Tensions experienced by employment support professionals when seeking meaningful employment for persons with developmental disabilities.

PURPOSE: Current research suggests that supported employment for people with developmental disabilities offers significantly higher rates of employment, personal satisfaction, and employer satisfaction. This study focuses on tensions experienced by employment support professionals while working with employers regarding employment for persons with developmental disabilities. These tensions experienced by employment support professionals is an area that is currently under researched and needs further exploration. METHOD: In-depth interviews and focus group sessions were conducted with employment support professionals (n = 34) from a variety of organizations in two Canadian provinces. Theoretical sampling was used to recruit study participants. Data were thematically analysed, informed by a grounded theory approach. RESULTS: Four main themes emerged: (i) Hire for capabilities, not pity, (ii) The bottom line: profit versus moral code, (iii) Education and concerns about accommodations and costs, and (iv) Pros and cons of incentives. CONCLUSIONS: Our study highlights some of the tensions experienced by employment support professionals when they work with employers considering employing persons with developmental disabilities. This information can be used to help employment support professionals, and others, target approaches and supports aimed at building employers' capacity to support meaningful employment for people with developmental disabilities.

Pediatric Sarcopenia: A Paradigm in the Overall Definition of Malnutrition in Children?

BACKGROUND: Malnutrition is a common complication in children with chronic diseases. Sarcopenia is one component of malnutrition, characterized by reduced skeletal muscle mass (SMM) and muscle function. The presence of sarcopenia is associated with adverse outcomes in children. Although there is growing research interest in sarcopenia, no review has been done on this novel concept in pediatrics. The purpose of this review was to explore current evidence in sarcopenia with and without obesity and to evaluate the knowledge gaps in the assessment of childhood sarcopenia. METHODS: A total of 12 articles retrieved from PubMed or Web of Science databases were included. RESULTS: Limited studies have elucidated sarcopenia in pediatrics. Challenges in sarcopenia assessment include heterogeneity in definition and absence of standardized body composition methods used to measure SMM and muscle function tests. There is a lack of age-specific and gender-specific normative data for SMM, particularly in young children and infants. None of the studies incorporated muscle function assessment, causing potential bias and misclassification of sarcopenia. The research in childhood sarcopenia is also hampered by low study quality, limited number of outcomes-based research, and lack of longitudinal data. CONCLUSION: Consensus needs to be reached in methodological approaches in sarcopenia diagnosis, body composition measurements, and age-appropriate muscle function tests in pediatrics. Careful considerations on growth, neurocognitive status, and factors influencing development in various clinical populations are warranted. Early identification of sarcopenia is crucial to enable targeted treatment and prevention to be carried out across the pediatric clinical populations.

A review of goal setting theories relevant to goal setting in paediatric rehabilitation.

BACKGROUND: Goal setting in paediatric rehabilitation is influenced by shifting parent, sibling, caregiver, and child roles over time and evolving child developmental capacity for participation in the process. A theoretical and evidence-informed approach to goal setting, specific to paediatrics, would provide a framework for goal setting in practice and facilitate systematic evaluation of the effects of goal-setting processes on child and family outcomes. OBJECTIVE: To provide an overview of relevant goal-setting theories and their implications for paediatric rehabilitation. METHODS: Prevalent theories were identified from relevant rehabilitation, motivation, behaviour change, and goal-setting literature. Implications for goal setting in paediatrics are summarized according to goal-setting and action-planning phases: (1) preparation, (2) formulation of goals, (3) formulation of action plan, (4) coping planning, and (5) follow up. RESULTS: Social cognitive theory, self-determination theory, Health Action Process Approach, Mastery Motivation, and goal-setting theory are reviewed. Examples of implications for goal setting include, sharing information with families about the purpose of goal setting; identifying goals that are specific, proximal, challenging, and important to the child; and addressing self-efficacy. CONCLUSION: The theories reviewed have clear implications for paediatric rehabilitation research and practice. They address considerations not typically discussed in adult rehabilitation such as observing children to obtain information about meaningful goals when they are unable to communicate them directly and the importance of establishing flexible processes that will accommodate changing family roles over time. Research is needed to evaluate the effects of goal-setting processes and strategies on outcomes in paediatric rehabilitation.

