The Value of Caregiver Time: Costs of Support and Care for Individuals Living with Autism Spectrum Disorder

When a child is diagnosed with autism spectrum disorder, the significance of the impact that diagnosis can have on his or her family’s life is incalculable, except in one respect: cost. If that child is severely impacted and requires constant and lifelong supports, then the value of caregiver time required to support that individual is approximately $5.5 million higher than that for someone without autism. An autism diagnosis of a high-needs child at age two represents the equivalent of telling the family that they must make an immediate lump-sum investment on that day of$1.6 million, invested at a five-per-cent return, to pay for the lifetime costs of care and support their loved one will require. And that amount does not even account for added professional services, such as speech therapists, psychologists, and occupational therapists, or additional out-of-pocket expenses that may be required, such as special equipment or diets. Autism is the most common neurological condition diagnosed in children and it is now estimated that one in 88 children will be diagnosed with autism spectrum disorders. Yet, across Canada, there are significant gaps in the publicly provided support system, leaving the cost burden to be picked up by families. In the case of those individuals requiring constant support, 24 hours a day, every day, the cost of hiring caregivers alone would require an annual income of $200,000 — before a family even begins to pay for shelter, clothing, groceries and other basic necessities. Already families with severe high-needs children are more likely to experience lower income than they might otherwise, due to the extra care commitment their loved one requires. Only a very few families will have the means to afford to pay for total care. So, in most cases, the responsibility for care falls largely, if not entirely, on the family, or in a worst-case scenario, the autistic individual is left with inadequate care. Autism is an expensive condition and governments may underestimate the full cost of community-based supports needed for the vast range of unique needs of those living with autism. A scan of provincial programs finds a patchwork of unequal and incomplete supports for individuals living with autism spectrum disorders. Gaps are particularly evident once individuals leave the public school system, where they are at least provided with some form of day support. Sufficient adult day supports, evening and night supports, quality group homes, the availability of properly trained caregivers and respite services, recreational activities, post-secondary opportunities and employment supports all suffer varying levels of inadequacy across the country. As autism becomes increasingly prevalent, continuing to rely largely on family supports where community services are fragmented or unavailable is not a sustainable approach. Canadian policy-makers will need to consider the costs of a growing and aging population of individuals living with autism who need a range of supports so that adequate quality of care and a decent quality of life are enjoyed by many who remain some of this country’s most vulnerable citizens

It’s Not Just About Baby Teeth: Preventing Early Childhood Caries

Early Childhood Caries (ECC) is a serious disease that is about much more than cavities on baby teeth. In Canada, it is a growing public health problem with adverse long-term effects on children's physical, emotional and intellectual well-being. The failure to invest in preventive care has resulted in reactive, rather than proactive, measures against this disease. These measures are expensive and a needless drain on costs in the public health-care system. Children with severe ECC end up in hospital; in fact, in Canada, this disease is the most common reason children undergo day surgery. From 2010 to 2012, one in 100 children under age five required day surgery for ECC, with approximately 19,000 of these surgeries performed each year on children under age six. Canadian hospital costs for ECC day surgery in children aged one to five ranged from $1,271 to$1,963 per child, totalling $21.2 million between 2010 and 2012. Children from low-income families, along with aboriginal, immigrant and refugee children are disproportionately affected by dental disease, with between 50 per cent and 90 per cent of suffering from some form of ECC. This compares to an average of 57 per cent of children affected in the general population. A recent Alberta study indicates that when municipalities cease fluoridating their water supplies, children suffer increased levels of tooth decay. This has reignited the discussion around whether municipalities should add fluoride to the drinking water, or reinstate it in places where the water used to be fluoridated. While fluoridation can be an effective prevention strategy, this study also shows that fluoride alone is not enough. To reduce the costs and developmental consequences associated with severe ECC and improve well-being, oral health policies focused on disease prevention and health promotion are still necessary. This briefing paper provides background on the etiology, risk factors and prevalence of ECC in Canada to provide scope for the magnitude of this preventable disease in children. To address the avoidable socioeconomic costs, three areas require policy development. First is the need for increased public education and access to ECC prevention services for at-risk populations. Parents need to know they should reduce their children’s intake of sweet drinks, and avoid filling bottles with sugar water, juice or soft drinks, especially at night. They should also clean an infant’s gums with a soft toothbrush or cloth and water starting at birth. When the baby’s first tooth erupts, parents should commence daily brushing with toothpaste and book a first dental visit. Second is the need to empower health-care professionals to integrate ECC prevention in their early visits with parents of young children. Such visits are more common in family medicine, and these primary care providers can play a critical role in educating parents and promoting children’s oral health. Curriculum and continuing education for these health professions should be enhanced to emphasize ECC’s long-term health effects. Third, government should invest in preventive oral health services for children rather than relying on emergency dental care. Children should have access to early preventive dental services to instill in them habits for lifetime oral health. Provinces without universal public funding for children’s preventive dental health should remove the access barriers that children without dental insurance face

Examining the relationship between biomechanics and GMFCS level in children with cerebral palsy

