Social capital of families of children with neurodevelopmental disabilities in South India.

AIM: To investigate the social capital of families with children with neurodevelopmental disabilities in South India receiving a community-based early intervention (Enabling Inclusion®) program and to explore determinants and associations between social capital and program duration, socio-demographic factors, family empowerment, and caregiver burden. METHOD: Using purposive sampling in a cross-sectional study design, 217 families (n = 71 received short Enabling Inclusion [<5 months]; n = 146 received long Enabling Inclusion [>9 months]) were recruited and completed the Short Adapted Social Capital Tool (SASCAT: cognitive, structural), measures of family empowerment, and caregiver strain. Descriptive statistics, regression, and correlations were used for analyses. RESULTS: In 52.1% of participants, low cognitive and structural social capital was observed. Higher odds of low structural social capital were observed for mothers with primary versus secondary education (adjusted odds ratio [OR] = 0.35; 95% confidence interval [CI] 0.13-0.90; p = 0.029); and caregivers of children with cerebral palsy versus autism (OR = 4.66; 95% CI 1.02-21.21; p = 0.046). Significant associations were found between structural social capital, the child's age, and support group membership (χ2 = 6.29; 4.70; degrees of freedom [df] = 2; 1; p = 0.04; p = 0.02 respectively), as well as between cognitive social capital and other disability in the family (χ2 = 4.62, df = 1, p = 0.03). INTERPRETATION: While program duration was not found to mediate social capital, mother's education and child's diagnosis emerged as key influential factors, warranting their consideration in interventions supporting families of children with neurodevelopmental disabilities in low- and-middle-income countries and elsewhere.

Developing a Chatbot to Support Individuals With Neurodevelopmental Disorders: Tutorial.

Families of individuals with neurodevelopmental disabilities or differences (NDDs) often struggle to find reliable health information on the web. NDDs encompass various conditions affecting up to 14% of children in high-income countries, and most individuals present with complex phenotypes and related conditions. It is challenging for their families to develop literacy solely by searching information on the internet. While in-person coaching can enhance care, it is only available to a minority of those with NDDs. Chatbots, or computer programs that simulate conversation, have emerged in the commercial sector as useful tools for answering questions, but their use in health care remains limited. To address this challenge, the researchers developed a chatbot named CAMI (Coaching Assistant for Medical/Health Information) that can provide information about trusted resources covering core knowledge and services relevant to families of individuals with NDDs. The chatbot was developed, in collaboration with individuals with lived experience, to provide information about trusted resources covering core knowledge and services that may be of interest. The developers used the Django framework (Django Software Foundation) for the development and used a knowledge graph to depict the key entities in NDDs and their relationships to allow the chatbot to suggest web resources that may be related to the user queries. To identify NDD domain-specific entities from user input, a combination of standard sources (the Unified Medical Language System) and other entities were used which were identified by health professionals as well as collaborators. Although most entities were identified in the text, some were not captured in the system and therefore went undetected. Nonetheless, the chatbot was able to provide resources addressing most user queries related to NDDs. The researchers found that enriching the vocabulary with synonyms and lay language terms for specific subdomains enhanced entity detection. By using a data set of numerous individuals with NDDs, the researchers developed a knowledge graph that established meaningful connections between entities, allowing the chatbot to present related symptoms, diagnoses, and resources. To the researchers' knowledge, CAMI is the first chatbot to provide resources related to NDDs. Our work highlighted the importance of engaging end users to supplement standard generic ontologies to named entities for language recognition. It also demonstrates that complex medical and health-related information can be integrated using knowledge graphs and leveraging existing large datasets. This has multiple implications: generalizability to other health domains as well as reducing the need for experts and optimizing their input while keeping health care professionals in the loop. The researchers' work also shows how health and computer science domains need to collaborate to achieve the granularity needed to make chatbots truly useful and impactful.

Telerehabilitation for Children and Youth with Developmental Disabilities and Their Families: A Systematic Review.

AIM: To determine the level of evidence for the effectiveness of telerehabilitation against comparison interventions in improving child- and parent-related outcomes in children and youth with developmental disabilities. METHOD: A systematic approach, comprised of a comprehensive search; transparent study selection, data extraction, quality assessment by independent reviewers; and synthesis of sufficiently similar data (per diagnostic group, health profession, and overall level of evidence for each outcome) was undertaken. RESULTS: Fifty-five studies (29 randomized trials) were included across six diagnostic groups and ten health professions. Common telerehabilitation targets varied across diagnostic groups and included motor function, behavior, language, and parental self-efficacy. Telerehabilitation was found to be either more effective or as effective versus comparison intervention in improving 46.9% or 53.1% of outcomes, respectively. It was never found to be detrimental or less effective. Strong to moderate, limited, and insufficient levels of evidence were found for 36.5%, 24.5%, and 38.6% of the outcomes, respectively. CONCLUSION: There is sufficient evidence suggesting that telerehabilitation is a promising alternative when face-to-face care is limited. It is comparable to usual care and is more effective than no treatment. Blending in-person and telerehabilitation approaches could be beneficial for the post-pandemic future of rehabilitation in pediatric care.

