Illuminating their reality: the use of metaphor by parents of children with disabilities to express their experiences of health care.

PURPOSE: To explore the nature and meaning of metaphors used by parents of children with disabilities when describing their healthcare experiences. METHOD: A systematic procedure was used to identify and analyze metaphors spontaneously mentioned by parents in 13 focus groups held with 65 Canadian parents of children with disabilities. Attention was paid to identifying deep (i.e., meaningful) metaphors rather than common expressions. RESULTS: A total of 214 deep metaphors were identified and categorized into four target-source groupings. Parents used journey metaphors to describe experiences of uncertainty, conflict and harm metaphors to describe confrontational, harmful, and demeaning experiences of care, games and puzzles to describe the unknowns of care and attempts to resolve these unknowns, and metaphors concerning environmental barriers (i.e., walls and doors) to express feelings of exclusion and difficulties accessing care. CONCLUSIONS: Parents' metaphors expressed experiences of uncertainty, powerlessness, and attempts to exert agency in healthcare interactions. The metaphorical groupings provide new insights into how and why lack of family-centeredness in service delivery is bewildering, distressing, and disempowering to parents. Implications for service providers include paying attention to what metaphor use reveals about parents' experiences, and discussing parents' metaphors with them to create joint understanding, providing a fertile ground for collaboration.

Study findings indicated a clear lack of family-centeredness in gaining access to services, communicating with service providers and being listened to, and in decision-making power.Given that many service providers believe they are family-centered, the strong negative connotations of the metaphors used by parents are surprising and worrisome.Parents' use of metaphors not only reflects a lack of family-centered care, but indicates that parents experience unintentional harm in their interactions with service providers.Service providers can benefit from knowing the fundamental issues of uncertainty and power that underlie parents' use of metaphors to communicate vividly the tensions and issues they face.

Utilizing an Environmental Framework to Explore the Acceptability of a Health Promotion Program for Youth with Disabilities.

This study explored the acceptability of Children and Teens in Charge of their Health (CATCH), a program for children with spina bifida or cerebral palsy to enhance their physical activity and diet. Qualitative interviews were conducted with children (n = 6) and their parents (n = 6) who participated in CATCH. Analysis used an environmental systems framework. Microsystem factors impacting acceptability of the program were: Children's motivations for change, their age, and their physical health. Mesosystem factors were: Use of virtual coaching and the relationship between coach and child. Macrosystem factors (e.g. Covid-19), did not impact acceptability, but affected some goal attainment strategies. CATCH was broadly acceptable to children and parents and shows promise as a health promotion program tailored to children with disabilities. An environmental systems framework can potentially help other health promotion programs enhance their acceptability and success.

Family-centered service through the eyes of insiders: Healthcare providers who are parents speak about receiving and providing healthcare in child health.

BACKGROUND: When healthcare providers (HCPs) become patients, the experience affects their sense of identity, the care they receive, and their clinical practice. In child health, considerably less is known about the experiences of HCP-parents who access the pediatric healthcare system with their own children with disabilities and/or chronic medical conditions. AIMS: This study aimed to examine the experiences of HCPs who have children with disabilities to identify their experiences with healthcare delivery. METHODS AND PROCEDURES: A qualitative descriptive study was conducted with HCP-parents, using focus groups and open-ended interviews. Data were analyzed using reflexive thematic analysis. RESULTS: For HCP-parents, the experience of having a child with a disability affects how they see themselves, their patients, service organizations, and the healthcare system in general. Having medical knowledge and access to networks brings both benefits and unique challenges. HCP-parents also have unique needs that are not currently being addressed. The lived experiences of HCP-parents can contribute to improving patient care. However, the value of this lived experience is unrecognized and underutilized. CONCLUSIONS: The lived experiences of HCP-parents can contribute important insights regarding service delivery, and in particular regarding the application of Family-Centered Service.

Seeing the light versus being in the dark: parent, child, and service providers' use of metaphors to express system complexity, therapy engagement, and personal experiences of adaptation.

