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INTRODUCTION: The COVID-19 pandemic brought unprecedented challenges for youth with neurodevelopmental disabilities (NDD) and their families. Although health measures were implemented to contain the COVID-19 virus, they disrupted public service, profoundly impacting youth and their families' access to services. This study sought to better understand the perspectives and experiences of parents and caregivers of youth with NDD across Canada in accessing services and their mental health needs during the pandemic. METHOD: The study used a qualitative research design in which we interviewed 40 parents and caregivers across Canada. RESULTS: The results enabled us to understand the impact of service disruptions in significant areas of life, including health, education, employment, and risk mitigation. DISCUSSION: Policymakers must consider a disability-inclusive lens during public health emergency planning and response to reduce the disproportionate impacts faced by youth with NDD and their families.
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COVID-19 , Humanos , Adolescente , Pandemias , Canadá , Cuidadores/psicologia , PaisRESUMO
BACKGROUND: Children with Autism Spectrum Disorders (ASD) experience significantly higher prevalence of other mental disorders, which amplifies their need for overall support. The outbreak of novel coronavirus (COVID-19) resulted in restrictions and limited access to different services with great challenge for families and children with ASD. SUBJECTS AND METHODS: We used an electronic SurveyMonkey questionnaire to examine the experiences of 114 caregivers of children with ASD. We compared: (a) level of support by the child's school, changes in child behavior, and priority needs for families of ASD and ASD with comorbidities (ASD+) children, during pandemic, and (b) developmental history and diagnosis for ASD and ASD+ children before the pandemic. RESULTS: Our research shows significant behavioral difficulties in the population with ASD and ASD+ that arose in the field of altered living conditions and overall functioning during the COVID-19 pandemic. Statistically significant results comparing ASD to ASD+ children we found in area of getting additional help and support before the outbreak of the pandemic (47.1% vs 16.0%, p=0.002), as well as in worsening of sleep problems, statistically significant more common in children with ASD+ (ASD+ 47.7% vs. ASD 25.7%, p=0.046). CONCLUSIONS: Our findings can contribute to the faster development and implementation of protocols for dealing with situations such as pandemics, related to the vulnerable population of children with ASD and their caregivers.
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Transtorno do Espectro Autista , COVID-19 , Criança , Humanos , Transtorno do Espectro Autista/epidemiologia , COVID-19/epidemiologia , Pandemias , Cuidadores , Sérvia/epidemiologia , ComorbidadeRESUMO
OBJECTIVES: The objective of the review was to estimate the quality of systematic reviews on evidence-based practice measures across health care professions and identify differences between systematic reviews regarding approaches used to assess the adequacy of evidence-based practice measures and recommended measures. INTRODUCTION: Systematic reviews on the psychometric properties of evidence-based practice measures guide researchers, clinical managers, and educators in selecting an appropriate measure for use. The lack of psychometric standards specific to evidence-based practice measures, in addition to recent findings suggesting the low methodological quality of psychometric systematic reviews, calls into question the quality and methods of systematic reviews examining evidence-based practice measures. INCLUSION CRITERIA: We included systematic reviews that identified measures that assessed evidence-based practice as a whole or of constituent parts (eg, knowledge, attitudes, skills, behaviors), and described the psychometric evidence for any health care professional group irrespective of assessment context (education or clinical practice). METHODS: We searched five databases (MEDLINE, Embase, CINAHL, PsycINFO, and ERIC) on January 18, 2021. Two independent reviewers conducted screening, data extraction, and quality appraisal following the JBI approach. A narrative synthesis was performed. RESULTS: Ten systematic reviews, published between 2006 and 2020, were included and focused on the following groups: all health care professionals (nâ=â3), nurses (nâ=â2), occupational therapists (nâ=â2), physical therapists (nâ=â1), medical students (nâ=â1), and family medicine residents (nâ=â1). The overall quality of the systematic reviews was low: none of the reviews assessed the quality of primary studies or adhered to methodological guidelines, and only one registered a protocol. Reporting of psychometric evidence and measurement characteristics differed. While all the systematic reviews discussed internal consistency, feasibility was only addressed by three. Many approaches were used to assess the adequacy of measures, and five systematic