Shauna Kingsnorth

Growing Up Ready: A Shared Management Approach

In order to help youth with physical disabilities and their families to plan for the transition to adulthood, well-planned service delivery is essential. This paper provides an account of the work of a childrens rehabilitation centre to develop a transition framework reflecting evidence-based practice. Examination of current transition practices, a review of the literature, and site visits to health care facilities and universities were conducted to identify promising practices in the field of transition to adult services. A transition framework was designed to facilitate the adoption of a shared management approach for helping families and their children to grow up ready. Key elements of the transition framework are described and future plans discussed.

The Effectiveness of Music in Pediatric Healthcare: A Systematic Review of Randomized Controlled Trials

The aim of this study was to systematically review the effectiveness of music on pediatric health-related outcomes. Five electronic databases were searched for randomized controlled/crossover trial designs published between 1984 and 2009. Eligible studies used music as a therapy or intervention, included participants 1 to 18 years, and focused on at least one health-related outcome (with the exclusion of procedural pain). Seventeen studies met the inclusion criteria. Quantitative synthesis was hampered by an inability to aggregate data arising from heterogeneity of interventions, outcomes and measurement tools. Qualitative synthesis revealed significant improvements in one or more health outcomes within four of seven trials involving children with learning and developmental disorders; two of three trials involving children experiencing stressful life events; and four of five trials involving children with acute and/or chronic physical illness. No significant effects were found for two trials involving children with mood disorders and related psychopathology. These findings offer limited qualitative evidence to support the effectiveness of music on health-related outcomes for children and adolescents with clinical diagnoses. Recommendations for establishing a consensus on research priorities and addressing methodological limitations are put forth to support the continued advancement of this popular intervention.

Walking skill versus walking experience as a predictor of barrier crossing in toddlers

The aim of this study was to examine the roles of body size parameters, walking skill, and locomotor experience in determining the abilities of 14-, 18-, 24-, and 30-month-old toddlers to cross a barrier varying in height. Thresholds for barrier crossing were measured using a modified psychophysical staircase procedure, walking skill was assessed using a footprint analysis of gait, and locomotor experience via parental report. Overall, older children surpassed younger children in measures of body size, walking skill, locomotor experience, and crossing thresholds. Analyses relating the various body size, skill, and experiential parameters to crossing thresholds revealed that, replicating earlier findings, barrier crossing was most strongly related to walking experience. These findings are discussed in terms of the limitations of different forms of skill assessment as predictors of visually guided locomotor ability.

A systematic review of self-management interventions for children and youth with physical disabilities

ABSTRACT Purpose: Evidence shows that effective self-management behaviors have the potential to improve health outcomes, quality of life, self-efficacy and reduce morbidity, emergency visits and costs of care. A better understanding of self-management interventions (i.e. programs that help with managing symptoms, treatment, physical and psychological consequences) is needed to achieve a positive impact on health because most children with a disability now live well into adulthood. Method: A systematic review of self-management interventions for school age youth with physical disabilities was undertaken to assess their effectiveness. Comprehensive electronic searches using international web-based reference libraries were conducted for peer-reviewed and gray literature published between 1980 and January 2012. Eligible studies examined the effectiveness of self-management interventions for children and youth between 6 and 18 years of age with congenital or acquired physical disabilities. Studies needed to include a comparison group (e.g. single group pre/post-test design) and at least one quantifiable health-related outcome. Results: Of the 2184 studies identified, six met the inclusion criteria; two involved youth with spina bifida and four with juvenile arthritis. The majority of the interventions ran several sessions for at least 3 months by a trained interventionist or clinician, had one-to-one sessions and meetings, homework activities and parental involvement. Although outcomes varied between the studies, all of the interventions reported at least one significant improvement in either overall self-management skills or a specific health behavior. Conclusions: While self-management interventions have the potential to improve health behaviors, there were relatively few rigorously designed studies identified. More studies are needed to document the outcomes of self-management interventions, especially their most effective characteristics for children and youth with physical disabilities. Implications for Rehabilitation There is some evidence to suggest that self-management interventions for children and youth with spina bifida and arthritis can improve self-management behaviors and health outcomes. Parents’ involvement should be considered in encouraging self-management behaviors at different stages of their child’s development. Much work is needed to explore the longer term implications of self-management interventions for youth with physical disabilities as well as the impact on health care utilization.