Purpose: To describe parent, child, and service providers' use of metaphors to communicate the meaning of participation in life and therapy engagement in the field of childhood disability.Methods: Metaphors concerning participation and engagement were extracted from 59 qualitative articles recommended by a group of experts in pediatric rehabilitation. A systematic process of metaphor analysis was used, involving identification of source and target domains, categorization into target-source groupings, and interpretation.Results: 209 metaphors were identified and categorized into seven target-source groupings. These seven groupings reflected environmental, interpersonal, and personal domains of experience: (a) the service system and life context, (b) the interpersonal therapy context, and (c) personal aspects. Together, the groupings expressed experiences concerning service system complexity, therapy engagement, and personal experiences of adaptation. Speakers used several metaphor dichotomies to express different experiences (e.g., open vs closed doors to opportunities).Conclusions: When service providers pay attention to clients' use of metaphors, this can lead to a deeper, more evocative understanding of the meaning of their participation and engagement experiences. Service providers can use metaphors generated by clients to communicate their understanding to clients, thereby creating a common ground for collaboration and assisting clients to interpret their experiences in different ways.Implications for RehabilitationMetaphors are useful clinically as they provide a bridge to joint understanding between a speaker and listener(s), due to their cognitive and communicative functionsService providers can note and attend to clients' use of metaphors to understand clients' experiences in deeper waysService providers can themselves use metaphors to express new ideas to clients, thereby encouraging clients to adopt new perspectives on their experiencesBy paralleling clients' use of metaphors, service providers can communicate that they understand clients' experience and provide them with a sense of support.

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.

What do parents want from healthcare services? Reports of parents' experiences with pediatric service delivery for their children with disabilities.

PURPOSE: Family-centred service (FCS) is an established approach for delivering services in children's rehabilitation and healthcare. This article describes that parents continue to report mixed experiences with healthcare services for their children, as well as their ideas about what they need and want from these services. These findings will inform the development of an up-to-date measure of Family-Centred Service called Measure of Processes of Care (MPOC 2.0). METHODS: A qualitative descriptive study was conducted with parents, using focus groups and open-ended interviews. Data were analyzed using inductive content analysis. RESULTS: Parents want care that is individualized, co-ordinated, easily accessible, and takes into account the entire family dynamic. They want service providers (SPs) to be informed and invested in their child's care, and to provide parents with practical assistance. They also want to be treated with respect, caring and empathy, and to work together with SPs on the care plan. Novel components of care not identified in the original FCS guiding principles include: responsiveness to needs and mental health; effective communication (vs information giving); practical support (in addition to emotional and informational support); and availability and scheduling. CONCLUSIONS: This article identifies components of healthcare that families find helpful and desirable.Implications for RehabilitationFamily-centred service (FCS) is an established approach for delivering services in children's rehabilitation and healthcare.However, parents continue to experiences aspects of care that are not family-centred.Parents of children with disabilities identified components of care that they want from healthcare services.New components of care that go beyond what was identified in the original measure of FCS (MPOC) include: effective communication (vs information giving); practical support (in addition to emotional and informational support); and availability and scheduling.

Interprofessional Team Conflict Resolution: A Critical Literature Review.

INTRODUCTION: Although concern related to conflicts within health care teams has been discussed in the literature, most studies have focused on individuals' personal conflict management style identification or on managers resolving workplace conflicts between parties. The purpose of this review was to identify significant components in the field of conflict with particular attention to conceptual findings that may be integrated into understanding interprofessional health care team conflict and its resolution. METHODS: A critical review of the conflict literature across many fields was undertaken using the method identified by Grant and Booth, incorporating literature-search, appraisal, synthesis, and analysis. RESULTS: This critical review explored existing models and schools of thought to provide an overview of how conflict is conceptualized, its focus on interpersonal and workplace issues, team conflict application and training in team conflict resolution, and finally a summary of this review's contribution to interprofessional health care team conflict and its resolution. CONCLUSIONS: Team conflict is comprised of three forms-relationship, task, and process. When team building occurs that incorporates training in the use of an adapted constructive controversy approach, there is a greater opportunity to enhance the quality of a cooperative approach to patients' care planning. Training in team conflict resolution is needed as a key ingredient to ensure all team members can enhance the effectiveness and quality of interprofessional client-centered collaborative practice. This benefits not only the health providers in the team, but also their clients/patients who are recipients of their shared teamwork.