reviews referenced tools. Criteria for the adequacy of individual properties and measures varied, but mainly followed standards for patient-reported outcome measures or the Standards of Educational and Psychological Testing. There were 204 unique measures identified across 10 reviews. One review explicitly recommended measures for occupational therapists, three reviews identified adequate measures for all health care professionals, and one review identified measures for medical students. The 27 measures deemed adequate by these five systematic reviews are described. CONCLUSIONS: Our results suggest a need to improve the overall methodological quality and reporting of systematic reviews on evidence-based practice measures to increase the trustworthiness of recommendations and allow comprehensive interpretation by end users. Risk of bias is common to all the included systematic reviews, as the quality of primary studies was not assessed. The diversity of tools and approaches used to evaluate the adequacy of evidence-based practice measures reflects tensions regarding the conceptualization of validity, suggesting a need to reflect on the most appropriate application of validity theory to evidence-based practice measures. SYSTEMATIC REVIEW REGISTRATION NUMBER: PROSPERO CRD42020160874.
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Prática Clínica Baseada em Evidências , Pessoal de Saúde , Humanos , Psicometria , Revisões Sistemáticas como AssuntoRESUMO
OBJECTIVE: The main objectives were to 1) search and map current disability awareness and training activities in Quebec, Canada, 2) collectively reflect on these practices, and 3) develop a five-year strategic plan. METHODS: We used an integrated knowledge translation approach whereby researchers and community partners were involved in all stages. This project consisted of two sequential phases: 1) an environmental scan (web review and interview) of current practices, and 2) a reflection process with an external expert-facilitator in social transformation. Outcome results and process data are reported. RESULTS: We identified 129 activities (71 training, 58 awareness) from 39 organizations (from 123 organizations initially invited). A wide range of characteristics were collected for each activity which allowed for the identification of gaps. The working group met seven times in one year to discuss results from phase 1 and co-create a five-year strategic plan. Main priorities are 1) the development of a methodology for measuring collective impact and 2) content synchronization of activities. CONCLUSION: Involvement of partners and researchers enabled a concerted and efficient approach to the development of a five-year strategic plan. PRACTICE IMPLICATIONS: A transition committee led by partners will ensure implementation and sustainability of the plan across the province.
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Pessoas com Deficiência , Inclusão Social , Canadá , Humanos , Quebeque , PesquisadoresRESUMO
BACKGROUND: A crowd-sourced Canadian platform that collects information across neurodevelopmental disabilities (NDDs) can (1) facilitate knowledge mobilization; (2) provide epidemiological data that can benefit knowledge, treatment, and advocacy; and (3) inform policy and resource allocation decisions. We obtained input from parents of children with NDDs about relevance and feasibility of questionnaire items as a first step to inform questionnaire development of a stakeholder-driven, national platform for data collection on children with NDDs. METHODS: A parent of a teenager with NDDs was a research partner on the project. Through four focus groups and using a guided discussion consensus process, 16 participants provided feedback on whether questionnaire items from existing instruments related to function and disability were feasible for parents to complete and important to include in the platform. Data were analysed using content analysis. RESULTS: Participants (1) indicated that questions about medical history, general health, body functioning, self-care, access to resources, and outcomes (e.g., quality of life) are important to include in the platform and are feasible for self-completion; (2) provided various suggestions for the questionnaire ranging from additional items to include, using non-medical language, and keeping completion time from 20 to 30 min; (3) identified incentives and knowing the purpose of the platform as strong motivators to platform participation; (4) spoke about the challenges of their caregiver experience including impact of caregiving on themselves and barriers to accessing services; and (5) highlighted the isolation experienced by their children. CONCLUSION: Through the focus groups, parent stakeholders contributed to questionnaire development and shared their caregiver experiences. Obtaining feedback from youths with NDDs and healthcare providers on the questionnaire is a next step to validating findings. Stakeholder engagement is fundamental to developing a platform that will inform research that is relevant to the needs of children with NDDs and their families.