INTRODUCTION Cerebral palsy (CP) is a non-progressive lesion of the developing central nervous system that affects the development of posture and motor control [1]. The Gross Motor Function Classification System (GMFCS) is a clinical tool used to categorize children with CP based on their functional competence. It consists of five levels indicating increasing functional disability. Due to the wide range of motor outcomes in CP, some children may not fit the mould of one of the levels and the classification becomes subjective. Biomechanics provides a quantitative approach that may allow for more specific functional classification [2]. Quantifying biomechanics adaptations may support patient-specific clinical disability classification, and inform longitudinal assessment of the efficacy of therapy intervention. The aim of this study was to determine the relationship between GMFCS levels and subject-specific gait biomechanics in children with CP. It was hypothesized that joint angles and moments differ between participants with GMFCS levels 1 and 2.METHODS Gait biomechanics of 24 children with hemiplegic or diplegic CP were analyzed as part of a secondary data analysis approved by the local ethics committee. Participants were classified according to GMFCS: Level 1 (n=12) - 12.2±1.9 yrs, 1.54±0.07 m, 46.4±12.5 kg; Level 2 (n=12) - 13.6±1.6 yrs, 1.56±0.03 m, 47.8±10.5 kg. All data were collected as part of a clinical consult over the past seven years. The participants had reflective markers placed according to the Helen-Hayes set up while they walked barefoot at their preferred speed on a raised wooden walkway.Data were processed in Visual 3D (C-Motion, USA) using subject-specific lower limb models. These models created local coordinate systems for each of the segments, which were then used to calculate the kinematics (segment motions) and kinetics (forces and moments) for the hip, knee, and ankle joints. Joint angle and moment time curves for the left leg were computed using standard approaches. All data were normalized to stance phase from heel-strike to toe-off (101 data points).  Joint moments were normalized to body mass.Statistical analyses of kinematic and kinetic waveforms were conducted in MATLAB (MathWorks, USA) using statistical parametric mapping (spm1d.org). This analysis method performs statistical tests over a range of values to determine where two sets of waveforms are different from each other. Differences in gait velocity were assessed using Student’s t-test in SPSS (IBM, USA).RESULTS  Figure 1. Left hip adductor/abductor moment. The x-axis represents the stance phase from heel strike (HS) to toe off (TO) and the y-axis is the moment in Nm/kg. The blue lines represent GMFCS Level I participants (12) and red are Level II (12).  The thin lines indicate individual participants and the thick lines denote the mean of the corresponding GMFCS level.In examining the three lower extremity joints biomechanics, two significant differences in hip joint moments were identified with respect to GMFCS levels. GMFCS level 1 participants displayed significantly greater hip abductor (p=0.002, t-test, Figure 1) and hip internal rotation (p=0.047, t-test) moments between 17-26% and 18-21% of stance phase respectively. No significant differences were observed for the knee or ankle kinetics. The kinematics showed no significant differences in any of the three joints. Further, Level 1 participants walked significantly faster (p=0.009, Student’s t-test, level 1 1.1±0.1ms-1, level 2 0.9±0.2 ms-1). DISCUSSION The results of this investigation partially supported the hypothesis, demonstrating few between-group differences in gait biomechanics. The differences found in the hip abductor and internal rotation moments could be due to a number of contributing factors. They could be related to greater abductor muscle weakness in participants with lower functional competence, the differences in walking speeds found, or due to the effects of performing movements with spasticity. Spasticity is commonly seen in children with CP and is increased muscle tone that causes resistance to movement. Its influence on the resulting kinematics and kinetics of the participants in this study has not been determined.ImplicationsInterestingly, most kinematic and kinetic measures in the lower extremities are not significantly different according to GMFCS levels.  The lack of differences may be explained by the substantial variability of biomechanical measures across GMFCS groups. The variability of biomechanics outcomes between participants supports the view that GMFCS classification is likely not sensitive to child-specific function.Future Directions In order to address this shortcoming, further research will be conducted to determine the relationship between biomechanical outcomes and alternative clinical measures of functional capacity (e.g., spasticity and fatigue). Research questions to address in future research include: What is the association of spasticity and gait biomechanics abnormality? Do children with CP display distinct biomechanical clusters? Non-supervised machine-learning may be used to identify associations of biomechanical and clinical data to explore the second question. Such groupings may be beneficial for use as clinical diagnostics and therapy progression monitoring.ACKNOWLEDGEMENTS The NSERC Undergraduate Student Research Award provided funding support for this project.  Funding is acknowledged from the Vi Riddell Pediatric Rehabilitation Research Program, (Alberta Children’s Hospital Foundation) and Alberta Innovates Technology Futures.REFERENCESPalisano et al. DMCN 1997; 39:214-223.Dziuba et al. Acta Bioeng Biomech 2013; Vol. 15, No. 2