The Young Movers Project: A Case Series Describing Modified Toy Car Use as an Early Movement Option for Young Children With Mobility Limitations.

Modified toy cars for have gained popularity as a tool for early exposure to power mobility. Aims: to (1) determine modifications required, (2) describe frequency of home and community use, (3) describe assistance and encouragement provided, child's motivation and enjoyment of the car, and (4) explore therapist and parent experiences with the cars. Methods: This mixed-methods case series included children aged 13-58 months (n = 5) with cerebral palsy (n = 4) and arthrogryposis and hypotonia (n = 1). Four children received cars and follow-up visits from therapists in their homes. Quantitative data were collected using a family driving record. Qualitative interviews were conducted with parents (n = 5) and therapists (n = 2). The data management strategy described by Knafl (1988) facilitated qualitative data analysis. Results: One child could not be adequately supported; she did not receive a car. Driving frequency ranged from 1.3 to 2.9 days per week, 12-63 min in duration. Qualitative analysis resulted in four themes: (1) A gentle introduction to power mobility, (2) It's more than just mobility, (3) You just need to try it, and (4) Cars are simple tools. Conclusions: Modified toy cars are feasible for early exposure to power mobility with young children with physical disabilities who do not require extensive seating modifications.

Sensory-Based Approaches in Intervention for Children With Autism Spectrum Disorder: Influences on Occupational Therapists' Recommendations and Perceived Benefits.

OBJECTIVE: We investigated factors that influenced occupational therapists' beliefs about and use of sensory-based approaches for children with autism spectrum disorder (ASD). METHOD: Occupational therapists working with children with ASD (N = 211 from 16 countries) completed an online survey addressing their work experience, training, use of sensory-based approaches, and beliefs and perceptions about the effects of the approaches. Linear regression was used to determine predictors of use of and beliefs about sensory-based approaches. RESULTS: Most respondents (98%) used sensory-based approaches for children with ASD and would recommend the approaches for 57% of the children they treated. Having a mentor who promoted sensory-based approaches and practicing outside North America and Australia predicted greater use and perceived effectiveness of these approaches. Less than 5 yr of occupational therapy experience predicted less use of the approaches. CONCLUSION: Respondents selectively used sensory-based approaches for children with ASD and were influenced by country of residence, clinical experience, and mentorship.

Preparing for the future: multi-stakeholder perspectives on autonomous goal setting for adolescents with autism spectrum disorders.

PURPOSE: Self-determination is linked to numerous positive outcomes including improved social inclusion and quality of life for adolescents with autism spectrum disorder. Autonomous participation in therapeutic goal setting is an important component of self-determination. This study examined perceptions of, and barriers to, autonomous goal setting as perceived by: (1) adolescents with autism spectrum disorder, (2) parents of adolescents with autism spectrum disorder, and (3) interdisciplinary professionals. METHOD: Three focus groups (one with each of the key stakeholders) and one joint parent and child interview were conducted. All discussions were audio-recorded, transcribed verbatim and thematically analyzed based on the methods outlined by Braun and Clarke (2006). RESULTS: A total of 7 parents (6 mothers, 1 father), 4 youth with autism spectrum disorder, and 10 professionals participated in the study. Three themes related to current experiences with goal setting emerged: (1) purpose, (2) barriers, and (3) types. CONCLUSIONS: Currently, adolescents with autism spectrum disorder are rarely active participants in the goal setting process. This study provides novel data, from the perspectives of multiple stakeholders, about barriers, perceptions, and actualities related to autonomous goal setting for adolescents with autism spectrum disorder. Implications for rehabilitation Adolescent participation in autonomous goal setting is an important component of self-determination. Rehabilitation professionals, parents, and adolescents with autism spectrum disorder identified similar barriers to autonomous goal setting. Adolescents with autism spectrum disorder described goals as short-term, concrete tasks, whereas parents perceived involvement in goal setting as a gateway to long-term self-determination. Rehabilitation professionals and parents acknowledged the benefits and advocated for increased involvement of adolescents with autism spectrum disorder in the goal setting process. Similar to the paradigm shift toward family-centered care, rehabilitation professionals need to shift to include the involvement and participation of individuals with autism spectrum disorder.