Longitudinal Evaluation of Transition Services (“LETS Study”): Protocol for outcome evaluation

BackgroundBecause of advances in medical treatment, most children with physical disabilities can expect to achieve near normal life spans. Typically, coordinated teams of health care providers in specialized pediatric settings care for these children. As these children reach adulthood, however, the availability of services and expertise changes because the adult health care system has different processes designed to meet their specialized needs. Gaps in continuity of care during the transition from pediatric to adult services, and associated poor health outcomes are well documented. In response, new models of care are being introduced to address the complex process of health care transition. This paper describes a study protocol of a client-centred, prospective, longitudinal, mixed-method evaluation of linked model of health care across the lifespan (the LIFEspan Model), offered by a pediatric rehabilitation centre and an adult rehabilitation centre.MethodThis project will include a process and an outcome evaluation of the LIFEspan Model. The process evaluation will detail the specific service delivery that occurs with respect to preparation for transition and transfer of care through chart audits of pediatric medical records and qualitative interviews with LIFEspan staff. The outcome evaluation will measure the effect of the model on: 1) maintaining continuity within the health care system from pediatric to adult care; and 2) secondary outcomes related to health, well-being, social participation, transition readiness, and health care utilization of youth with cerebral palsy and acquired brain injury. Standardized instruments will include Health Utilities Inventory, Assessment of Life Habits, Arc’s Self-Determination, Assessment of Health-Related Quality of Life, Partners in Health Questionnaire, Social Support Questionnaire, and Self-Efficacy for Managing Chronic Disease.DiscussionThe LETS study will be original in its undertaking of a prospective examination of outcomes 1-year post-transition, use of multiple comparison groups, and absence of disability-related exclusion criteria ensuring that the transition experiences of varied populations of young people and their families will be represented.Trial registrationhttp://www.clinicaltrials.gov, ID NCT00975338

Chronic Pain Assessment Tools for Cerebral Palsy: A Systematic Review.

BACKGROUND AND OBJECTIVE: Chronic pain in children with cerebral palsy (CP) is underrecognized, leading to detriments in their physical, social, and mental well-being. Our objective was to identify, describe, and critique pediatric chronic pain assessment tools and make recommendations for clinical use for children with CP. Secondly, develop an evidence-informed toolbox to support clinicians in the assessment of chronic pain in children with disabilities. METHODS: Ovid Medline, Cumulative Index to Nursing and Allied Health Literature, and Embase databases were systematically searched by using key terms “chronic pain” and “clinical assessment tool” between January 2012 and July 2014. Tools from multiple pediatric health conditions were explored contingent on inclusion criteria: (1) children 1 to 18 years; (2) assessment focus on chronic pain; (3) psychometric properties reported; (4) written in English between 1980 and 2014. Pediatric chronic pain assessment tools were extracted and corresponding validation articles were sought for review. Detailed tool descriptions were composed and each tool underwent a formal critique of psychometric properties and clinical utility. RESULTS: Of the retrieved 2652 articles, 250 articles met eligibility, from which 52 chronic pain assessment tools were retrieved. A consensus among interprofessional working group members determined 7 chronic pain interference tools to be of importance. Not all tools have been validated with children with CP nor is there 1 tool to meet the needs of all children experiencing chronic pain. CONCLUSIONS: This study has systematically reviewed and recommended, through expert consensus, valid and reliable chronic pain interference assessment tools for children with disabilities.

Employers’ and employment counselors’ perceptions of desirable skills for entry-level positions for adolescents: how does it differ for youth with disabilities?

Today’s youth face high unemployment and other labor-market challenges; these challenges are often worse for youth with disabilities. This paper explores what employers and employment counselors look for when hiring youth into entry-level jobs and whether they believe youth with disabilities have fewer skills than those without. This study used a qualitative design with a purposive sample of 19 youth employers and employment counselors. Our findings show that youth employers and employment counselors identify the following traits as enhancing young workers’ employability: a well-prepared job applicant; job fit and a good attitude; and soft skills. We find youth with disabilities are perceived to be at a disadvantage. Consistent with a rising body of research, the emphasis on soft skills, and pliability, opens the door for employment discrimination.