HEAD ACCELERATION EVENTS USING INSTRUMENTED MOUTHGUARDS IN FEMALE RINGETTE PLAYERS

Ringette is a contact sport which prompts high rates of head contacts and concussion, some of the highest reported rates in youth sport. Biomechanical forces at the head can cause concussion injury, therefore examination of head acceleration events and head biomechanics during ringette is useful to understand injury risk and mechanism. The purpose of this study was to describe head acceleration events (HAEs) in female youth ringette players and examine head biomechanics during video-verified head acceleration events. Instrumented mouthguards were worn by 8 players and 36 video-verified HAEs were accumulated from in-game exposure. Results indicate athletes sustain HAEs from both direct and indirect head contacts. Mann Whitney U tests reveal no significant differences in biomechanics between direct and indirect HAEs. Most direct head impacts were related to mechanism of head-head contacts or head contact with the boards and typically involved impact high on the head. Indirect HAEs were usually due to whiplash or stabilization. Data also show most HAEs result from deliberate physical contacts initiated by non-ring carriers. Future work with greater data accumulation and verification of head acceleration events can inform coaches and players on the risks of head injury associated with specific mechanisms

Predictors of FIFA 11+ implementation intention in female adolescent soccer:an application of the Health Action Process Approach (HAPA) model

The Fédération Internationale de Football (FIFA) 11+ warm-up program is efficacious at preventing lower limb injury in youth soccer; however, there has been poor adoption of the program in the community. The purpose of this study was to determine the utility of the Health Action Process Approach (HAPA) behavior change model in predicting intention to use the FIFA 11+ in a sample of 12 youth soccer teams (coaches n = 10; 12–16 year old female players n = 200). A bespoke cross-sectional questionnaire measured pre-season risk perceptions, outcome expectancies, task self-efficacy, facilitators, barriers, and FIFA 11+ implementation intention. Most coaches (90.0%) and players (80.0%) expected the program to reduce injury risk but reported limited intention to use it. Player data demonstrated an acceptable fit to the hypothesized model (standardized root mean square residual (SRMR) = 0.08; root mean square of error of approximation (RMSEA) = 0.06 (0.047–0.080); comparative fit index (CFI) = 0.93; Tucker Lewis index (TLI) = 0.91) Task self-efficacy (β = 0.53, p ≤ 0.01) and outcome expectancies (β = 0.13 p ≤ 0.05) were positively associated with intention, but risk perceptions were not (β = −0.02). The findings suggest that the HAPA model is appropriate for use in this context, and highlight the need to target task self-efficacy and outcome expectancies in FIFA 11+ implementation strategies

Informing body checking policy in youth ice hockey in Canada:A discussion meeting with researchers and community stakeholders

OBJECTIVES: Body checking is a significant risk factor for injury, including concussion, in youth ice hockey. Recent evidence regarding injury rates in youth leagues prompted USA Hockey to institute a national policy change in 2011 that increased the age of body checking introduction from 11-12 years old (Pee Wee) to 13-14 years old (Bantam). Body checking policy was more controversial in Canada, and research evidence alone was insufficient to drive change. The purpose of this paper is to provide an example of one of the knowledge exchange processes that occurred between researchers and community stakeholders, leading up to a national policy change in 2013.PARTICIPANTS: There were 28 stakeholder attendees, representing the research community, youth hockey organizations, and child health advocacy groups.SETTING: A one-day meeting held in Whistler, British Columbia, in April 2013.INTERVENTION: Researchers and stakeholders presented current perspectives on evidence and policy change, and discussion focused on an a priori set of questions designed to elicit facilitators and barriers to policy change.OUTCOMES: Three major factors that can drive policy change in the sport safety context were identified: the need for decision-making leadership, the importance of knowledge translation, and the role of sport culture as a barrier to change.CONCLUSION: There is a critical need for researcher and stakeholder partnership in facilitating ongoing policy discussion and informing evidence-based policy change in sport and recreation injury prevention

Psychosocial Factors and the Effects of a Structured Injury Prevention Workshop on Coaches’ Self-Efficacy to Implement the 11+ Exercise Program

International Journal of Exercise Science 13(5): 1459-1475, 2020. Psychosocial factors have both direct and indirect influence on behavior change. Self-efficacy is a key psychosocial factor driving behavior change. It is an individual’s perceived capability of performing a desired action. Structured injury prevention workshops targeting improvements in psychosocial factors in coaches may enhance the dissemination and implementation of the 11+ program in community settings. This study describes baseline psychosocial factors in youth soccer coaches and the effects of a structured 11+ injury prevention workshop on coaches’ self-efficacy to implement the 11+. An adapted questionnaire based on the Health Action Process Approach Model was administered to a sample of coaches, before and after an 11+ workshop. Measures of self-efficacy included: their understanding of the 11+; their ability to use the 11+; using the 11+ with limited space, and using the 11+ when players lacked interest. Data from 73 of 81 coaches were retained for analyses. The majority (74%) of coaches knew about the 11+ program before the workshop, mostly through internet resources and colleagues. 40% to 55% of coaches had at least one unit increase (range, 1 to 6); 29% to 48% did not have a change in measures of self-efficacy. Ten percent to 24% had at least one unit decrease (range, -1 to -3). Wilcoxon matched-pairs signed-ranks test (with Bonferroni correction) indicated significant increases in coaches’ post-workshop (compared to baseline) mean ranks for three of the four self-efficacy measures (p£0.013). A structured workshop significantly improved self-efficacy towards the implementation of the 11+ program in youth soccer coaches