Delivery and evaluation of simulations to promote authentic and meaningful engagement in childhood disability research.

BACKGROUND: In 2019, our interdisciplinary team of researchers, family members, and youth co-designed four simulation training videos and accompanying facilitation resources to prepare youth, family members, trainees, and researchers to build the knowledge and skills to engage in patient-oriented research (POR) authentically and meaningfully. Videos covered challenges in aspects of the research process including (1) forming a project team; (2) identifying project objectives and priorities; (3) agreeing on results; and (4) carrying out knowledge translation. METHODS: The purpose of the study was to deliver four simulation training videos across 2 two-hour facilitated workshops with researchers, trainees, and family partners. We evaluated whether the training videos and facilitated discussion of the simulations helped to improve knowledge and attitudes about authentic and meaningful partnership in research and self-perceived ability to engage in POR. An explanatory sequential two-phase mixed methods design was used. Phase 1 (quantitative) included two training workshops and a pre/post-training survey. Phase 2 (qualitative) included two qualitative focus groups. Results of each phase were analyzed separately and then combined during interpretation. RESULTS: Sixteen individuals (including researchers/research staff, trainees, family members, clinicians) took part in this research study. Overall, participants were highly receptive to the training, providing high scores on measures of acceptability, appropriateness, and feasibility. While the training videos and facilitated discussion of the simulations were found to increase participants' knowledge and ability to engage in authentic and meaningful POR, we found no significant change in attitude or intent. Recommendations about the simulation content and delivery were provided to inform for future use. CONCLUSIONS: The simulations were found to be a positive and impactful way for collaborative research teams to build knowledge and ability to engage in authentic and meaningful POR. Recommendations for future work include covering different content areas with varying levels of nuance; and offering the training to stakeholders in a variety of roles, such as those higher-ranked academic positions.

In 2019, our team of researchers, family members, and youth worked together to design and develop four digitally recorded simulation videos that can be used to train youth, caregivers/families, trainees, and researchers to engage with each other in research so that all parties feel supported and valued. This paper describes how the four simulation videos were packaged in the training and then delivered to 16 participants (researchers, trainees, and caregivers/families). We used multiple ways to evaluate the videos and training, including a survey before and after the training, focus groups with participants after the training, and written reflections shared by the training facilitators after the training was finished. We found that the simulation videos increased participants' knowledge on engagement and their self-reported ability to engage in authentic and meaningful patient-oriented research. Participants rated their belief in engagement and their intent to engage in collaborative research highly at the pre-test and this remained consistent at the post-test. Participants liked that the simulations focused on challenges in research engagement and that the training was offered to researchers and family partners together. They provided valuable feedback on what we should change about the simulations, including the content, which should have less exaggerated lessons and to add more topics. They also suggested it would be helpful if stakeholders other than just the research team complete the training in the future, especially those who are in higher positions of academic power.

Comparing three coaching approaches in pediatric rehabilitation: contexts, outcomes, and mechanisms.

