A New Process Model for Relationship-Centred Shared Decision-Making in Physical Medicine and Rehabilitation Settings.

INTRODUCTION: We present a relationship-centred shared-decision-making (RCSDM) process model to explicate factors that shape decision-making processes during physical medicine and rehabilitation (PMR) encounters among patients, their care partners and practitioners. Existing shared decision-making (SDM) models fall short in addressing the everyday decisions routinely made regarding persons with chronic disabilities who require high levels of support, their care partners and rehabilitation practitioners. In PMR, these everyday decisions are small scale, immediate and in service to a larger therapeutic goal. They can be thought of as micro-decisions and involve multiple practitioners, care partners and patients. How micro-decisions are made in this context is contingent on multiple roles and relationships among these relevant parties. Our model centres on micro-decisions among patients, their care partners and practitioners based on our disorders of consciousness (DoC) research. METHODS: To develop our model, we examined peer-reviewed literature in SDM in PMR, chronic disability and person-centeredness; formed collaborations and co-created our constructs with rehabilitation practitioners and with care partners who have lived experience of caring for persons with DoC; analysed emerging empirical data and vetted early versions with expert scientific and clinical audiences. Our model builds from the core tenets of relational autonomy, and scholarship and activism of disability advocates. FINDINGS: Our model conceptualizes four non-hierarchical levels of analysis to understand the process of micro-decision-making in chronic disability and medical rehabilitation: social forces (historical and sociological); roles and relationships (multiple and intersecting); relational dimensions (interactional and contextual) and micro-decision moments (initiation, response and closure). DISCUSSION: Relationships among patients, their care partners and practitioners are the intersubjective milieu within which decisions are made. Our conceptual model explicates the process of micro-decision-making in PMR. PATIENT OR PUBLIC CONTRIBUTION: Care partners (or caregivers) and rehabilitation practitioners are active members of our team. We work together to develop research projects, collect, analyse and disseminate data. The conceptual model we present in this manuscript was co-created-input from care partners and practitioners on previously collected data became the impetus to develop the RCSDM process model and share co-authorship in this manuscript.

Interventions for Social Participation for Autistic Adults (2013-2020).

Systematic Review Briefs provide a summary of the findings from systematic reviews developed in conjunction with the American Occupational Therapy Association's Evidence-Based Practice Program. Each Systematic Review Brief summarizes the evidence on a theme related to a systematic review topic. This Systematic Review Brief presents findings on social participation interventions and participation outcomes for autistic1 adults.

Interventions for Work/Employment Participation for Autistic Adults (2013-2020).

Systematic Review Briefs provide a summary of the findings from systematic reviews developed in conjunction with the American Occupational Therapy Association's Evidence-Based Practice Program. Each Systematic Review Brief summarizes the evidence on a theme related to a systematic review topic. This Systematic Review Brief presents findings on work/employment interventions and participation outcomes for autistic1 adults.

Expanding the Implementation of the Americans With Disabilities Act for Populations With Intellectual and Developmental Disabilities: The Role of Organization-Level Occupational Therapy Consultation.

The Americans With Disabilities Act (ADA) provides standards and guidance for accessibility and accommodations that remove barriers to facilitate community social participation for individuals with disabilities. However, ADA implementation does not yet fully address the diverse access needs of people with intellectual and developmental disabilities (IDD), who continue to face barriers to community social participation. This article explores the potential for occupational therapy practitioners to provide organization-level consultation as a means of maximizing community social participation among people with IDD. Case examples of occupational therapy practitioners working with community organizations are presented to illustrate organization-level consultation that addresses access needs across diverse community contexts. The relevance of supporting community social participation within the context of health equity is discussed, and key next steps, including developing population-based outcome measures, addressing reimbursement considerations, and developing best practices for organization-level consultation, are outlined.

Parents' experiences of caring for a child with autism spectrum disorder in the United States: A systematic review and metasynthesis of qualitative evidence.