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Pais , Qualidade de Vida , Adolescente , Canadá , Cuidadores , Criança , Humanos , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Social participation is a complex construct, thus different factors may facilitate or restrict engagement. Adolescents with Cerebral Palsy (CP) and their mothers often experience barriers in social participation. Therefore, they are frequently facing challenges in order to engage in meaningful activities, in different contexts. OBJECTIVE: We aimed at exploring the perspectives of mothers and adolescents with CP on their social participation. METHOD: This is a cross-sectional and exploratory study, with a qualitative design. Seven adolescents with CP, aged from 11 to17 years old and their mothers, participated in a semi-structured interview, in São Paulo, Brazil. Data from interviews were analyzed with the Collective Subject Discourse (CSD) technique. RESULTS: Mothers believed that their parenting practices contribute to the social participation of their children. Mothers revealed concerns about how to support the autonomy of their children and how to help them to establish meaningful and mature relationships. Adolescents with CP reported to engage in a range of social activities, with friends in different contexts, such as restaurants, cinema, concerts, parks and school. They also reported to appreciate social participation and to look for strategies in order to engage. CONCLUSIONS: This work can contribute to the understanding of social participation of adolescents with CP, under the perspective of these people and their mothers by allowing them to express their thoughts and voice their fears and limitations. Healthcare providers should adopt a lifespan approach to disabilities and recognize the unique challenges of adolescence in the life of both child and parents.
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Aims: This study aimed at gaining a deeper understanding of the environmental and socio-economic factors affecting participation outcomes in community and leisure activities for children with disabilities, as well as the trajectories of participation for these children to promote their health and guarantee their rights are respected.Methods: A participatory action research (PAR) approach and linear regression analysis were employed to identify contextual factors associated with the community participation of children with cerebral palsy (CP) living in Quebec, Canada. Stakeholders engaged through the entire research process supported the development of questionnaires, data collection, analysis and interpretation of results.Results: Neighborhood outings were ranked among the most practiced activities by children with CP. Only in a few cases (9%) did children participate in more than two types of activities outside of school. Factors limiting children's participation were predominantly extrinsic in origin, including financial burden and lack of information about existing opportunities.Conclusions: There is a serious need for communities and local governments to inform parents about available resources, programs and policies that can support their child's participation. Rehabilitation professionals could partner with stakeholders to inform the development of public policies that target the identified barriers and promote children's integration and fulfillment.
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Paralisia Cerebral , Crianças com Deficiência , Criança , Participação da Comunidade , Fatores Econômicos , Humanos , Atividades de Lazer , QuebequeRESUMO
PURPOSE: We completed a scoping review to: (1) identify strategies that have been used to engage hard-to-reach populations in childhood disability research, and (2) synthesize information as to whether and how these strategies were evaluated. METHODS: Systematic search of six electronic databases and grey literature to identify articles published in the last 10 years. Studies published in English, French, and Spanish reporting on strategies used to engage hard-to-reach populations in childhood disability research were eligible for inclusion. RESULTS: Out of 106 articles selected for full text review, 16 were included. Engagement was more common in earlier stages of research. The populations included in studies were children with disabilities and their parents. Engagement strategies were reported but rarely evaluated. Anecdotal outcomes of engagement were reported in 14/16 studies and included positive outcomes for the children and parents such as empowerment. The challenges with engagement included the increased time needed to engage children with disabilities or their parents. CONCLUSIONS: Our results can guide others who wish to engage a diverse group of children with disabilities and their parents in research. Research on how to engage other hard-to-reach populations within the childhood disability umbrella and evaluation of engagement strategies and outcomes is needed.IMPLICATIONS FOR REHABILITATION⢠Service providers should be concerned when the research informing their practices does not include families that represent their clients (e.g., families who are low income, Indigenous, ethnic minority, or LGBTQI parents of children with disabilities).⢠Strategies used to include children with disabilities in research, such as offering varied response methods that include story telling or photography, may also be used to promote participation in clinical services.⢠Service providers and teachers may have a role in facilitating the recruitment of 'hard-to-reach' families in research and advising researchers on methods to create a comfortable environment with accessible means of data collection for children with disabilities.