Building Employer Capacity to Support Meaningful Employment for Persons with Developmental Disabilities: A Grounded Theory Study of Employment Support Perspectives.

To explore strategies to build employer capacity to support people with DD in meaningful employment from perspective of employment support workers. A grounded theory study was conducted with 34 employment support individuals. A theoretical sampling approach was used to identify and recruit participants from multiple sites in Ontario and Alberta. Three main themes, with seven sub-themes, emerged: (1) experiences of supporting employment finding for people with DD, (2) institutional influences on employee experiences, and (3) attitudes, assumptions and stigma. Several recommendations related to building employer capacity were offered. Our findings provide insight on specific elements and strategies that can support building employer capacity for persons with DD.

Investigating Autism-Related Symptoms in Children with Prader-Willi Syndrome: A Case Study.

Prader-Willi syndrome (PWS), a rare genetic disorder caused by the lack of expression of paternal genes from chromosome 15q11-13, has been investigated for autism spectrum disorder (ASD) symptomatology in various studies. However, previous findings have been variable, and no studies investigating ASD symptomatology in PWS have exclusively studied children. We aimed to characterize social communication functioning and other ASD-related symptoms in children with PWS, and assessed agreement across measures and rates of ASD diagnosis. Measures included the Autism Diagnostic Observation Schedule-2 (ADOS-2), the Social Communication Questionnaire (SCQ), Social Responsiveness Scale-2 (SRS-2), Social Skills Improvement System-Rating Scales (SSIS-RS), and the Vineland Adaptive Behavioral Scales-II (VABS-II). General adaptive and intellectual skills were also assessed. Clinical best estimate (CBE) diagnosis was determined by an experienced developmental pediatrician, based on history and review of all available study measures, and taking into account overall developmental level. Participants included 10 children with PWS, aged 3 to 12 years. Three of the 10 children were male and genetic subtypes were two deletion (DEL) and eight uniparental disomy (UPD) (with a total of 6 female UPD cases). Although 8 of the 10 children exceeded cut-offs on at least one of the ASD assessments, agreement between parent questionnaires (SCQ, SRS-2, SSIS-RS) and observational assessment (ADOS-2) was very poor. None of the children were assigned a CBE diagnosis of ASD, with the caveat that the risk may have been lower because of the predominance of girls in the sample. The lack of agreement between the assessments emphasizes the complexity of interpreting ASD symptom measures in children with PWS.

Preparing for the future: a review of tools and strategies to support autonomous goal setting for children and youth with autism spectrum disorders.

PURPOSE: Despite recognized benefits, current clinical practice rarely includes direct input from children and youth with autism spectrum disorder (ASD) in setting rehabilitation goals. This study reviews tools and evidence-based strategies to assist with autonomous goal settings for children and youth with ASD. METHOD: This study included two components: (1) A scoping review of existing tools and strategies to assist with autonomous goal setting in individuals with ASD and (2) a chart review of inter-disciplinary service plan goals for children and youth with ASD. RESULTS: Eleven data sources, evaluating five different tools to assist with autonomous goal setting for children and youth with ASD, were found. Three themes emerged from the integration of the scoping review and chart review, which are discussed in the paper: (1) generalizability of findings, (2) adaptations to support participation and (3) practice implications. CONCLUSIONS: Children and youth with ASD can participate in setting rehabilitation goals, but few tools to support their participation have been evaluated, and those tools that do exist do not align well with current services foci. Visual aids appear to be one effective support, but further research on effective strategies for meaningful engagement in autonomous goal setting for children and youth with ASD is warranted. Implications for rehabilitation Persons with ASD are less self-determined than their peers. Input into one's own rehabilitation goals and priorities is an important component of self-determination. Few tools exist to help engage children and youth with ASD in setting their own rehabilitation goals. An increased focus on identifying, developing and evaluating effective tools and strategies to facilitate engagement of children and youth with ASD in setting their own rehabilitation goals is warranted.

Research needs and priorities for transition and employment in autism: Considerations reflected in a "Special Interest Group" at the International Meeting for Autism Research.

