Towards a paradigm shift in pediatric rehabilitation: accelerating the uptake of evidence on participation into routine clinical practice

Anaby, Dana; Khetani, Mary; Piškur, Barbara; Holst, Menno van der; Bedell, Gary; Schakel, F; Kloet, Arend de; Simeonsson, Rune J.; Imms, Christine

doi:10.1080/09638288.2021.1903102

Cited by 40 publications

(25 citation statements)

References 61 publications

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“…Young adults with CP may experience a range of impairments of body functions and structures, but if provided with appropriate supports, participation is possible in many aspects of life. There is good evidence that participation outcomes are influenced by interventions delivered in real-world contexts that are tailored to address the individual-context fit to provide the necessary supports to ensure that learning and engagement are effective ( 57 , 58 ).…”

Section: Discussionmentioning

confidence: 99%

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Social Outcomes of School Leavers With Cerebral Palsy Living in Victoria

et al. 2021

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Objective: In Australia, the National Disability Strategy provides a framework to guide actions and investment to achieve equity in social inclusion and economic participation for people with disability. We investigated the social outcomes of school leavers with cerebral palsy (CP) in Victoria, Australia and explored the determinants of desirable outcomes.Methods: We used the Victorian CP Register to invite all adults with CP aged 18–25 years (n = 649). On-line and/or paper-based surveys explored participation in education, employment, community activities, living situation, relationships and life satisfaction. Functional and health status data were collected. Social outcomes were summarized descriptively and compared between individuals with CP and non-disabled peers aged 18–25 years from the Household Income and Labor Dynamics in Australia dataset. Within the CP cohort we explored whether physical and mental health and level of functioning were associated with social outcomes. In addition, a descriptive comparison was undertaken between the social outcomes of the current CP cohort with that of a previously reported 2007 cohort.Results: Ninety participants (57% male; mean age 22.4 years (SD: 2.2) in 2020; 61.1% self-reported) provided data for analyses; response rate 16.9%. CP characteristics were similar between respondents and non-respondents. In comparison to similar aged peers, 79.8% had completed secondary school (compared to 83.2%); 32.6% (compared to 75.8%) were in paid work; 87.5% (compared to 48.2%) were living in their parental home; and 3.4% (compared to 31.6%) were married or partnered. Individuals with CP and higher levels of functional capacity and better physical health were more likely to undertake post-secondary education. Higher levels of functional capacity and physical health, as well as lower mental health status were associated with being employed.Conclusions: While foundational education completion rates were similar to non-disabled peers, significant gaps in social outcomes remain, including residence in the parental home and single status. While addressing these issues is challenging, substantial efforts are needed to reduce these disparities—work that needs to be done in collaboration with people with CP and their families.

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Section: Discussionmentioning

confidence: 99%

“…There is an ongoing need for attention to be given to supporting young people with CP to achieve meaningful participation. Using evidence already available to us ( 58 ), stronger pathways to employment ( 41 ) and community ( 38 ) participation can be built.…”

Section: Discussionmentioning

confidence: 99%

Social Outcomes of School Leavers With Cerebral Palsy Living in Victoria

et al. 2021

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“…33 Together, these EI stakeholders informed decisions about how and when to introduce the YC-PEM e-PRO option for inclusive service design toward meaningful EI outcomes, including their child's participation in valued activities. 34,35 For example, these EI stakeholders have shaped decisions to explore implementing the YC-PEM e-PRO as part of the child's service visit and annual evaluation of progress. 17,18,36 To date, EI stakeholders representing differing perspectives about information exchange during family-provider encounters 37 and at all levels of an EI organization (i.e., families, EI providers and service coordinators (SC), and PL) have been engaged to develop the YC-PEM e-PRO option (e.g., layout of the summary report) and select implementation strategies (e.g., research group infrastructure, timing of its implementation).…”

Section: Background and Significancementioning

confidence: 99%

Implementing an Electronic Patient-Reported Outcome and Decision Support Tool in Early Intervention

et al. 2023

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Objective The aim of the study is to identify and prioritize early intervention (EI) stakeholders' perspectives of supports and barriers to implementing the Young Children's Participation and Environment Measure (YC-PEM), an electronic patient-reported outcome (e-PRO) tool, for scaling its implementation across multiple local and state EI programs. Methods An explanatory sequential (quan > QUAL) mixed-methods study was conducted with EI families (n = 6), service coordinators (n = 9), and program leadership (n = 7). Semi-structured interviews and focus groups were used to share select quantitative pragmatic trial results (e.g., percentages for perceived helpfulness of implementation strategies) and elicit stakeholder perspectives to contextualize these results. Three study staff deductively coded transcripts to constructs in the Consolidated Framework for Implementation Research (CFIR). Data within CFIR constructs were inductively analyzed to generate themes that were rated by national early childhood advisors for their relevance to longer term implementation. Results All three stakeholder groups (i.e., families, service coordinators, program leadership) identified thematic supports and barriers across multiple constructs within each of four CFIR domains: (1) Six themes for “intervention characteristics,” (2) Six themes for “process,” (3) three themes for “inner setting,” and (4) four themes for “outer setting.” For example, all stakeholder groups described the value of the YC-PEM e-PRO in forging connections and eliciting meaningful information about family priorities for efficient service plan development (“intervention characteristics”). Stakeholders prioritized reaching families with diverse linguistic preferences and user navigation needs, further tailoring its interface with automated data capture and exchange processes (“process”); and fostering a positive implementation climate (“inner setting”). Service coordinators and program leadership further articulated the value of YC-PEM e-PRO results for improving EI access (“outer setting”). Conclusion Results demonstrate the YC-PEM e-PRO is an evidence-based intervention that is viable for implementation. Optimizations to its interface are needed before undertaking hybrid type-2 and 3 multisite trials to test these implementation strategies across state and local EI programs with electronic data capture capabilities and diverse levels of organizational readiness and resources for implementation.

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“…Given the hospital's status as an academic health science centre, the Strategy had both research and clinical goals. These joint goals reflected an integrated knowledge translation strategy, where program design and delivery are research-informed, and research findings and recommendations are readily translated into clinical practice (8,15).…”

Section: The Transition Strategymentioning

confidence: 99%

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

King

Bowman

Curran

et al. 2022

Front. Rehabilit. Sci.

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AimsThe 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.MethodsA 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 DiscussionTeam 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.ConclusionsThis 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.

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Towards a paradigm shift in pediatric rehabilitation: accelerating the uptake of evidence on participation into routine clinical practice

Cited by 40 publications

References 61 publications

Social Outcomes of School Leavers With Cerebral Palsy Living in Victoria

Social Outcomes of School Leavers With Cerebral Palsy Living in Victoria

Implementing an Electronic Patient-Reported Outcome and Decision Support Tool in Early Intervention

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

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