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Etnicidade , Grupos Minoritários , Coleta de Dados , Humanos , Pais , PobrezaRESUMO
BACKGROUND: While there is a growing body of literature supporting clinical decision-making for rehabilitation professionals, suboptimal use of evidence-based practices in that field persists. A strategic initiative that ensures the relevance of the research and its implementation in the context of rehabilitation could 1) help improve the coordination of knowledge translation (KT) research and 2) enhance the delivery of evidence-based rehabilitation services offered to patients with physical disabilities. This paper describes the process and methods used to develop a KT strategic initiative aimed at building capacity and coordinating KT research in physical rehabilitation and its strategic plan; it also reports the initial applications of the strategic plan implementation. METHODS: We used a 3-phase process consisting of an online environmental scan to identify the extent of KT research activities in physical rehabilitation in Quebec, Canada. Data from the environmental scan was used to develop a strategic plan that structures KT research in physical rehabilitation. Seven external KT experts in health science reviewed the strategic plan for consistency and applicability. RESULTS: Sixty-four KT researchers were identified and classified according to the extent of their level of involvement in KT. Ninety-six research projects meeting eligibility criteria were funded by eight of the fourteen agencies and organizations searched. To address the identified gaps, a 5-year strategic plan was developed, containing a mission, a vision, four main goals, nine strategies and forty-two actions. CONCLUSION: Such initiatives can help guide researchers and relevant key stakeholders, to structure, organize and advance KT research in the field of rehabilitation. The strategies are being implemented progressively to meet the strategic initiative's mission and ultimately enhance users' rehabilitation services.
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Prática Clínica Baseada em Evidências , Pesquisa Translacional Biomédica , Canadá , Humanos , Quebeque , PesquisadoresRESUMO
BACKGROUND.: Public policy is an important feature of occupational therapy practice. Occupational therapy organizations have a mandate to engage in policy processes to improve the conditions for clients, including the nature of care received. PURPOSE.: Describe the approaches that Canadian occupational therapy organizations use to engage with and impact public policy. METHODS.: This study used interpretive description methodology. Participants were recruited from Canadian occupational therapy professional organizations. Participants shared their experiences and perspectives on policy engagement through semi-structured interviews. Data was analyzed inductively. FINDINGS.: Engagement with policy involved reaching out (building relationships, educating practitioners about policy and occupational therapy contributions, and developing statements), and reaching in (consulting with occupational therapists and generating data informing policy). IMPLICATIONS.: Occupational therapy organizations can share and coordinate approaches to impact public policy and advocate for both clients and the profession. Future research can expand this analysis in other contexts to generate a deeper understanding of engagement.