PURPOSE: This Perspectives paper advances understanding of coaching in pediatric rehabilitation. We compare three coaching approaches designed for pediatric rehabilitation: Coping with and Caring for Infants with Special Needs (COPCA), Occupational Performance Coaching (OPC), and Solution-Focused Coaching in Pediatric Rehabilitation (SFC-peds). OBJECTIVES: Our objectives are to contrast the theory underpinning the approaches, discuss the evidence for outcomes and hypothesized mechanisms of change, consider the necessary mindsets of effective coaches, and propose directions for research and practice. SUMMARY: The coaching approaches have different theoretical bases and are designed for specific contexts, yet are similar in their mechanisms of change and intended outcomes. There is growing evidence of important effects of coaching on coachees' goal achievement, empowerment, and capacity building. Studies indicate that stakeholders value coaching, and provide a preliminary understanding of the mechanisms, including engagement and self-efficacy, by which coaching approaches support clients' self-directed and sustained change. Open, curious, and client-centered practitioner mindsets are fundamental to effective coaching. CONCLUSIONS: Coaching is a distinctive group of relational, goal-oriented, and evidence-based approaches that support goal achievement and empowerment. These approaches reflect and advance an ongoing paradigm shift in pediatric rehabilitation-a movement from therapist-as-expert approaches to those that build empowerment and capacity.Implications For RehabilitationCoaching is a distinctive group of theory-based approaches that support clients' goal achievement and empowerment, and build capacityCoaching practitioners are collaborative facilitators who assist clients and families with their own discovery of solutions that fit their everyday contextsThe evidence suggests that coaching triggers engagement and self-efficacy, which are the mechanisms by which changes in longer-term outcomes occurOpen, curious, and client/family-centered practitioner mindsets are fundamental to effective coaching.

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.

Programs Promoting Virtual Social Connections and Friendships for Youth with Disabilities: A Scoping Review.

AIMS: This scoping review explores what is known about programs that support youth with physical and developmental disabilities to create virtual social connections as a means toward friendships. METHODS: Peer-reviewed studies were searched in six electronic databases: CINAHL, EMBASE, ERIC, MEDLINE, PsycINFO, and Scopus. Two reviewers screened articles that described programs in which participants, ages 8-20, interacted with others online, and reported outcomes related to virtual social connections and friendships in their personal social networks. Data extraction involved program characteristics (e.g., duration, group members, online platform) plus qualitative description outlining access and participation experiences. RESULTS: After screening 12,605 articles, 9 were determined eligible. Programs followed two approaches: (1) training youth to use the internet and technology to access virtual spaces independently; and (2) designing virtual opportunities and activities that encourage youth interaction and collaboration. Each approach was grounded in the principles of fostering privacy and independence (i.e., socializing with peers without relying on caregivers), safety and self-expression (i.e., communicating authentically), plus confidence and capability (i.e., trying new skills). CONCLUSIONS: This scoping review provides guidance on enhancing access and participation of youth with disabilities in virtual spaces where they can develop social connections that increase chances for friendships.

Indicators of life success from the perspective of individuals with traumatic brain injury: a scoping review.

PURPOSE: The purpose was to synthesize qualitative literature and identify indicators of life success (positive life outcomes and experiences) that can help in understanding resiliency in the context of traumatic brain injury (TBI). METHODS: This scoping review involved searching nine online databases for population (TBI) and context (qualitative literature). Searches retrieved 42 852 articles and, after two-stage screening, 76 articles met the inclusion criteria of reporting indicators of life success from the perspective of individuals with TBI. RESULTS: Most studies were conducted in North America, Australia, or Europe. Participants were people living with TBI (mild to severe), of all age ranges. Positive life experiences were organized within four domains: understanding of oneself and one's life, social relationships and interaction, doing (engagement in activities, sense of control and accomplishment), and hope for the future. CONCLUSIONS: The positive life experiences reflect both processes and outcomes (indicators of success) and highlight the need for a multidimensional approach when seeking to understand resiliency following TBI. The transactional framework of life experiences can be applied in future TBI resiliency research to understand how individuals negotiate adversity through experiences promoting understanding of oneself and the world, social relationships, engagement in activity and hope. Implications for rehabilitationRehabilitation services should consider how to afford opportunities for engagement in activity, social interaction, meaning making (i.e., coming to new understandings), and hope.With respect to engaging in activity and social relationships, having social interaction, being understood, being active and productive, having autonomy, and having accomplishments, reflect important experiences to enable within rehabilitation services.Rehabilitation professionals should consider how providing opportunities for their clients to have positive life experiences may contribute toward an adaptive and empowered mindset.