Participación de los pacientes en una intervención de coaching en línea para padres de niños con retraso en el desarrollo.

OBJETIVO: Evaluar los procesos de participación de los pacientes en el desarrollo de una nueva intervención de coaching de salud para padres de niños con problemas de desarrollo emergentes. MÉTODO: Se utilizó un diseño de estudio transversal de método mixto. Los investigadores (n=18) y los padres-asesores (n=9) fueron encuestados utilizando la Herramienta de Evaluación del Compromiso Público y del Paciente (PPEET) en áreas de comunicación/apoyos para la participación, compartiendo puntos de vista/perspectivas, impactos/influencia de la iniciativa de compromiso, y pensamientos finales/satisfacción. Se utilizaron estadísticas descriptivas y resúmenes temáticos para analizar los datos. RESULTADOS: Para ambos grupos de estudio, en las cuatro secciones de la PPEET se observó un alto grado de acuerdo, con respuestas que variaban en gran medida entre 'estoy de acuerdo' y 'estoy muy de acuerdo'. Los informes cualitativos reflejaban que la participación de los pacientes era importante, significativa y tenía un impacto significativo en la calidad del proyecto y en el desarrollo profesional de los investigadores en su comprensión y uso de la metodología orientada al paciente. Los padres-asesores señalaron los problemas relacionados con la fijación de plazos realistas para proporcionar la retroalimentación y la falta de una representación más amplia entre los miembros. INTERPRETACIÓN: Se destacaron los beneficios y desafíos de aplicar estrategias orientadas al paciente a un ensayo multicéntrico. Estos se utilizarán para mejorar nuestros procesos de participación.

Patient engagement in an online coaching intervention for parents of children with suspected developmental delays.

AIM: To evaluate patient engagement processes in the development of a new health coaching intervention for parents of children with suspected developmental delays. METHOD: A cross-sectional mixed-method study design was used. Researchers (n=18) and patient-partners (n=9) were surveyed using the Public and Patient Engagement Evaluation Tool (PPEET) in areas of: (1) communication/supports for participation; (2) sharing views/perspectives; (3) impacts/influence of engagement initiative; and (4) final thoughts/satisfaction. Descriptive statistics and an inductive thematic-based approach were used to analyse the data. RESULTS: For both study groups, high agreement, with responses largely ranging between 'agree' to 'strongly agree', was noted on all four sections of the PPEET. Qualitative reports reflected that patient engagement was important, meaningful, and had a significant impact on the quality of the project and on the professional development of researchers in their understanding and use of patient-oriented methodology. Patient-partners noted challenges related to having realistic deadlines in providing feedback and a lack of a broader range of representation among members. INTERPRETATION: The benefits and challenges of applying patient-oriented strategies to a multicentre trial were highlighted. These will be used to enhance our engagement processes.

Visual perceptual deficits and their contribution to walking dysfunction in individuals with post-stroke visual neglect.

BACKGROUND: Unilateral spatial neglect (USN), a highly prevalent and disabling post-stroke deficit, severely affects functional mobility. Visual perceptual abilities (VPAs) are essential in activities involving mobility. However, whether and to what extent post-stroke USN affects VPAs and how they contribute to mobility impairments remains unclear. OBJECTIVES: To estimate the extent to which VPAs in left and right visual hemispaces are (1) affected in post-stroke USN; and (2) contribute to goal-directed locomotion. METHODS: Individuals with (USN+, n = 15) and without (USN-, n = 15) post-stroke USN and healthy controls (HC, n = 15) completed (1) psychophysical evaluation of contrast sensitivity, optic flow direction and coherence, and shape discrimination; and (2) goal-directed locomotion tasks. RESULTS: Higher discrimination thresholds were found for all VPAs in the USN+ group compared to USN- and HC groups (p < 0.05). Psychophysical tests showed high sensitivity in detecting deficits in individuals with a history of USN or with no USN on traditional assessments, and were found to be significantly correlated with goal-directed locomotor impairments. CONCLUSION: Deficits in VPAs may account for the functional difficulties experienced by individuals with post-stroke USN. Psychophysical tests used in the present study offer important advantages and can be implemented to enhance USN diagnostics and rehabilitation.

Health coaching for parents of children with developmental disabilities: a systematic review.