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Atitude do Pessoal de Saúde , Colaboração Intersetorial , Terapeutas Ocupacionais/psicologia , Terapia Ocupacional/organização & administração , Objetivos Organizacionais , Política Pública , Adulto , Canadá , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa QualitativaRESUMO
BACKGROUND: Children and adolescents with neurodevelopmental disabilities may be less well integrated into their community than their peers. Online groups can be particularly accessible for individuals with neurodevelopmental disabilities, as individuals may be able to connect with a larger network than they would in their local community. This systematic review aimed at estimating the effectiveness of online peer mentorship programmes on children and adolescent's participation in life situations. METHODS: A systematic review was conducted to search Medline, PsycINFO, Embase, CINAHL, and Education Research Complete (ERIC) electronic databases. Thematic analysis was done for studies that used qualitative methodology. RESULTS: Eleven articles were included, and they examined the influences of five different structured online peer mentorship intervention programmes and six different online support groups. The disabilities included cerebral palsy (n = 3), autism spectrum disorder (n = 3), spina bifida (n = 2), attention deficit hyperactivity disorder (n = 2), and other neurodevelopmental disorders. The mentors included in the studies were caregivers of children with disabilities, youth and adults with disabilities, and a virtual peer actor. The mentees included in the studies were youth with disabilities (age 10-19 years) and their families. Intervention characteristics varied across the studies but consistently showed a unique potential to facilitate social networking and support. Intervention programmes with specific content and structure showed better participation outcomes than unstructured interventions. Presence of a moderator and participant characteristics (age and sociocultural background) was suggested to influence the outcomes of interventions. CONCLUSIONS: Online peer mentorship programmes appear to have positive influence on social engagement and participation in life situation for children and adolescents with disabilities. This paper discusses several areas that should be considered in future research studies to improve potential effectiveness and use of study designs that help to establish not only if interventions work but also for whom they work best and why.
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Internet , Mentores , Transtornos do Neurodesenvolvimento/psicologia , Transtornos do Neurodesenvolvimento/terapia , Grupo Associado , Adolescente , Criança , Humanos , Comportamento Social , Participação Social , Adulto JovemRESUMO
INTRODUCTION: Robust evaluation of service models can improve the quality and efficiency of care while articulating the models for potential replication. Even though it is an essential part of learning health systems, evaluations that benchmark and sustain models serving adults with developmental disabilities are lacking, impeding pilot programs from becoming official care pathways. Here, we describe the development of a program evaluation for a specialized medical-dental community clinic serving adults with autism and intellectual disabilities in Montreal, Canada. METHOD: Using a Participatory Action-oriented approach, researchers and staff co-designed an evaluation for a primary care service for this population. We performed an evaluability assessment to identify the processes and outcomes that were feasible to capture and elicited perspectives at both clinical and health system levels. The RE-AIM framework was used to categorize and select tools to capture data elements that would inform practice at the clinic. RESULTS: We detail the process of conceptualizing the evaluation framework and operationalizing the domains using a mixed-methods approach. Our experience demonstrated (1) the utility of a comprehensive framework that captures contextual factors in addition to clinical outcomes, (2) the need for validated measures that are not cumbersome for everyday practice, (3) the importance of understanding the functional needs of the organization and building a sustainable data infrastructure that addresses those needs, and (4) the need to commit to an evolving, "living" evaluation in a dynamic health system. CONCLUSIONS: Evaluation employing rigorous patient-centered and systems-relevant metrics can help organizations effectively implement and continuously improve service models. Using an established framework and a collaborative approach provides an important blueprint for a program evaluation in a learning health system. This work provides insight into the process of integrating care for vulnerable populations with chronic conditions in health care systems and integrated knowledge generation processes between research and health systems.
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OBJECTIVE: Consistent with a national and global trend, prevalence estimates of autism have risen steadily in Quebec, causing concerns regarding quality and availability of diagnostic and intervention services as well as policies guiding service delivery and their efficacy. We conducted an analysis of Quebec's autism policies to determine recent advances, challenges and gaps in the planning and delivery of provincial autism services. METHODS: We identify autism policy priorities in Quebec through a comprehensive review and a thematic analysis of past and present policies, consider their compliance with national and international human rights and health frameworks and identify policy gaps. RESULTS: Autism policies articulated at a provincial level in Quebec are comprehensive, well grounded in international and national frameworks and considerate of existing barriers in the systems. Quebec policies reflect long-standing recognition of many barriers affecting service utilization and quality. Root cause of challenges currently confronting the policy environment in Quebec includes limitations in: specific measures to enhance a person-centred approach across the lifespan, evaluation of economic costs associated with autism, utilization of research evidence, and enactment of policies. CONCLUSION: Early intervention services, building capacity in existing resources through training programs, and integrating research through research translation initiatives can help the Québec government improve the quality and efficacy of services while reducing long-term costs to the systems and promoting quality of life for individuals with autism and their families.