Social participation interventions targeting relational outcomes for young people with physical and developmental disabilities: an umbrella review and narrative synthesis.

PURPOSE: To synthesize knowledge about social participation interventions targeting relational outcomes for young people with physical and developmental disabilities. METHOD: An umbrella review with a narrative synthesis was conducted to integrate findings of review articles examining social participation interventions targeting relational outcomes (e.g., peer interaction and friendships). Six databases were searched to identify reviews published between 2010 and 2021. RESULTS: Five reviews were identified, examining participation interventions, social/community integration interventions, recreational sport programs, online peer mentorship programs, and augmentative and alternative communication interventions to promote social interaction with peers. Interventions associated with improvements in relational outcomes included group-based programs, programs involving personalized goals, arts-based programs, and multi-component social communication interventions. Recommendations for future research included better description of interventions to identify active ingredients and key mechanisms, measurement of participants' experiences, and the need for interventions to be aligned with the nature of the outcomes examined. Preliminary intervention principles are proposed to guide the design of social participation interventions: individualizing, contextualizing, and immersion in social settings. CONCLUSIONS: There are multiple pathways by which to influence the relational outcomes of young people with disabilities. There are implications for the design of social participation interventions based on an ecological/experiential and relational perspective. IMPLICATIONS FOR REHABILITATIONImprovements in relational outcomes are associated with participation in group-based programs, programs involving personalized goals, arts-based programs, and multi-component social communication interventions.Three evidence-informed principles can help guide the design of social participation interventions: (1) personalizing, (2) contextualizing, and (3) immersion in social settings.Greater attention to aligning the nature of intervention with desired outcomes is needed to more effectively measure and promote relational outcomes.

"What their expectations could be": a narrative study of mothers and service providers in paediatric rehabilitation.

PURPOSE: To better understand and visualise how and why mothers' and service providers' expectations for therapy can change over time spanning their journeys and careers in the paediatric rehabilitation system. METHODS: Narrative analysis was used to construct two parallel collective stories that illustrate and explain phases and turning points of developing expectations. Five mothers and nine service providers participated in interviews discussing their expectations when new and more experienced with therapy. RESULTS: Each collective story had five chapters illustrating how expectations became more relational, controllable, and informed. For mothers, the chapters were: (1) expecting therapy to be a saviour; (2) being turned away and alone; (3) expecting to advocate from necessity; (4) finding new solutions in the environment; and (5) expecting to combine mother and service provider expertise. For service providers, the chapters were: (1) expecting to rescue and fix; (2) searching for an alternative sense of professional worth; (3) expecting to lose control; (4) being the authentic self before expected self; and (5) expecting the unexpected. CONCLUSIONS: Mothers' experiences with feeling alone and learning ways to modify their child's environments, and service providers' experiences with feeling inadequate and embracing authenticity, were essential to the developmental trajectories of expectations.Implications for Rehabilitation:Mapping expectations for therapy on a line graph shaped as a wave shows promise in reflecting the developmental trajectory of mothers' and service providers' expectations over time.Service providers should become aware of how to work with three distinct groups of mothers as determined by the phase of expectations for therapy they are currently experiencing (i.e., hyped, disillusioned, or enlightened).Therapy programmes can optimise expectations for therapy through redesigns that emphasise elements of networking, self-compassion, ethics, and authenticity.

Translation and psychometric properties of the German version of the "Interprofessional Socialization and Valuing Scale" (ISVS-21-D).

