A Case Study Implementing a Social Needs Screening Process and a Family Navigation Hub at Holland Bloorview Kids Rehabilitation Hospital.

Identifying and addressing clients' and families' most pressing social determinants of health needs are integral to quality healthcare. Healthcare leaders and front-line clinicians have long recognized the connection between unmet essential resource needs, such as food, housing and transportation and health outcomes. As a component of broader organizational efforts to improve equitable access to services, a social needs screening (SNS) initiative was introduced, along with a Family Navigation Hub providing navigation interventions. This paper describes the systematic approach taken to support the SNS initiative implementation and highlights evaluation results of the first year of activity.

Autonomy, self-realization, and psychological empowerment: a prospective mixed methods study of the effects of residential immersive life skills programs for youth with physical disabilities.

PURPOSE: To examine changes in self-determination associated with youth participation in residential immersive life skills (RILS) programs. METHOD: In this prospective mixed methods study, the Arc's Self-Determination Scale was administered pre- and post-program, and at 3- and 12-month follow-ups, to 27 RILS youth and a comparison group of 11 youth enrolled in a non-residential life skills program. Ten RILS youth were interviewed 3 and 12 months post-program, with content analysis used to explore changes in autonomy, self-realization, and psychological empowerment. RESULTS: RILS youth showed statistically significant increases in autonomy immediately after the program, which were maintained one year later, whereas the comparison group displayed increased autonomy only at 3 months post-program. Qualitatively, RILS youth emphasized changes in behavioral autonomy and psychological empowerment 3 months post-program, whereas at one year there was greater emphasis on changes in self-realization. Using a triangulation protocol, the mixed methods data were interpreted as showing agreement regarding changes in autonomy due to intervention, partial agreement regarding self-realization, and dissonance regarding psychological empowerment. CONCLUSIONS: RILS programs can enhance the autonomy of youth with physical disabilities and contribute to their sense of confidence and understanding of themselves as they move forward in life.

The findings suggest the importance of the immersive, away-from-home component of residential immersive life skills programs in enhancing the autonomy of youth with disabilitiesYouth reported changes in their level of autonomy after attending residential immersive life skills programs, as well as feeling more confident in living on their ownResidential immersive life skills programs can contribute to youth's understanding of themselves as they transition to adulthood.

Understanding the benefits and challenges of outpatient virtual care during the COVID-19 pandemic in a Canadian pediatric rehabilitation hospital.

PURPOSE: The evolving virtual health care experience highlights the potential of technology to serve as a way to enhance care. Having virtual options for assessment, consultation and intervention were essential during the coronavirus (COVID-19) pandemic, especially for children with disabilities and their families. The purpose of our study was to describe the benefits and challenges of outpatient virtual care during the pandemic within pediatric rehabilitation. METHODS: This qualitative study, part of a larger mixed methods project, involved in-depth interviews with 17 participants (10 parents, 2 youth, 5 clinicians) from a Canadian pediatric rehabilitation hospital. We analyzed the data using a thematic approach. RESULTS: Our findings demonstrated three main themes: (1) benefits of virtual care (e.g., continuity of care, convenience, stress reduction and flexibility, and comfort within the home environment and enhanced rapport); (2) challenges related to virtual care (e.g., technical difficulties and lack of technology, environmental distractions and constraints, communication difficulty, and health impacts); and (3) advice for the future of virtual care (i.e., offering choice to families, enhanced communication and addressing health equity issues). CONCLUSIONS: Clinicians and hospital leaders should consider addressing the modifiable barriers in accessing and delivering virtual care to optimize its effectiveness.

Families are invested in access to virtual care appointments and can benefit from clear communication about choices regarding appointment options and supports in how to access and use technology for equitable access to care.Hospitals should aim to provide clinicians with an appropriate workspace (i.e., private, quiet with adequate room to demonstrate what they need to do), equipment and technology to have virtual care appointments.Current understanding of virtual care delivery suggests a tailored approach, with some types of appointments, such as follow-ups or check-ins, more suited to this modality than other more hands-on therapy.

