some of the issues these teenagers face by providing accessible, interactive disease information, and self-management or decision-making instructions and tools. Information for parents is provided as well. A core goal of these projects is to develop effective, interactive educational materials that once validated by research, will be published on the AboutKidsHealth.ca website. Here we report on three such projects in our Teens Taking Charge series. All three have been developed or are under development as multi-center research studies. The focus of this report is on the overall approach, and the design, architecture, multimedia elements, and interactive features of the programs used to engage, support, and educate youth. Innovative features to engage teens include the use of multiple videos of teens discussing their experiences, professionals interacting with teens, and professionals. Another example is the use of click-through or interactive medical animations to illustrate procedures such as joint injections or changes in curvature post-scoliosis surgery. The first project was a multi-center pilot randomized controlled trial examining the efficacy of an internet-based disease self-management educational program with telephone support for teenagers with juvenile idiopathic arthritis. The site was well received in usability testing. Teens and parents felt the materials were acceptable. Many participants stated the discussion fora and videos made them feel “less alone." Disease knowledge was higher and weekly pain lower in the group receiving the intervention during the pilot study. The second study, still underway, is a two-center study evaluating a program providing education, social support, and medical decision-making support for teenagers and their families contemplating scoliosis surgery. Focus groups conducted with adolescents supported a need for this type of resource, and brought out, among other themes, the importance of including information about recovery at home and in the hospital; post-surgical appearance; emotional impact of surgery and coping; and the impact of surgery on school, peer relations, and social activities. The third project, currently under development, is a disease-specific education and self-management program for teenagers with hemophilia. Examples of how the design challenges of creating a resource for teenage boys will be provided. Approaches to development of these internet-based programs will be discussed, along with issues faced in development. Some highlights of focus group findings, usability testing, and pilot study results will also be presented. []
Interactive Journal of Medical Research, 2012
How to cite TSpace items Always cite the published version, so the author(s) will receive recogni... more How to cite TSpace items Always cite the published version, so the author(s) will receive recognition through services that track citation counts, e.g. Scopus. If you need to cite the page number of the author manuscript from TSpace because you cannot access the published version, then cite the TSpace version in addition to the published version using the permanent URI (handle) found on the record page.
Social Work in Health Care, 2012
The current study evaluated an online education and support website intervention for adolescents ... more 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.
Social Work in Health Care - SOC WORK HEALTH CARE, 2012
This study explored impacts of an online support network for fathers of a child with a brain tumo... more 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.
Journal of School Violence, 2013
BMC Pediatrics, 2013
Background: Although numerous evidence-based and feasible interventions are available to treat pa... more 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.
The objective of this article is to explore information needs of children with juvenile idiopathi... more 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 ¼ 41; 8-11 years) with JIA and parents (n ¼ 48) participated in parent-child interviews (n ¼ 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.
AMIA Annual …, 2006
No sites presently offer comprehensive child health information and tools for families seeking so... more 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 ...
APA PsycNET Our Apologies! - The following features are not available with your current Browser c... more APA PsycNET Our Apologies! - The following features are not available with your current Browser configuration. - alerts user that their session is about to expire - display, print, save, export, and email selected records - get My ...
Pediatric Neurology, 2003
Cognitive dysfunction has been demonstrated in multiple sclerosis but has not been extensively st... more Cognitive dysfunction has been demonstrated in multiple sclerosis but has not been extensively studied after acute disseminated encephalomyelitis (ADEM). Because ADEM often presents with widespread demyelination, which may not completely resolve, these patients may be at risk for persistent cognitive dysfunction. The study objective was to explore the profile and severity of neurocognitive sequelae in pediatric ADEM. Children aged 6-15 years diagnosed with ADEM were invited to participate in a structured neurologic assessment, neuropsychological evaluation, and a follow-up magnetic resonance imaging. Nine of 15 children diagnosed with ADEM met the age criteria and six participated in the study. The mean age at presentation was 7.7 years; the mean duration of follow-up was 3.5 years. As a group, these children with prior ADEM performed within the average range on cognitive testing. However, a variety of mild cognitive deficits were demonstrated in each of the children, even in those whose magnetic resonance imaging studies had completely normalized. Four children demonstrated a cognitive profile of relatively poorer visuospatial/visuomotor function. The cognitive deficits observed in these children are similar but less severe than those previously reported in adults and children with multiple sclerosis, which may reflect the monophasic nature of ADEM, compared with the chronic, recurrent demyelination characteristic of multiple sclerosis.
International Journal of Circumpolar Health, 2012
Inuit Canadians are on average about 20 years younger and have a 10-year lower life expectancy th... more 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. Fiftynine 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.