Understanding of the processes associated with socialization into collaborative work plays an important role in interprofessional education and collaborative practice. In order to evaluate changes in socialization toward interprofessional collaborative practice a measure is needed that captures professional beliefs, attitudes and behaviors of individuals in learning activities and in workplace practice. This article presents the translation and psychometric properties of the German Version of the Interprofessional Socialization and Valuing Scale (ISVS-21). Following translation from English to German, data of the German version of the questionnaire (ISVS-21-D) was collected in six different interprofessional education and practice settings amongst undergraduate students and health professionals. In total, 494 responses were analyzed. Results showed high reliability with Cronbach's alpha .90. Although not all fit indices are in the desired range, results give preliminary indication of the underlying single factor of the ISVS-21-D and suggest that the German version of the ISVS-21-D is a reliable instrument that can be used to measure interprofessional socialization in German health professionals and health care students as well as within other disciplines.

Negotiating expectations for therapy between mothers and service providers: a narrative analysis.

PURPOSE: To use stories about mothers and service providers negotiating expectations for therapy to illuminate processes contributing to power differences within partnerships. METHODS: This narrative study presented stories from three mothers and three service providers. Stories were co-constructed between participants and researchers and analyzed using narrative analysis. Building on An and Palisano's (2014) Model of Family-Professional Collaboration, stories were organized into the stages of goal setting, planning, and doing therapy. RESULTS: Each story illuminated a process unique to that story that can redistribute power between mothers, service providers, and therapy environments while negotiating expectations: protecting sacred issues, facilitating knowledge exposure, filling voids/vacuums, recognizing cultural conditioning, re-discovering eclipsed roles, and connecting relay teams. We propose including three additional strategies to An and Palisano's model to increase the readiness of mothers and service providers to negotiate expectations for therapy and collaborate fully as the model intends: 1) exploring power-sharing conversations; 2) looking for social context clues; and 3) adopting a humility stance. CONCLUSION: Information on the six illuminated processes can help structure a client story grounded in optimal negotiation of expectations and equal partnerships.Implications for RehabilitationKnowledge of diverse stories about mothers and service providers negotiating expectations for therapy can be a resource to guide actions in related situations.Leaving the topic of expectations for therapy implicit or unchallenged increases the risks that negotiations remain unbalanced and unproductive.Service providers may enhance collaboration with mothers in paediatric rehabilitation by exploring power-sharing conversations, looking for social context clues, and adopting a humility stance.

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.

A case study of a strategic initiative in pediatric rehabilitation transition services: An insiders' perspective on team principles and practices.

Aims: The aim was to describe an innovative initiative that took place in a pediatric rehabilitation hospital. The goal of this organization-wide strategic initiative, called the Transition Strategy, was to improve service delivery to children/youth with disabilities and their families at times of life transition. The research question was: What are the key elements that have contributed to the success of the Strategy, from the perspective of team members? The objectives were to describe: (a) the guiding principles underlying team functioning and team practices, (b) key enablers of positive team functioning, (c) the nature of effective team practices, and (d) lessons learned. Methods: A holistic descriptive case study was conducted, utilizing historical documents, tracked outcome data, and the experiences and insights of multidisciplinary team members (the authors). Reflecting an insiders' perspective, the impressions of team members were key sources of data. The perspectives of team members were used to generate key teamwork principles, enablers of team functioning, team practices, and key learnings. Findings and Discussion: Team members identified four guiding humanistic principles (respect, support, partnership, and open communication). These principles underpinned three novel practices that contributed to team effectiveness in the eyes of team members: supportive relational practices, human-centered co-design, and solution-focused communication. Key enablers were the relational style of leadership, and a team climate of innovation, autonomy, and trust, supported by the organizational vision. This team climate fostered a sense of psychological safety, thereby encouraging both experimentation and learning from failure. Conclusions: This article provides information for other healthcare organizations interested in understanding the Strategy's value and its implementation. It provides a practical example of how to adopt a humanistic approach to health care, leading to both innovative service development and thriving among team members.

Transitions Theatre: Creating a Research-Based Reader's Theatre With Disabled Youth and Their Families.