Benefits of residential immersive life skills programs: a prospective study of autonomy and self-efficacy gains and sex differences in youth with disability.

PURPOSE: To determine whether Residential Immersive Life Skills programs (RILS) result in reliable change in autonomy and self-efficacy of youth with disabilities and whether gains persist over time. Sex differences and program response patterns were also examined. MATERIALS AND METHODS: Autonomy from the ARC's Self-Determination Scale and self-efficacy from the General Self-Efficacy Scale were completed by participants at baseline, post-intervention, 3-month, and at 12-month follow-ups. Reliable change index was calculated and examined over time. RESULTS: Autonomy improved significantly following the completion of RILS program and gains persisted and increased at 12-month follow-up. Participants who reliably improved in autonomy (program-responders) also improved in self-efficacy. The program-responders began the program with significantly lower autonomy and self-efficacy scores at baseline and differed in personal factor relative to those who did not experience increased autonomy post-program (non-responders). There were sex differences in program response with more male participants responding to the program. CONCLUSIONS: RILS programs can result in sustained improvements in autonomy and self-efficacy. Urgency for change and personal needs/priorities may contribute to growth experiences. We recommend including a social connectedness module that formally facilitates friendships and social development to better meet the social needs of all youth, especially females with disabilities.

Youth's autonomy improves following participation in Residential Immersive Life Skills programs.Over time, improvements in youth autonomy may lead to improvements in self-efficacy.It is important to measure gains over time as beneficial change increase over time.More male participants may experience outcome change in autonomy than female participants.Urgency for change and personal needs/priorities may contribute to growth experiences.

Development and Usability Testing of a Web-Based Workplace Disability Disclosure Decision Aid Tool for Autistic Youth and Young Adults: Qualitative Co-design Study.

BACKGROUND: Deciding whether and how to disclose one's autism at work is complex, especially for autistic youth and young adults who are newly entering the labor market and still learning important decision-making and self-determination skills. Autistic youth and young adults may benefit from tools to support disclosure processes at work; however, to our knowledge, no evidence-based, theoretically grounded tool exists specifically for this population. There is also limited guidance on how to pursue the development of such a tool in collaboration with knowledge users. OBJECTIVE: This study aimed to co-design a prototype of a disclosure decision aid tool with and for Canadian autistic youth and young adults, explore the perceived usability of the prototype (usefulness, satisfaction, and ease of use) and make necessary revisions, and outline the process used to achieve the aforementioned objectives. METHODS: Taking a patient-oriented research approach, we engaged 4 autistic youths and young adults as collaborators on this project. Prototype development was guided by co-design principles and strategies, and tool content was informed by a previous needs assessment led by our team, the autistic collaborators' lived experiences, considering intersectionality, research on knowledge translation (KT) tool development, and recommendations from the International Patient Decision Aid Standards. We co-designed a web-based PDF prototype. To assess perceived usability and experiences with the prototype, we conducted 4 participatory design and focus group Zoom (Zoom Video Communications) sessions with 19 Canadian autistic youths and young adults aged 16 to 29 (mean 22.8, SD 4.1) years. We analyzed the data using a combined conventional (inductive) and modified framework method (deductive) analysis to map the data onto usability indicators (usefulness, satisfaction, and ease of use). Grounded in participants' feedback, considering factors of feasibility and availability of resources, and ensuring tool fidelity, we revised the prototype. RESULTS: We developed 4 categories pertaining to the perceived usability of and participant experiences with the prototype: past disclosure experiences, prototype information and activities, prototype design and structure, and overall usability. Participant feedback was favorable and indicative of the tool's potential impact and usability. The usability indicator requiring the most attention was ease of use, which was prioritized when revising the prototype. Our findings highlight the importance of engaging knowledge users throughout the entire prototype co-design and testing processes; incorporating co-design strategies and principles; and having content informed by relevant theories, evidence, and knowledge users' experiences. CONCLUSIONS: We outline an innovative co-design process that other researchers, clinicians, and KT practitioners may consider when developing KT tools. We also developed a novel, evidence-based, and theoretically informed web-based disclosure decision aid tool that may help autistic youth and young adults navigate disclosure processes and improve their transitional outcomes as they enter the workforce.