Research related to supports for adults with autism spectrum disorder (ASD) is under-developed. As an example, system and service development to support successful transition to adulthood and meaningful vocation for adults has received relatively little research scrutiny until recently, with practitioners and program developers lacking evidenceinformed approaches guiding service delivery. A Special Interest Group (SIG) was convened at the International Meeting for Autism Research in May 2014 and May 2015, with a focus on transitional and vocational issues in ASD. The SIG consisted of 120 international delegates, including self-advocates, family members, researchers, program and policy developers, practitioners, and interdisciplinary ASD trainees. Following a summary of the literature, subgroups of attendees were convened in smaller groups to identify research needs and priorities. International researchers facilitated these discussions with notes taken in each subgroup. Using a qualitative analytic approach, key themes across groups were identified. These key themes, outlined in this paper, address the identified need to (a) advance research capacity; (b) build employer capacity relative to employing persons with ASD; and (c) enhance support resources for adults with ASD and their families. Heightened research activity guiding practice and policy, community/employer engagement, and person and family-centered services were recommended. Implications for advancement and implementation are offered. Autism Res 2017, 10: 15-24. © 2016 International Society for Autism Research, Wiley Periodicals, Inc.

Profile and predictors of service needs for families of children with autism spectrum disorders.

PURPOSE: Increasing demand for autism services is straining service systems. Tailoring services to best meet families' needs could improve their quality of life and decrease burden on the system. We explored overall, best, and worst met service needs, and predictors of those needs, for families of children with autism spectrum disorders. METHODS: Parents of 143 children with autism spectrum disorders (2-18 years) completed a survey including demographic and descriptive information, the Family Needs Survey-Revised, and an open-ended question about service needs. Descriptive statistics characterize the sample and determine the degree to which items were identified and met as needs. Predictors of total and unmet needs were modeled with regression or generalized linear model. Qualitative responses were thematically analyzed. RESULTS: The most frequently identified overall and unmet service needs were information on services, family support, and respite care. The funding and quality of professional support available were viewed positively. Decreased child's age and income and being an older mother predicted more total needs. Having an older child or mother, lower income, and disruptive behaviors predicted more total unmet needs, yet only disruptive behaviors predicted proportional unmet need. Child's language or intellectual abilities did not predict needs. CONCLUSION: Findings can help professionals, funders, and policy-makers tailor services to best meet families' needs.

The impact of autism services on mothers' occupational balance and participation.

This mixed-methods study examined the impact of professional services on employment and leisure participation of mothers of children with autism. In Phase 1, 139 mothers with a child with autism completed a comprehensive survey addressing their experiences with services and occupational participation. In Phase 2, in-depth interviews, informed by grounded theory methodology, were conducted with a sub-sample of 19 mothers to discuss their experiences with services and the relationship between services, employment, and leisure participation. Findings revealed that discontinuity of services was a significant predictor of disrupted employment and/or leisure. A process of occupational imbalance and sacrifice emerged related to mothers' foregoing participation in personally meaningful occupations to focus time on navigating and participating in professional services for their child. Our findings suggest that many professionals who work with individuals with autism conceptually value family-centered care; yet, actual services often ignore family issues and focus exclusively on the child.

Parents' and professionals' perceptions of family-centered care for children with autism spectrum disorder across service sectors.

Family-centered care (FCC) has been linked with improved parent and child outcomes, yet its implementation can be challenging due to family, professional, organizational and systemic factors and policies. This study aims to increase knowledge and understanding of how families with children with autism spectrum disorder (ASD) experience FCC in Alberta, Canada. 152 parents with a child with ASD completed the Measure of Processes of Care, separately for each utilized service sector, and 146 professionals working with persons with ASD completed the Measure of Processes of Care - Service Providers. Additionally, in-depth interviews were conducted with a sub-sample of 19 parents, purposefully sampled for diversity in child and family characteristics. Data were collected in 2011. Descriptive and inferential statistics were used to analyze quantitative data. Interview transcripts were analyzed using grounded theory constant comparison methods, yielding a data generated theoretical model depicting families' experiences with FCC over time and across service sectors. There were no statistically significant differences in FCC scores across service sectors, but statistically significant differences in FCC scores between parents' and professionals' were found. Qualitative data revealed positive experiences and perceptions of receiving FCC from professionals "on the ground" across sectors, but negative experiences and perceptions of FCC at the systems level (i.e., administration, funders). These broad experiences emerged as a core theme "System of Exclusion", which integrated the key themes: (1) "The Fight", (2) "Roles and Restrictions of Care", and (3) "Therapeutic Rapport". Professionals and service providers can use findings to ensure that services reflect current conceptualizations of FCC, and decision and policy makers can use findings to recognize systemic barriers to implementing FCC and inform policy change.