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Transtorno Autístico , Política de Saúde , Humanos , QuebequeRESUMO
BACKGROUND.: Policy has direct bearing on occupational therapy practice and is a key dimension of the environment. To date, there has not been a synthesis of how policy is addressed in the occupational therapy literature. PURPOSE.: The purpose of this review is to identify and analyze the ways that policy is addressed in the occupational therapy literature. METHOD.: We conducted a scoping review of literature on policy and occupational therapy. Articles were analyzed deductively using a policy framework and inductively to identify overarching themes. FINDINGS.: Sixty-four papers were included for analysis. We present the descriptive information of the included articles according to policy type, sphere of action, stage of policy development, level, and actors. The qualitative analysis uncovered two broad concepts: "awareness" about the relationship between policy and practice and messages pertaining to "action." IMPLICATIONS.: There are numerous areas for further research into the policy-occupational therapy nexus, as policy has numerous pathways to shape practice. Practitioners will benefit from better understanding these pathways and actively engaging to align policy with the values of the profession.
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Política de Saúde , Terapia Ocupacional , Formulação de Políticas , Tomada de DecisõesRESUMO
Most research regarding youth with autism spectrum disorder has not focused on their first-person perspectives providing limited insight into methodologies best suited to eliciting their voices. We conducted a synthesis of methods previously used to obtain the first-person perspectives of youth with various disabilities, which may be applicable to youth with autism spectrum disorder. Two-hundred and eighty-four articles met the inclusion criteria of our scoping review. We identified six distinct primary methods (questionnaires, interviews, group discussion, narratives, diaries, and art) expressed through four communication output modalities (language, sign language and gestures, writing, and images). A group of parents who have children with autism spectrum disorder were then presented with a synthesis of results. This parent consultation was used to build on approaches identified in the literature. Parents identified barriers that may be encountered during participant engagement and provided insights on how best to conduct first-person research with youth with autism spectrum disorder. Based on our findings, we present a novel methodological framework to capture the perspectives of youth with various communication and cognitive abilities, while highlighting family, youth, and expert contributions.
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Transtorno do Espectro Autista , Comunicação , Coleta de Dados/métodos , Autorrelato , Adolescente , Arte , Criança , Pessoas com Deficiência , Grupos Focais , Gestos , Humanos , Entrevistas como Assunto , Idioma , Narração , Pais , Pesquisa Qualitativa , Língua de Sinais , Inquéritos e QuestionáriosRESUMO
Children with neurologic conditions benefit from international conventions, and national treaties, policies and regulations that safeguard their human rights. These regulations also exist to serve as guidance in the creation of comprehensive systems of care, inclusive environments, accessible societies and communities that allow these children to thrive and to achieve the best of their capacities. This narrative review of issues related to human rights and advocacy in pediatric neurologic disabilities will provide an overview of the human rights conventions that relate to children with disabilities, and the most current approaches implicating health care providers in rights promotion for these individuals and their families. We also suggest venues for professionals to advocate for their patients, and suggest strategies to consider rights-based approaches as a mean to provide holistic care in a social neurology framework.