Children with medical complexity: a scoping review of interventions to support caregiver stress

BACKGROUND Caring for children with chronic and complex medical needs places extraordinary stress on parents and other family members. A scoping review was undertaken to identify and describe the full range of current interventions for reducing caregiver stress. METHODS Applying a broad definition of caregiver stress, a systematic search of three scientific databases (CINAHL, Embase and Ovid Medline), a general internet search and hand searching of key peer-reviewed articles were conducted. Inclusion criteria were as follows: (i) published in English between 2004-2016; (ii) focused on familial caregivers, defined as parents, siblings or extended family; (iii) targeted children/youth with medical complexity between the ages of 1-24 years; and (iv) described an intervention and impact on caregiver stress. Data on type of intervention, study design and methods, measures and overall findings were extracted. RESULTS Forty-nine studies were included from a list of 22 339 unique titles. Six domains of interventions were found: care coordination models (n = 23); respite care (n = 8); telemedicine (n = 5); peer and emotional support (n = 6); insurance and employment benefits (n = 4); and health and related supports (n = 3). Across studies, there was a wide variety of designs, outcomes and measures used. CONCLUSIONS Positive findings of reductions in caregiver stress were noted within an emerging body of evidence on effective interventions for families of children with medical complexity. A commonality across domains was a significant focus on streamlining services and reducing the burden of care related to varied pressures experienced, including time, finances, care needs and service access, among others. There was non-conclusive evidence however around which of the six identified intervention domains or combination thereof are most effective for reducing stress. These promising findings demonstrate that stress reduction is possible with the right support and that multiple interventions may be effective in reducing burdens of care experienced by families of children with medical complexity.

Exploring employment readiness through mock job interview and workplace role-play exercises: comparing youth with physical disabilities to their typically developing peers.

Abstract Purpose: To assess performance differences in a mock job interview and workplace role-play exercise for youth with disabilities compared to their typically developing peers. Methods: We evaluated a purposive sample of 31 youth (15 with a physical disability and 16 typically developing) on their performance (content and delivery) in employment readiness role-play exercises. Results: Our findings show significant differences between youth with disabilities compared to typically developing peers in several areas of the mock interview content (i.e. responses to the questions: “tell me about yourself”, “how would you provide feedback to someone not doing their share” and a problem-solving scenario question) and delivery (i.e. voice clarity and mean latency). We found no significant differences in the workplace role-play performances of youth with and without disabilities. Conclusions: Youth with physical disabilities performed poorer in some areas of a job interview compared to their typically developing peers. They could benefit from further targeted employment readiness training. Implications for Rehabilitation Clinicians should: Coach youth with physical disability on how to “sell” their abilities to potential employers and encourage youth to get involved in volunteer activities and employment readiness training programs. Consider using mock job interviews and other employment role-play exercises as assessment and training tools for youth with physical disabilities. Involve speech pathologists in the development of employment readiness programs that address voice clarity as a potential delivery issue.

Residential immersive life skills programs for youth with disabilities: service providers' perceptions of experiential benefits and key program features.

Abstract Purpose: The objective was to determine service providers’ perceptions of the experiential benefits of residential immersive life skills (RILS) programs for youth with disabilities, along with important program features. Methods: Thirty-seven service providers from three RILS programs took part in qualitative interviews. Themes were derived using a phenomenological approach. Results: There were perceived benefits for youth, and also for parents and service providers. Study themes concerned the process of youth empowerment, life-changing experiences for youth and parents, and changed service provider views affecting practice. Youth changes were attributed to the residential group format and afforded opportunities, which included being away from home, navigating public transportation, directing attendant services, and sharing intense learning and social experiences with peers. Youth were seen to experience important personal changes in life skills, self-confidence, self-understandings, and self-advocacy. Perceived benefits for parents included realizations concerning their child’s abilities and new hope for the future. Service providers indicated changes in their knowledge, perspectives, and approach to practice. Conclusions: The findings suggest that life skills programs should be intentionally designed to provide challenging experiential opportunities that motivate youth to engage in new life directions by providing new insights, self-realizations, and positive yet realistic views of the future. Implications for Rehabilitation Service providers indicated the importance of challenging, real-world experiential opportunities that provide youth with disabilities with new insights, self-realizations, and positive yet realistic views of the future. Important experiential opportunities for youth included being away from home, navigating public transportation, directing attendant care, and sharing intense learning and social experiences with peers. The findings provide preliminary qualitative evidence that life skills programs should be intentionally designed to provide experiential opportunities that equip youth with knowledge, skills, and confidence, and motivate them to engage in new life directions. Service providers indicated important changes to their practice as a result of their involvement in a RILS program, including adopting a more holistic and facilitative approach to practice.