Using the COM-B Model and Theoretical Domains Framework to Understand Workplace Disclosure Experiences, Influencers, and Needs Among Autistic Young Adults.

For autistic young adults, deciding whether to disclose their autism at work is complex. Minimal research explores what they need to support disclosure and what influences decisions. To understand disclosure needs and influencers, we explored (i) disclosure decision-making experiences and (ii) perceptions of the disclosure process among autistic young adults. We conducted focus groups using the Capability, Opportunity, Motivation, Behaviour Model and Theoretical Domains Framework (TDF). We analyzed data from 23 participants and mapped onto the TDF to develop five themes: (1) workplace environment, (2) perceptions of disclosure outcomes, (3) personal factors and identity, (4) disclosure-related ambitions and determination, and (5) know-hows of disclosure. Future work should prioritize developing disclosure decision-making supports and investigate employer roles in fostering inclusive workplaces.

Connecting for Care: a protocol for a mixed-method social network analysis to advance knowledge translation in the field of child development and rehabilitation.

BACKGROUND: Connections between individuals and organizations can impact knowledge translation (KT). This finding has led to growing interest in the study of social networks as drivers of KT. Social networks are formed by the patterns of relationships or connections generated through interactions. These connections can be studied using social network analysis (SNA) methodologies. The relatively small yet diverse community in the field of child development and rehabilitation (CD&R) in Canada offers an ideal case study for applying SNA. The purposes of this work are to (1) quantify and map the structure of Canadian CD&R KT networks among four groups: families, health care providers, KT support personnel, and researchers; (2) explore participant perspectives of the network structure and of KT barriers and facilitators within it; and (3) generate recommendations to improve KT capacity within and between groups. Aligning with the principles of integrated KT, we have assembled a national team whose members contribute throughout the research and KT process, with representation from the four participant groups. METHODS: A sequential, explanatory mixed-method study, within the bounds of a national case study in the field of CD&R. Objective 1: A national SNA survey of family members with advocacy/partnership experience, health care providers, KT support personnel, and researchers, paired with an anonymous survey for family member without partnership experience, will gather data to describe the KT networks within and between groups and identify barriers and facilitators of network connections. Objective 2: Purposive sampling from Phase 1 will identify semi-structured interview participants with whom to examine conventional and network-driven KT barriers, facilitators, and mitigating strategies. Objective 3: Intervention mapping and a Delphi process will generate recommendations for network and conventional interventions to strengthen the network and facilitate KT. DISCUSSION: This study will integrate network and KT theory in mapping the structure of the CD&R KT network, enhance our understanding of conventional and network-focused KT barriers and facilitators, and provide recommendations to strengthen KT networks. Recommendations can be applied and tested within the field of CD&R to improve KT, with the aim of ensuring children achieve the best health outcomes possible through timely access to effective healthcare.

The Transformative Nature of Residential Immersive Life Skills Programs: Integrating Findings from a Five-Year Prospective Study of Program Opportunities, Youth Experiences, and Outcomes.

Youth with disabilities often experience limited opportunities to acquire the life skills needed in adulthood. As a result, life skills programs are provided to support life skill development; however, little is known about the active ingredients of these programs, and the sustainability of their effects over time. Accordingly, the aim was to synthesize the findings of a five-year study examining the opportunities, experiences, and outcomes of residential immersive life skills (RILS) programs for youth with disabilities. A multi-method prospective study was conducted involving 38 youth ages 14 to 21 with disabilities (e.g., cerebral palsy, spina bifida) attending one of three RILS programs held over three summers. Program opportunities, youth experiences, and outcomes (self-determination, self-efficacy) were assessed pre- and post-program and 3 and 12 months post-program using standardized questionnaires. Pre-program, 3-month, and 12-month follow-up interviews were held with youth and parents. This research synthesis integrates the findings from nine published articles that used a variety of qualitative, quantitative, and mixed methods approaches. RILS programs provided rich opportunities for youth to experience meaningful social connections, psychological engagement, and choice and control, which were associated with changes over time in multiple domains related to personal growth and preparation for adulthood. Overall, the findings point to the transformative power of RILS programs to propel new life directions for some youth. By creating opportunities for meaningful, challenging, and supportive experiences fulfilling basic needs for relatedness, competency, and autonomy, RILS programs motivate youth to grow and change. More study is needed of program opportunities and capacity-enhancing experiences, as well as longitudinal studies of youth life outcomes. RILS programs have appreciable value in preparing youth for the transition to adult roles and responsibilities.