INTRODUCTION: A comprehensive review to identify key topics and to discern patterns in the perspectives of parents of children with autism spectrum disorder (ASD) can improve understanding of the knowledge flow among stakeholders, thereby guiding future educational strategies. This systematic review and metasynthesis characterized the experiences of parents who have a child with ASD using qualitative studies in the literature. METHOD: A predefined search strategy across five databases was conducted in accordance with PRISMA guidelines. A metaaggregative approach was used to synthesize extracted data into themes that were condensed into overarching categories. RESULTS: Ten themes and nine groups of key stakeholders were identified across 12 studies. Themes were grouped into four categories: behaviors, socioemotional impacts, structural needs, and gaps in knowledge about ASD. Gaps in knowledge about ASD was a pervasive theme that played a critical role in interactions between stakeholders. Families of children with ASD make life adaptations in a variety of areas, including structuring activities around ASD, physical modifications to homes for safety, intentional social isolation, increased financial expenses, and homeschooling. DISCUSSION: Parents must educate themselves on how to manage all aspects of ASD, and in doing so, often become experts not only in the individual needs of their own child and families, but in ASD more broadly. Family experiences contextualize key stakeholder knowledge for application across multiple systems, including education and health care services, home, and the community. Educational interventions that integrate family, service provider, and community perspectives are needed to address the stakeholder gap in knowledge. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Community Conversations: Stakeholder-Identified Research Priorities to Foster Community Participation for Individuals With Intellectual and Developmental Disability.

To identify future research priorities and meaningful outcomes focused on community-level interventions for children and youth with intellectual and developmental disabilities and families, a group underrepresented in research, we established a diverse patient-centered outcomes research (PCOR) community. We focused on engaging regionally and nationally-diverse stakeholders-individuals, families, healthcare professionals, community, and policy experts-in research development activities that would build partnerships and research capacity. This community of stakeholders also represented the matrix of systems, services, and programs that people frequent in their communities (e.g., cultural arts, worship, sports and recreation, and transportation). We present the engagement process and methods for including individuals with intellectual and developmental disabilities as stakeholders in research planning and processes. The results of planning, completing, and evaluating three face-to-face research capacity-building meetings and their subsequent stakeholder engagement activities include: (1) individuals with intellectual and developmental disabilities and their families clearly expressed a desire to be included and to feel good about their participation in community settings, (2) many of our stakeholders wanted action and change to happen in their communities now, and often did not realize or understand that research takes time, (3) organizations expressed a need for mentoring related to best practices for access and inclusive programming. Overarching issues around societal inclusion, equal opportunities, and life chances for individuals with intellectual and developmental disabilities and their families were front and center across communities and multi-stakeholder groups, and achieving change remains valued and a high priority.

The complexities and synergies of engagement: an ethnographic study of engagement in outpatient pediatric rehabilitation sessions.

PURPOSE: To investigate client (youth/caregiver) and service provider engagement in outpatient pediatric rehabilitation therapy sessions. METHODS: In an ethnographic study, five research assistants attended 28 outpatient sessions, mostly delivered by occupational, physical, and speech-language therapists, and rated signs of client, provider, and relational engagement using the Pediatric Rehabilitation Intervention Measure of Engagement - Observation version. Post-session interviews were conducted individually with 13 youth, 15 caregivers, and 26 providers. RESULTS: Overall, there was a moderate to great extent of engagement. Provider engagement was rated as higher than client engagement, particularly in sessions with activities focusing on body structure/function. The interviews indicated associations among engagement-related constructs: (a) expectations influenced engagement/disengagement and therapy progress, (b) engagement was associated with positive affect and relationships, and (c) engagement was strongly associated with relationships and collaboration. CONCLUSIONS: Engagement is a central process within a complex system of psychosocial constructs operating in therapy. Engagement is emergent, synergistic, and change-inducing - it emanates from, involves, and influences multiple aspects of therapy. Notably, engagement ties two pivotal elements - positive expectations and positive affect - to positive relationships, collaboration, and therapy progress. Implications for practice include an understanding of how providers manage the therapeutic context and work to foster engagement.Implications for rehabilitationEngagement, and its various elements, plays a central role in shaping how clients, parents, and clinicians value therapeutic encounters.Optimal therapy is often thought to include engagement, relationships, and collaboration; the importance of therapy expectations, positive affect, and perceptions of progress are frequently overlooked.Engagement and motivation may be maximized when youth and caregivers are asked explicitly about how they view their engagement in therapy.In addition to clarifying and aligning expectations with youth and caregivers, service providers can enhance engagement and motivation by intentionally creating enjoyable and meaningful interactions, developing relationships, negotiating consensus on goals and plans, and demonstrating therapy progress.Service providers can harness engagement and the system of related constructs by listening and communicating effectively, by entering the world of the client and family, and by being aware of, anticipating, and responding to engagement and disengagement.