Experience and outcomes of stepping stones triple P for families of children with autism.

This study investigated the experience and perceived outcomes of a behavioural family intervention, standard stepping stones triple P (SSTP), for parents of children with autism. An indepth, prospective, mixed-methods, multiple case-study design was employed. Parent participants and SSTP practitioners took part. Participation in SSTP was consistently associated with improved parental self-efficacy, and was also associated with improved parental psychological well-being and decreased perceived need for behavioural services for some families. Three key themes emerged from the qualitative interview data, reflecting changes attributed to participation in SSTP: (1) changes in the "attribution of cause" of misbehaviour, (2) "Who's the boss?" reflecting a change to parents feeling more in charge of their child's behaviour, daily routines and choices, and (3) "Rewarding is rewarding!" reflecting appreciation of a positive approach to behaviour management. Practitioners discussed their impressions of appropriate participants, timing, structure, and session preferences for SSTP, and implications related to the professional qualifications of practitioners delivering SSTP. Clinical implications for the use of SSTP with families of children with autism are discussed.

Weighted vests, stereotyped behaviors and arousal in children with autism.

The homeostatic theory of stereotyped behaviors assumes that these behaviors modulate arousal. Weighted vests are used to decrease stereotyped behaviors in persons with autism because the input they provide is thought to serve the same homeostatic function. This small-n, randomized and blinded study measured the effects of wearing a weighted vest on stereotyped behaviors and heart rate for six children with autism in the classroom. Weighted vests did not decrease motoric stereotyped behaviors in any participant. Verbal stereotyped behaviors decreased in one participant. Weighted vests did not decrease heart rate. Heart rate increased in one participant. Based on this protocol, the use of weighted vests to decrease stereotyped behaviors or arousal in children with autism in the classroom was not supported.

Occupational therapy students' and graduates' satisfaction with professional education and preparedness for practice.

BACKGROUND: Occupational therapy students' and graduates'perceptions of their professional education have received limited attention. PURPOSE: This paper presents the perspectives of occupational therapy students and graduates regarding satisfaction with their professional education and preparedness for practice. METHODS: Students and graduates provided feedback as part of an occupational therapy educational program evaluation at the University of Alberta, Edmonton, Canada. Data were collected through surveys, focus groups, and telephone interviews. RESULTS: Both students and recent graduates reported that they felt they lacked technical, intervention skills. Longer-term graduates were comfortable with their knowledge and skills, especially their ability to provide individualized intervention. Overall, students and graduates were satisfied with their education; however, it appeared to take between six months and two years of clinical practice for therapists to feel clinically competent. IMPLICATIONS: The results of this evaluation may have important implications for educational programs, students, graduates, fieldwork supervisors, and employers.

Somatosensory stimulation interventions for children with autism: literature review and clinical considerations.

BACKGROUND: There is considerable evidence that children with autism experience sensory dysfunction, which can affect their ability to participate in functional activities. Occupational therapists frequently recommend somatosensory stimulation interventions to mitigate sensory dysfunction and improve a child's ability to function. PURPOSE: This paper examines the rationale and evidence supporting somatosensory stimulation interventions for children with autism. METHOD: A comprehensive review of the literature specific to somatosensory stimulation was conducted, resulting in six published studies that addressed interventions feasible within a child's daily routine. DISCUSSION: Although research related to somatosensory stimulation interventions is becoming more rigorous, empirical support remains limited; therefore, when these interventions are implemented, they should be systematically evaluated. PRACTICE IMPLICATIONS: To help occupational therapists recommend interventions with confidence, strategies are provided to (1) utilise best practices to intervene in an area in which evidence is limited, and (2) help expand the evidence base through clinical research.