Program factors influencing parents' engagement in a friendship-making intervention for youth with disabilities.

PURPOSE: The aim was to examine parents' experiences of engagement in a friendship-making intervention for youth with physical and developmental disabilities. METHOD: This mixed methods study used a convergent parallel design where quantitative and qualitative data were collected concurrently, analyzed independently, and then merged into an overall interpretation. Four parents completed the Pediatric Rehabilitation Intervention Measure of Engagement-Parent version at four points during the 8-week program. They also took part in post-intervention interviews about their engagement-related experiences, including their involvement, interest, and confidence in the parent sessions. RESULTS: Parents' engagement experiences were captured in four themes involving the person-intervention fit: the relevance of program content, the usefulness of the content, their behavioral involvement in planning and group discussions, and seeing youth experience success. The themes corroborated the quantitative measurement of engagement and illustrated and elaborated on how program factors influenced engagement. CONCLUSIONS: This study indicates the value of including a parent component in a youth friendship-making intervention, and points to the importance of considering relevance, usefulness, behavioral involvement, and success in designing these sessions. The four themes reflect important program factors that may be broadly relevant to the design of group-based interventions for parents of youth with disabilities.IMPLICATIONS FOR REHABILITATIONThe findings indicate the value of including a parent component in youth interventions.Parents are engaged when they feel programs are relevant and useful, are behaviorally involved, and see youth experience success-these factors should be considered in optimal program design.It is important to optimize parent engagement by personalizing content, such as by providing choices and options to increase relevance and decrease burden.Transparent communication about program content and the benefits experienced by other parents will help new parents be more fully informed about what to expect.

A Systematic Review to Identify Screening Tools and Practices that Can Be Used by Children's Rehabilitation Service Providers to Screen Parents' Mental Health.

BACKGROUND: Parents of children with disabilities often report stress, depression, and anxiety. This review identified screening tools and practices that pediatric rehabilitation service providers can use to screen the mental health of parents of children with disabilities. METHODS: An interdisciplinary team and patient partner completed the systematic review in which 16,015 articles were screened and 473 articles were included to i) identify mental health tools that were used with parents, ii) determine the clinical utility of frequently used tools, iii) examine the screening practices used in pediatric rehabilitation contexts. RESULTS: 115 screening tools were used to screen parents' mental health. The Parenting Stress Index was used most often. Seven studies reported screening in order to recommend further assessment or supports. Increased awareness, training, resources, and infrastructure are needed to support parents' mental health. DISCUSSION: Evidence is needed to guide mental health screening practices in pediatric rehabilitation and determine their effectiveness.

Bridging Pediatric and Adult Rehabilitation Services for Young Adults With Childhood-Onset Disabilities: Evaluation of the LIFEspan Model of Transitional Care.