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Serviços de Saúde da Criança , Deficiências do Desenvolvimento , Direitos Humanos , Doenças do Sistema Nervoso , Criança , Deficiências do Desenvolvimento/prevenção & controle , Direitos Humanos/legislação & jurisprudência , Direitos Humanos/psicologia , Humanos , Doenças do Sistema Nervoso/prevenção & controleRESUMO
BACKGROUND: Intensive upper extremity training (IUET) has demonstrated efficacy in clinical and functioning outcomes in children with hemiplegia. However, implementation in the clinical context requires novel service models and knowledge translation. AIMS: To map implementation of IUET in Canada, to identify factors associated with the implementation and best practices for implementation. METHODS: Mixed-methods design; descriptive statistics, chi-square tests. Individual phone interviews and focus groups with purposeful sampling. Thematic analysis; telephone surveys with managers of 31 pediatric rehabilitation centers across Canada. Four focus groups across Canada and one in the Netherlands. RESULTS: Implementation of IUET group interventions is limited in Canada (7/31). Barriers included beliefs and values related to evidence-based practice, opportunities for continuing education, researchers-clinicians partnerships, access to scientific literature, and the presence of a champion. Pressure from parents and media presenting IUET as a novel and effective therapy, support and flexibility of families, having the critical mass of clients and a managerial willingness to accommodate new ideas and restructure service provision were some facilitators. CONCLUSIONS: Uptake of the evidence requires many steps described in the knowledge translation cycle. Factors identified in the study could be considered in most clinical settings to facilitate the uptake of research evidence for IUET.
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Paralisia Cerebral/reabilitação , Conhecimentos, Atitudes e Prática em Saúde , Terapia Ocupacional/métodos , Extremidade Superior/fisiopatologia , Canadá , Criança , Pré-Escolar , Grupos Focais , Humanos , Países Baixos , Pesquisa Qualitativa , Centros de ReabilitaçãoRESUMO
PURPOSE: Advances in rehabilitation provide the infrastructure for research and clinical data to improve care and patient outcomes. However, gaps between research and practice are prevalent. Knowledge translation (KT) aims to decrease the gap between research and its clinical use. This special communication summarizes KT-related proceedings from the 2016 IV STEP conference, describes current KT in rehabilitation science, and provides suggestions for its application in clinical care. SUMMARY OF KEY POINTS: We propose a vision for rehabilitation clinical practice and research that includes the development, adaptation, and implementation of evidence-based practice recommendations, which will contribute to a learning health care system. A clinical research culture that supports this vision and methods to engage key stakeholders to innovate rehabilitation science and practice are described. CONCLUSIONS: Through implementation of this vision, we can lead an evolution in rehabilitation practice to ultimately prevent disabilities, predict better outcomes, exploit plasticity, and promote participation.
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Difusão de Inovações , Prática Clínica Baseada em Evidências/métodos , Reabilitação/métodos , Pesquisa Translacional Biomédica/métodos , HumanosRESUMO
BACKGROUND: Developmental Coordination Disorder (DCD) is a prevalent neurodevelopmental disorder. Best practices include raising parents' awareness and building capacity but few interventions incorporating these best practices are documented. OBJECTIVE: To examine whether an evidence-based online module can increase the perceived knowledge and skills of parents of children with DCD, and lead to behavioral changes when managing their child's health condition. METHODS: A mixed-methods, before-after design guided by the Theory of Planned Behavior was employed. Data about the knowledge, skills and behaviors of parents of children with DCD were collected using questionnaires prior to completing the module, immediately after, and three months later. Paired T-tests, sensitivity analyses and thematic analyses were performed on data as appropriate. RESULTS: One hundred-sixteen, 81 and 58 participants respectively completed the three questionnaires. For knowledge and skills, post- and follow-up scores were significantly higher than baseline scores (p < 0.01). Fifty-two (64%) participants reported an intention to change behavior post-intervention and 29 (50%) participants had tried recommended strategies at follow-up. Three themes emerged to describe parents' behavioral change: sharing information, trialing strategies and changing attitudes. Factors influencing parents' ability to implement these behavioral changes included clear recommendations, time, and 'right' attitude. Perceived outcomes associated with the parental behavioral changes involved improvement in well-being for the children at school, at home, and for the family as a whole. CONCLUSIONS: The online module increased parents' self-reported knowledge and skills in DCD management. Future research should explore its impacts on children's long-term outcomes.