Perspectives of therapist's role in care coordination between medical and early intervention services.

This study explored perspectives of therapist's role in care coordination between early intervention (EI) and medical services, and identified strategies for improving service delivery. Fifty adults participated in one of six focus groups. Participants included parents, pediatricians, and therapists working in hospital and EI programs. Structured guiding questions were used to obtain participants' perceptions. Transcript analysis included open code identification, axial code grouping, and constant comparative methods. The researchers established inter-rater reliability (kappa = 0.85) in the coding scheme before data analysis. The themes identified included information exchange, communication among parents and therapists, approaches toward child and family care, supporting social and emotional needs, perceptions of therapists' roles, and understanding service delivery systems to improve care coordination. Participants recommended training for therapy service providers and pediatricians in the areas of child development, team building, and service systems. Family-centered strategies emphasizing systems of care are recommended to improve therapists' role in care coordination.

The Nature, Value, and Experience of Engagement in Pediatric Rehabilitation: Perspectives of Youth, Caregivers, and Service Providers.

Purpose: To conduct a qualitative investigation of engagement in pediatric rehabilitation therapy.Methods: Interviews were conducted with 10 youth, 10 caregivers, and 10 service providers. Transcripts were analyzed thematically using an inductive approach.Results: Themes illustrated three perspectives: engagement as a connection with components of the therapy process, engagement as working together, and engagement as an affective and motivational process. Engagement created valued connections with therapy components and forward momentum for therapy.Conclusions: The themes supported a view of engagement as complex, transactional, and multidimensional. Participants focused on different, yet not discrepant, aspects of engagement. Youth focused on having fun and personal connection with service providers. Caregivers provided a more complex perspective encompassing both their own and their child's engagement, with an emphasis on relationship, understanding what is taking place, and feeling valued in the process. Service providers highlighted goal attainment and the value of engagement in bringing about outcomes.

Service learning: meaningful, community-centered professional skill development for occupational therapy students.

The profession of Occupational Therapy advocates for new and emerging areas of practice that more fully embrace our moral responsibility to address significant social injustices that exist in our communities (Kronenberg, Algado, & Pollard, 2005). The service-learning pedagogy is impacted by the philosophical and theoretical influences of John Dewey, the mission and purpose of American higher education including Boyer's (1994) call for an engaged citizenry, and the social vision of occupational therapy. The pedagogy of service learning provides a natural context for students to experience community practice while contributing to reducing existing social injustices. This paper provides an overview of service learning (SL) as a philosophical and pedagogical approach in occupational therapy education, key processes in developing successful service learning experiences and community partnerships to support service learning. Characteristics of effective service learning, assessment of community and institutional outcomes of service learning and the scholarship of service learning are also discussed. Most importantly, strategies for developing service learning scholarship, an important but frequently neglected requisite to validate any educational practice, are delineated. The authors conclude that service learning provides educators with an opportunity to provide students with experiences in natural, community contexts while developing life-long commitment to civic engagement and social responsibility.

Achieving curricular themes through learner-centered teaching.

This paper focuses on the use of the four specific learner-centered teaching approaches: service-learning, learning through discussion, team-based learning, and a structured research course sequence in an occupational therapy curriculum. These methods are used to develop the four curriculum themes of engagement, critical thinking, innovations in practice, and clinical reasoning. The outcome of these approaches has been that students have taken more responsibility for their learning and shown increased maturity while promoting faculty creativity. Additionally, students have developed skills and interests in social and community engagement, and have sought jobs in community-based practice areas.