Background: LIFEspan ("Living Independently and Fully Engaged") is a linked transition service model for youth and young adults with childhood-onset disabilities offered via an inter-agency partnership between two rehabilitation hospitals (one pediatric and one adult) in Toronto, Canada. Objective: The objective was to evaluate healthcare outcomes (continuity of care and healthcare utilization) for clients enrolled in LIFEspan. Methods: A prospective, longitudinal, observational mixed-method study design was used. The intervention group comprised youth with Acquired Brain Injury (ABI) and Cerebral Palsy (CP) enrolled in LIFEspan. A prospective comparison group comprised youth with Spina Bifida (SB) who received standard care. A retrospective comparison group comprised historical, disability-matched clients (with ABI and CP) discharged prior to model introduction. Medical charts were audited to determine continuity of care, i.e., whether study participants had at least one visit to an adult provider within 1 year post-discharge from the pediatric hospital. Secondary outcomes related to healthcare utilization were obtained from population-based, health service administrative datasets. Data were collected over a 3-year period: 2 years pre and 1 year post pediatric discharge. Rates were estimated per person-year. Fisher's Exact Test was used to examine differences between groups on the primary outcome, while repeated measures GEE Poisson regression was used to estimate rate ratios (post vs. pre) with 95% confidence intervals for the secondary outcomes. Results: Prospective enrolment comprised 30 ABI, 48 CP, and 21 SB participants. Retrospective enrolment comprised 15 ABI and 18 CP participants. LIFEspan participants demonstrated significantly greater continuity of care (45% had engagement with adult services in the year following discharge at 18 years), compared to the prospective SB group (14%). Healthcare utilization data were inconsistent with no significant changes in frequency of physician office visits, emergency department visits, or hospitalizations for clients enrolled in LIFEspan in the year following discharge, compared to the 2 years prior to discharge. Conclusion: Introduction of the LIFEspan model increased continuity of care, with successful transfer from pediatric to adult services for clients enrolled. Data on longer-term follow-up are recommended for greater understanding of the degree of adult engagement and influence of LIFEspan on healthcare utilization following transfer.

Prioritizing a Research Agenda of Transitional Care Interventions for Childhood-Onset Disabilities.

Transitional care interventions have the potential to optimize continuity of care, improve health outcomes and enhance quality of life for adolescents and young adults living with chronic childhood-onset disabilities, including neurodevelopmental disorders, as they transition to adult health and social care services. The paucity of research in this area poses challenges in identifying and implementing interventions for research, evaluation and implementation. The purpose of this project was to advance this research agenda by identifying the transitional care interventions from the scientific literature and prioritize interventions for study. A modified-Delphi approach involving two rounds of online surveys followed by a face-to-face consensus meeting with knowledge users, researchers and clinician experts in transitional care (n = 19) was used. A subsequent virtual meeting concluded the formulation of next steps. Experts rated 16 categories of interventions, derived from a systematic review, on importance, impact, and feasibility. Seven of the 16 interventions categories received a mean score rating of ≥7 (out of 10) on all three rating categories. Participants then rank ordered the reduced list of seven interventions in order of priority and the top four ranked interventions advanced for further discussion at a consensus meeting. Using the Template for Intervention Description and Replication (TIDieR) checklist as a guide, the participants identified that a study of a peer system navigator was worthy of future evaluation. This study highlighted that transitional care interventions are complex and multifaceted. However, the presence of a peer to support system navigation, advocacy and individual and family education was considered the most ideal intervention addressing the current gap in care. Future research, which aims to engage patients and families in a co-design approach, is recommended to further develop this intervention.

Are healthcare providers and young people talking about sexuality? A scoping review to characterize conversations and identify barriers.

BACKGROUND: Conversations about sexuality with healthcare providers (HCPs) are critical to youth's positive development, including youth with disabilities or chronic conditions. Yet, little is known about the characteristics of sexuality conversations with youth in healthcare settings. This scoping review examined the nature and extent of sexuality conversations between HCPs and youth (with and without a disability or chronic condition) and aimed to identify barriers to these conversations. METHODS: Scoping review methodology using rapid review principles was employed. INCLUSION CRITERIA: studies published between 2009 and 2019; examined conversations between HCPs and youth aged 21 and below; addressed sexuality; and took place in a healthcare setting. Study characteristics were described and clustered into thematic groups. RESULTS: Of the 5543 identified, 32 articles were included. Articles addressed (i) the content of sexuality conversations, (ii) prevalence of sexuality conversations and (iii) barriers to discussing sexuality. The content of sexuality discussions was largely biologically focused. The prevalence of sexuality discussions varied, with some discrepancy between youth-reported and HCP-reported rates. Seven barriers (three personal and four systemic) were identified. Youth with disabilities or chronic conditions were vastly under-represented in the published literature. CONCLUSIONS: This study highlighted that sexuality is an underexplored topic between HCPs and young people, especially young people with disabilities and/or chronic conditions. Given the importance of sexuality to young people's mental and physical health, research addressing barriers to these discussions and development of evidence-informed resources to support HCPs and youth to engage in conversations about sexuality should be a priority.

