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Background: The Independent Living Movement seeks to promote independence for people living with disabilities by encouraging them to direct their own care. Programs exist that strive to teach individuals the necessary skills to live independently; however, these programs have not been widely researched. Purpose: The purpose of this paper is to explore alumni perceptions of a long-duration, immersive, independent living program and its influence on community independent living. Methods: Nine individuals who had previously attended the Gage Transition to Independent Living program in urban Toronto were interviewed to ascertain their perceptions on the program and how it assisted with independent community living, as well as their feedback for program improvement. Results: Most participants reported a positive impact from the program, and five main themes were developed: (i) referral source and expectations, (ii) perspectives of program and staff, (iii) navigating housing, (iv) benefits to transition and (v) recommendations for program improvement. Conclusions: Independent living skills education programs seem to have a positive impact on the participants who complete them. Further research should target direct comparisons of program models and effect on quality of life as measured by validated constructs. Incorporating a life skills component for individuals with physical disabilities can improve their transition to independent living. Skills such as self-advocacy, directing attendant services, and completing instrumental activities of daily living are found to be the most efficacious components taught within an independent living skills program. Greater awareness of independent living skills educational programs are needed amongst healthcare professionals to inform individuals who could benefit from such interventions. [ABSTRACT FROM AUTHOR]

Purpose:To describe the development and implementation of an organizational framework for client and family-centered research. Method:Case report. Results:While patient-centered care is now well established, patient-centered research remains underdeveloped. This is particularly true at the organizational level (e.g., hospital based research institutes). In this paper we describe the development of an organizational framework for client and family centered research at Holland Bloorview Kids Rehabilitation Hospital in Toronto, Canada. Conclusion:It is our hope that, by sharing our framework other research institutions can learn from our experience and develop their own research patient/client/family engagement programs.Implications for rehabilitationFamily engagement in rehabilitation research•Rehabilitation research is crucial to the development and improvement of rehabilitative care.•The relevance, appropriateness, and accountability of research to patients, clients and families could be improved.•Engaging clients and families as partners in all aspects of the research process is one way to address this problem.•In this paper, we describe a framework for engaging clients and families in research at the organizational level. [ABSTRACT FROM PUBLISHER]

Purpose: The main objectives of this study were to learn from youths with intellectual and developmental disabilities about the ways their families were involved in their engagement in community life and to capture how they felt about such involvement. Method: The current study is a secondary analysis of a larger study, the Voices of Youths Research Project, framed by inclusive research methods. Thirty-eight semi-structured interviews that discussed perspectives on friendship, social inclusion, and quality of life from 20 participants (ages 13 to 24 years) were included in this paper. All interviews were video-recorded and coded using NVivo 10. Thematic analysis of the coded segments was guided by a constructivist grounded theory approach. Results: Three major themes emerged from the experiences of youths with intellectual and developmental disabilities on family involvement in their social and community engagement: (1) complex of supports and influences, (2) community engagement with and through family, and (3) points of tension. Conclusions: These thematic findings offer insights into the lived experiences of youths with intellectual and developmental disabilities about engagement in community life. These findings provide an understanding, outside of conventional schemas, of transition into young adulthood for these youths. Rehabilitation professionals often work with youths with intellectual and developmental disabilities who face barriers to reaching transition goals identified either by themselves or others. Family members' views that may focus on goals of maximizing functional independence and/or decreasing caregiver demands can often overshadow the goals or views of youths with intellectual and developmental disabilities themselves. Rehabilitation professionals should find ways to explore with youth their family's roles in engagement and belonging in community life so that they can link youths to appropriate community resources and plan optimal interventions/programs. Rehabilitation professionals need to be aware of and respond to points of tension that can emerge between youths with intellectual and developmental disabilities and their family during transition. [ABSTRACT FROM AUTHOR]

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. Developing 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. [ABSTRACT FROM AUTHOR]