Medical and Pediatric Oncology, 1998
As the survival rates for children with brain tumors have increased, attention has been directed ... more As the survival rates for children with brain tumors have increased, attention has been directed to treatment-related sequelae and their effects on quality of life [1,2]. Follow-up studies of children treated for brain tumors often depend on length of survival or global indices of quality of ...
Journal of Neuro-Oncology, 1996
When a malignant tumor invades the child's cerebellum, the cost of successful treatment is often ... more When a malignant tumor invades the child's cerebellum, the cost of successful treatment is often significant cognitive morbidity. A review of neuropsychological outcome revealed that survivors of childhood medulloblastoma (MB) have long-term deficits in intelligence, memory, language, attention, academic skills, psychosocial function, and a compromised quality of life. These deficits varied with chronological age at tumor diagnosis and/or adjuvant treatment, type and duration of presenting symptoms, tumor extension beyond the cerebellum, a history of adjuvant radiation treatment, and time since treatment. The effects on neuropsychological outcome of other factors, such as post-surgical hydrocephalus, were less clear. To understand the interaction between two factors predictive of outcome, age at diagnosis and time since treatment, we analyzed IQ results for a new sample of 25 surgically-treated and radiated MB survivors, and found that age at diagnosis and time since treatment made separable contributions to intellectual morbidity. PIQ appeared to measure some general effects of diffuse cerebral insult because it varied with chronological age of the child at tumor diagnosis but was relatively constant in magnitude, once established. VIQ, in contrast, was somewhat less sensitive to age at diagnosis in treated MB survivors, but declined with time since treatment. These results are important for understanding the academic attainments and continuing rehabilitation needs of childhood MB survivors, because they suggest that these children progressively fail to assimilate new verbally-based knowledge at a developmentally-appropriate rate.
Journal of Medical Internet Research, 2010
The objective of this study was to explore the usability of a bilingual (English and French) Inte... more The objective of this study was to explore the usability of a bilingual (English and French) Internet-based selfmanagement program for adolescents with cancer and their parents and refine the Internet program. A qualitative study design with semistructured, audio-taped interviews and observation was undertaken with 4 iterative cycles. A purposive sample of English-speaking and French-speaking adolescents with cancer and one of their parents/caregivers was recruited. Adolescents and parents provided similar feedback on how to improve the usability of the Internet program. Most changes to the website were completed after the initial cycles of English and French testing. Both groups also found information presented on the website to be appropriate, credible, and relevant to their experiences of going through cancer. Participants reported the program would have been extremely helpful when they were first diagnosed with cancer. Usability testing uncovered some issues that affected the usability of the website that led to refinements in the online program.
Journal of Consulting and Clinical Psychology, 1992
This review presents the multiple changes in emotional response and personality that occur after ... more This review presents the multiple changes in emotional response and personality that occur after damage to the frontal systems, proposes operational definitions, and analyzes the published reports according to these definitions. Neurological causes of frontal lobe damage and associations of frontal dysfunction with psychiatric disturbances are summarized. It is concluded that symptoms of frontal lobe damage that have been labeled as emotional disturbances may be classified as disorders of drive or motivation, mood (subjective emotional experience), and affect (emotional expression). It is proposed that the primary change after frontal lobe pathology is a disorder of personality, a change in the stable response patterns that define an individual as a unique self. Dysfunction of personality includes cognitive abilities, with a disorder of self-reflective awareness as a key deficit.
Brain Injury, 1996
Improvement in performance can occur up to 10 years after traumatic brain injury (TBI). Few previ... more Improvement in performance can occur up to 10 years after traumatic brain injury (TBI). Few previous studies have examined the long-term effects of TBI on information processing. This study used reaction time (RT) tasks of increasing complexity with 10-year post-injury, 5-year post-injury, and control groups to assess any such effects. There were no significant group differences in mean RT; however, in the groups of persons with head injury only, response latency was related to age and to task demands. Older members of the groups of persons with head injury were slower than controls. The variability in performance was significantly higher in the 5-year post-injury group than in both the 10-year group and the control group. There were no significant differences among the groups in their ability to inhibit the processing of redundant information. There were no correlations between any dependent measure and severity of injury. Speed of processing is more sensitive to task complexity in individuals with head injury, but only when age at injury is considered. Most importantly, for rehabilitation purposes, recovery of consistency in performance can be expected more than 5 years after a TBI.
Purpose To investigate upper limb cerebellar motor function in children with spina bifida myelome... more 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 impairm...