Current State of Knowledge on Digital Rectal Stimulation in Individuals With Traumatic and Nontraumatic Spinal Cord Injury: A Scoping Review.

OBJECTIVES: To map and characterize the nature of the evidence on the use of digital rectal stimulation for bowel management in individuals with spinal cord injury (SCI). DATA SOURCES: Five electronic databases were searched (ie, MEDLINE, EMBASE, CINAHL, Cochrane CENTRAL, and Cochrane Incontinence Group) from 1990 to November 2019. STUDY SELECTION: Articles that provided information on the use of digital rectal stimulation either alone or in combination with treatments were included. Title and abstract screening was split between 2 reviewers after reaching consensus on the first 100 studies screened. Full-texts were reviewed independently by 2 reviewers. Discrepancies were resolved by a third reviewer. DATA EXTRACTION: The data extraction form was developed by 2 reviewers and piloted. Data were extracted by one reviewer and checked for accuracy by a second reviewer. DATA SYNTHESIS: A total of 4841 studies were screened, including 425 full text articles; 33 articles were identified. Thirty-two studies focused solely on individuals with SCI and 1 study explored the experiences of caregivers of individuals with SCI. The majority of participants were aged between 30 and 59 years old. Most studies used quantitative methods (n=30, 91%). Fourteen of the studies (42%) were cross-sectional. Within experimental or quasiexperimental designs, digital rectal stimulation was commonly studied as an adjunct to other methods such as suppositories or enemas. Incontinence and defecation time were the most commonly examined outcomes. CONCLUSION: There were few studies found that focus on digital rectal stimulation. Further studies examining experience, effectiveness, complications, and long-term outcomes are warranted.

Parents' perceptions of the foundational and emergent benefits of residential immersive life skills programs for youth with disabilities.

PURPOSE: To examine parents' views of the benefits of residential immersive life skills programs for youth with disabilities. METHOD: Three- and 12-month post-session interviews were held with ten parents of youth with disabilities who had attended one of three residential immersive life skills programs in one of three years of data collection. A deductive thematic analysis was conducted to describe the types of benefits reported by parents. RESULTS: Parents discussed foundational benefits that were common to youth and more individualized emergent benefits. The foundational benefits included acquisition of life skills, greater awareness of future possibilities, and enhancements to self-confidence. The emergent benefits included greater comfort in new situations, and changes in motivation and initiative, maturity and responsibility, and community involvement. CONCLUSIONS: Parents reported diverse benefits from involvement in these youth transition programs. In the eyes of parents, these programs prepared youth for transition to adult roles by enhancing awareness of life possibilities, amplifying existing capacities, and accelerating growth in adaptability, motivation, and maturity, as well as community involvement. The findings indicate the utility of RILS programs, and can be used to explain the diverse effects of these programs to parents and youth contemplating enrollment.

Opportunities, experiences, and outcomes of residential immersive life skills programs for youth with disabilities.