Transition to adult life can be a challenging time for disabled youth and their families. This article describes the collaborative creation of Transitions Theatre, a research-based reader's theatre activity based on narrative interviews with eight disabled youth (aged 17-22) and seven parents. Analysis of these interviews generated two opposing yet interrelated themes. On one hand, youth and families felt lost in transition facing multiple gaps in healthcare, financial support, education, and opportunities for social participation after having "aged out" of the pediatric system. On the other hand, they started cripping "normal" adulthood to envision more inclusive futures wherein disabilities are understood as integral to society. These two themes were transformed into two reader's theatre scripts, one featuring a youth, the other featuring a parent. Seven youth and four parents (six of them were original interview participants) then participated in a Transitions Theatre workshop to read the scripts together and discuss the authenticity and relatability of the scripts. Participant feedback suggested that the reader's theatre method was effective in sharing findings with research participants and stimulating a critical dialogue on how to (re)imagine transition to adulthood. We discuss the importance of implementing inclusive design strategies to make reader's theatre accessible to participants with diverse abilities and preferences.

Codesigning simulations and analyzing the process to ascertain principles of authentic and meaningful research engagement in childhood disability research.

BACKGROUND: Including youth with disabilities and their families as partners in childhood disability research is imperative but can be challenging to do in an authentic and meaningful way. Simulation allows individuals to learn in a controlled environment and provides an opportunity to try new approaches. The objectives of the research study were to (1) codesign a suite of simulations and facilitation resources and understand how stakeholders engaged in the codesign process; and (2) describe the principles of authentic and meaningful research engagement as identified by stakeholders. METHODS: Interdisciplinary stakeholder groups, including youth with disabilities, parents, researchers, and trainees, codesigned simulation training videos by developing shared storylines about challenges with research engagement that were then performed and digitally recorded with standardized patient actors. Two forms of data were collected: (1) observations via field notes and video recordings were analyzed to understand the codesign process; and (2) interviews were analyzed to understand principles of authentic and meaningful engagement. RESULTS: Four simulation training videos were developed, and topics included: (1) forming a project team; (2) identifying project objectives and priorities; (3) reviewing results; and (4) navigating concerns about knowledge translation. Thirteen participants participated in the simulation codesign; nine of whom consented to be observed in the codesign process and seven who completed follow up interviews. We identified two themes about authentic and meaningful engagement in research: (1) whether the invitation to engage on a project was authentic and meaningful or was extended to 'tick a box'; and (2) whether there were authentic and meaningful opportunities to contribute (e.g., valued contributions aligned with people's lived experience, skills, and interests) or if they only served as a 'rubber stamp'. Communication and expectations tied the 'tick box' and 'rubber stamp' themes together and underlie whether engagement was authentic and meaningful. CONCLUSIONS: For research engagement to be authentic and meaningful, researchers and families need to set clear expectations, build rapport, have tangible supports, use clear communication, and build time and space to work together. Future work will explore the utility of the simulations and whether they improve knowledge and attitudes about authentic and meaningful engagement in research.

Researchers, patients, and families who collaborate in childhood disability research can benefit from training on how to engage with each other authentically and meaningfully, i.e., where all parties feel supported and valued. We used a codesign approach to identify aspects of the research process where challenges might arise between researchers, patients, and families and then developed four videos with scenarios that mimic these challenges. Codesign is a collaborative approach in which different perspectives and relationships are prioritized while working to achieve a common aim. First, researchers, youth with disabilities, families, and trainees each identified challenges they had previously experienced in research engagement and used those to create one common scenario as the premise of each video. In follow up interviews, we asked a subset (7 people) of those who took part (13 people) about their experience in the co-design process and about what it means to engage in research where all parties feel supported and valued. Participants said that being invited to partner on research teams needed to be more than just a 'tick box' and even when invited onto research teams, they often lacked ways to contribute in a way where they felt valued. Engagement felt like a 'rubber stamp' when they were asked to contribute in a narrow way that did not align with the fullness of their lived experience, skills, and interests. Clear communication and mutual expectations were important for engagement to happen in a way that felt supportive and valuable. We suggest that researchers and families need to set clear expectations, build rapport, have tangible supports, use clear communication, and build time and space to work together.