The Hospital for Sick Children, Toronto (SickKids), has launched AboutKidsHealth, a project that ... more The Hospital for Sick Children, Toronto (SickKids), has launched AboutKidsHealth, a project that promotes and delivers evidence-based information and programs according to a determinants of health model arising from the understanding that health extends beyond the absence of disease. Accordingly, AboutKidsHealth takes an inclusive approach to the enhancement of quality of life that embraces the home, the greater community, the education system, and the health system. The project employs innovative communication strategies supported by state-of-theart technology to deliver evidence-based information and programs in all major areas influencing child health and family quality of life. The web-based infrastructure is also used to provide enhanced communication for families of children with complex conditions and health professionals, and to develop web-based research projects in collaboration with SickKids scientists.
Medicine 2 0 Conference, May 3, 2011
AboutKidsHealth is a 20-member consumer health informatics team that is the patient education gro... more AboutKidsHealth is a 20-member consumer health informatics team that is the patient education group at The Hospital for Sick Children in Toronto, Canada. Our major project is the child health consumer information site www.AboutKidsHealth.ca. It has been estimated that up to 30% of teenagers have some form of chronic condition. These youth face issues including medication compliance and other disease management protocols; a range of psychosocial issues including autonomy, peer relations, body image, sexuality, risky behaviors, and transition to adult care. With clinician/researchers at the hospital and from other pediatric hospitals across Canada, we have developed a number of internet-based, patient education interventions targeting teenagers with chronic disease or teens contemplating major surgery with the goal of ameliorating some of the issues these teenagers face by providing accessible, interactive disease information, and self-management or decision-making instructions and tools. Information for parents is provided as well. A core goal of these projects is to develop effective, interactive educational materials that once validated by research, will be published on the AboutKidsHealth.ca website. Here we report on three such projects in our Teens Taking Charge series. All three have been developed or are under development as multi-center research studies. The focus of this report is on the overall approach, and the design, architecture, multimedia elements, and interactive features of the programs used to engage, support, and educate youth. Innovative features to engage teens include the use of multiple videos of teens discussing their experiences, professionals interacting with teens, and professionals. Another example is the use of click-through or interactive medical animations to illustrate procedures such as joint injections or changes in curvature post-scoliosis surgery. The first project was a multi-center pilot randomized controlled trial examining the efficacy of an internet-based disease self-management educational program with telephone support for teenagers with juvenile idiopathic arthritis. The site was well received in usability testing. Teens and parents felt the materials were acceptable. Many participants stated the discussion fora and videos made them feel “less alone." Disease knowledge was higher and weekly pain lower in the group receiving the intervention during the pilot study. The second study, still underway, is a two-center study evaluating a program providing education, social support, and medical decision-making support for teenagers and their families contemplating scoliosis surgery. Focus groups conducted with adolescents supported a need for this type of resource, and brought out, among other themes, the importance of including information about recovery at home and in the hospital; post-surgical appearance; emotional impact of surgery and coping; and the impact of surgery on school, peer relations, and social activities. The third project, currently under development, is a disease-specific education and self-management program for teenagers with hemophilia. Examples of how the design challenges of creating a resource for teenage boys will be provided. Approaches to development of these internet-based programs will be discussed, along with issues faced in development. Some highlights of focus group findings, usability testing, and pilot study results will also be presented. []
Interactive Journal of Medical Research, 2012
How to cite TSpace items Always cite the published version, so the author(s) will receive recogni... more How to cite TSpace items Always cite the published version, so the author(s) will receive recognition through services that track citation counts, e.g. Scopus. If you need to cite the page number of the author manuscript from TSpace because you cannot access the published version, then cite the TSpace version in addition to the published version using the permanent URI (handle) found on the record page.
Social Work in Health Care, 2012
The current study evaluated an online education and support website intervention for adolescents ... more 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.
Social Work in Health Care - SOC WORK HEALTH CARE, 2012
This study explored impacts of an online support network for fathers of a child with a brain tumo... more 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.
Journal of School Violence, 2013
BMC Pediatrics, 2013
Background: Although numerous evidence-based and feasible interventions are available to treat pa... more 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.
The objective of this article is to explore information needs of children with juvenile idiopathi... more 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 ¼ 41; 8-11 years) with JIA and parents (n ¼ 48) participated in parent-child interviews (n ¼ 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.
AMIA Annual …, 2006
No sites presently offer comprehensive child health information and tools for families seeking so... more 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 ...
APA PsycNET Our Apologies! - The following features are not available with your current Browser c... more APA PsycNET Our Apologies! - The following features are not available with your current Browser configuration. - alerts user that their session is about to expire - display, print, save, export, and email selected records - get My ...