PURPOSE: To examine the opportunities, experiences, and outcomes of a transition program for youth with disabilities. METHODS: Over three years, in a prospective study, 29 youth (17 males) attending residential immersive life skills programs reported on their experiences in 55 activity settings in which opportunities were also rated using standardized measures. Youth completed outcome measures of self-determination and self-efficacy pre-and post-intervention, and 3 and 12 months later. The alignment of opportunities and experiences was examined, as well as effects of experiences on outcomes. RESULTS: Opportunities were significantly correlated with experiences for males only. There were significant pre-post changes in autonomy (all youth) and self-efficacy (males only). Social and personal growth experiences predicted pre-post changes in autonomy, and experiences of psychological engagement (all youth) and choice and control (males only) predicted changes in psychological empowerment. CONCLUSIONS: The findings highlight the importance of designing transition programs to provide experiences of social interaction, personal growth, choice, and psychological engagement in order to enhance autonomy and empowerment. Further investigation is needed on how gender influences youth experiences. Context-mechanism-outcome linkages offer a useful frame to examine opportunities, experiences, and outcomes, and reveal multiple pathways to changes in youths' self-determination brought about by program involvement.Implications for rehabilitationResidential immersive life skills (RILS) programs enhance the autonomy and empowerment of youth with disabilities.The findings show the value of RILS programs and other complex interventions that provide youth of transition age with a rich variety of opportunities and capacity-enhancing experiences.It is important to intentionally design opportunities for social interaction, personal growth, choice, and psychological engagement.It is important to ensure youth are engaged with program content, and feel a sense of social belonging, choice, and personal growth, because these experiences were found to be related to changes in youths' autonomy and empowerment.Gender differences in program experiences and outcomes were found, which is an important and overlooked area of research.

Transitional Care Interventions for Youth With Disabilities: A Systematic Review.

CONTEXT: Transition from the pediatric to the adult health care system is a complex process that should include medical, psychosocial, educational, recreational, and vocational considerations. OBJECTIVE: In this systematic review, we aim to synthesize the evidence on transitional care interventions (TCIs) to improve the quality of life (QoL) for adolescents and young adults with childhood-onset disabilities, including neurodevelopmental disorders. DATA SOURCES: Four electronic databases (Medline, Embase, PsycINFO, and Cumulative Index to Nursing and Allied Health Literature) were searched. STUDY SELECTION: In the included studies, researchers examined TCIs for adolescents and young adults (12-24 years of age) with childhood-onset disabilities. Studies were experimental, quasi-experimental, and observational studies published in the last 26 years. DATA EXTRACTION: Two reviewers independently completed study screening, data extraction, and risk-of-bias assessment. RESULTS: Fifty-two studies were included. Five studies reported on QoL, but statistically significant improvements were noted in only 1 of these studies. Significant improvements were also found in secondary outcomes including disability-related knowledge and transitional readiness. TCIs targeted patients, families and/or caregivers, and health care providers and exhibited great heterogeneity in their characteristics and components. LIMITATIONS: Inconsistent reporting on interventions between studies hindered synthesis of the relationships between specific intervention characteristics and outcomes. CONCLUSIONS: Although there is limited evidence on the impact of TCIs on the QoL for youth with childhood-onset disabilities, there is indication that they can be effective in improving patient and provider outcomes. The initiation of transition-focused care at an early age may contribute to improved long-term health outcomes in this population.

Communication tools used in childhood obesity discussions: A scoping review.

BACKGROUND: Paediatric healthcare professionals (HCPs) play an essential role in the prevention and management of childhood obesity; however, many report considerable barriers to having weight-related conversations, including a lack of confidence. One way to address this is to use communication tools, such as charts, pictures and handouts. This scoping review's objective was to identify the extent and nature of available tools in the published literature that aimed to support HCPs in having positive weight-related conversations with children and families. METHODS: CINAHL, Medline and PsycINFO were systematically searched from 2005 to 2019. Articles were selected based on (a) use of an identified communication tool; (b) tool designed for use with children between the ages of 2 and 18 and/or their parents; (c) tool designed to be used in weight-related discussions; and (d) tool designed to be used by HCPs in a formal healthcare setting. RESULTS: Of the 3,596 articles yielded after deduplication, 13 unique communication tools were identified. Tools were grouped according to three themes: (a) help communicate child's weight status; (b) provide a communication framework for HCPs; and (c) actively engage children and/or parents in discussions. Many of the tools were recently developed and had not been evaluated in clinical practice. The clinical utility of each tool was evaluated. CONCLUSION: This study identified 13 communication tools HCPs could use when having weight-related discussions. However, there was a lack of evaluation and clinical utility. Only one tool had high clinical utility, and not all tools would be recommended for use in practice.

Building knowledge translation competency in a community-based hospital: a practice-informed curriculum for healthcare providers, researchers, and leadership.

BACKGROUND: Enacting knowledge translation (KT) in healthcare settings is a complex process that requires organizational facilitation. In addition to addressing organizational-level barriers, targeting individual-level factors such as KT competencies are a necessary component of this aim. While literature on KT competency training is rapidly growing, there has been little exploration of the potential benefits of training initiatives delivered from an intra-organizational perspective. Addressing this gap, we developed the Knowledge Translation Facilitator Network (KTFN) to meet the KT needs of individuals expected to use and produce knowledge (e.g., healthcare providers, research staff, managers, family advisors) within an academic health sciences center. The aim of this study is to describe the development, implementation, and evaluation of the KTFN curriculum. METHODS: An educational framework was used to guide creation of the KTFN curriculum. Stakeholder interviews, a literature review of KT competency, and environmental scan of capacity building initiatives plus adult learning principles were combined with in-house experience of KT practitioners to inform content and delivery. An evaluation strategy consisting of pre/post-test curriculum and post-session satisfaction surveys, as well as post-curriculum interviews assessed impact on participant knowledge and skills and captured perceived value of KFTN. RESULTS: The curriculum has been delivered three times over 3 years, with 30 individuals trained, representing healthcare providers, graduate level research trainees, managers, and family advisors. Using the New World Kirkpatrick Model as an analysis framework, we found that the KTFN curriculum was highly valued and shifted learners' perceptions of KT. Participants identified enhanced knowledge and skills that could be applied to different facets of their work; increased confidence in their ability to execute KT tasks; and intention to use the content in future projects. Barriers to future use included time to plan and conduct KT activities. CONCLUSION: KTFN was developed to enhance KT competency among organizational members. This initiative shows promise as a highly valued training program that meets both individual and organizational KT needs and speaks to the importance of investing in tailored KT competency initiatives as an essential building block to support moving evidence into practice.

From knowledge translation theory to practice: developing an evidence to care hub in a pediatric rehabilitation setting.

Purpose: Ensuring evidence-informed care happens systematically and consistently is not easy in complex health facilities. This paper describes the evolution of knowledge translation infrastructure (Evidence to Care) within a pediatric rehabilitation hospital to address barriers to evidence-informed decision-making and accelerate research uptake to influence clinical care.Methods: Development of Evidence to Care involved a series of steps integrating knowledge translation principles, best evidence and stakeholder needs. Key aspects included: recognizing health system drivers and organizational enablers; establishing organizational structures and processes; building and operationalizing a strategic vision through activities and demonstration projects; and evaluating impact.Results: By way of a fully realized working model, two large-scale demonstration projects aligned with the Knowledge-to-Action Cycle have been completed. Audit findings demonstrate tangible examples of improving healthcare quality through investment in knowledge translation resources, processes and tailored evidence products. Critical enablers of this infrastructure include strong leadership commitment and ongoing direction, a dedicated expert team, alignment with strategic priorities and situated within organizational structures to link research, clinical care and education.Conclusions: With a replicable model, Evidence to Care addresses established health system barriers related to time, resources, skill and knowledge through dedicated knowledge translation specialists and knowledge brokers to facilitate knowledge translation practice.Implications for rehabilitationDeveloping dedicated knowledge translation infrastructure is both novel and relatively new in healthcare.Sharing step by step processes helps other organizations learn from field-tested experiences of what works and what doesn't in a particular setting.Involving stakeholders at all levels of an organization is key to valuing knowledge translation and fostering an evidence-friendly culture.Co-creating tailored knowledge products and planning for dissemination and uptake fosters inter-disciplinary collaboration and joint problem-solving among clients, families and providers.