AIM: To determine the level of evidence on the effectiveness of health coaching for parents of children with disabilities. METHOD: A systematic review approach, comprised of a comprehensive, librarian-guided literature search; transparent study selection and data extraction; quality assessment; and synthesis of sufficiently similar data (per population, intervention nature, and overall level of evidence for each outcome using standard definitions) was undertaken. RESULTS: Twenty-eight studies (13 randomized clinical trials) were included. Three health coaching approaches were identified: child-targeted (most commonly applied), parent-targeted, and a mixed approach. Overall, there is an insufficient-to-limited level of evidence regarding the effectiveness of these approaches. INTERPRETATION: High-quality clinical trials using the parent-targeted coaching approach are warranted. WHAT THIS PAPER ADDS: Health coaching parents of children with disabilities is an emergent practice. Child-targeted, parent-targeted, or mixed health coaching approaches exist. The child-targeted health coaching approach is currently most applied. Parents of children with autism spectrum disorder are the most common recipients.

ENTRENAMIENTO EN SALUD PARA PADRES DE NIÑOS CON TRASTORNOS DEL DESARROLLO: UNA REVISIÓN SISTEMÁTICA: OBJETIVO: Determinar el nivel de evidencia sobre la efectividad del entrenamiento en salud "health coaching" para padres de niños con discapacidades. MÉTODO: Se llevó a cabo una revisión sistemática, usando una búsqueda bibliográfica exhaustiva guiada por bibliotecarios; con selección transparente de estudios y extracción de datos; evaluación de la calidad; y se realizó una síntesis, combinando los datos de estudio suficientemente similares (por población, naturaleza de intervención y nivel general de evidencia para cada resultado, utilizando definiciones estándar). RESULTADOS: Se incluyeron 28 estudios (13 ensayos clínicos aleatorios). Se identificaron tres enfoques de orientación de salud: orientado a los niños (más comúnmente aplicado), orientado a los padres y un enfoque mixto. En general, el nivel de evidencia que existe con respecto a la efectividad de estos enfoques es insuficiente a limitado. INTERPRETACIÓN: Son necesarios ensayos clínicos de alta calidad orientados a padres que utilizen el enfoque de entrenamiento en salud.

ORIENTAÇÃO EM SAÚDE PARA PAIS DE CRIANÇAS COM DEFICIÊNCIAS DO DESENVOLVIMENTO: UMA REVISÃO SISTEMÁTICA: OBJETIVO: Determinar o nível de evidência da efetividade da orientação em saúde para pais de crianças com deficiências. MÉTODO: Uma abordagem de revisão sistemática, contendo uma compreensiva busca literária com auxílio de bibliotecário; seleção de estudos e extração dados transparentes; avaliação de qualidade; e síntese de dados suficientemente similares (por população, natureza da intervenção, e nível geral de evidência para cada resultado usando definições padronizadas) foi realizada. RESULTADOS: Vinte e oito estudos (13 ensaios clínicos randomizados) foram incluídos. Três abordagens de orientação em saúde foram identificadas: voltadas para a criança (mais comumente aplicada), voltada para os pais, e abordagem mista. No geral, o nível de evidência é de insuficiente a limitado com relação à efetividade destas abordagens. INTERPRETAÇÃO: Ensaios clínicos de alta qualidade usando abordagens de orientação voltadas para os pais são necessários.

Post-stroke unilateral spatial neglect: virtual reality-based navigation and detection tasks reveal lateralized and non-lateralized deficits in tasks of varying perceptual and cognitive demands.

BACKGROUND: Unilateral spatial neglect (USN), a highly prevalent and disabling post-stroke impairment, has been shown to affect the recovery of locomotor and navigation skills needed for community mobility. We recently found that USN alters goal-directed locomotion in conditions of different cognitive/perceptual demands. However, sensorimotor post-stroke dysfunction (e.g. decreased walking speed) could have influenced the results. Analogous to a previously used goal-directed locomotor paradigm, a seated, joystick-driven navigation experiment, minimizing locomotor demands, was employed in individuals with and without post-stroke USN (USN+ and USN-, respectively) and healthy controls (HC). METHODS: Participants (n = 15 per group) performed a seated, joystick-driven navigation and detection time task to targets 7 m away at 0°, ±15°/30° in actual (visually-guided), remembered (memory-guided) and shifting (visually-guided with representational updating component) conditions while immersed in a 3D virtual reality environment. RESULTS: Greater end-point mediolateral errors to left-sided targets (remembered and shifting conditions) and overall lengthier onsets in reorientation strategy (shifting condition) were found for USN+ vs. USN- and vs. HC (p < 0.05). USN+ individuals mostly overshot left targets (- 15°/- 30°). Greater delays in detection time for target locations across the visual spectrum (left, middle and right) were found in USN+ vs. USN- and HC groups (p < 0.05). CONCLUSION: USN-related attentional-perceptual deficits alter navigation abilities in memory-guided and shifting conditions, independently of post-stroke locomotor deficits. Lateralized and non-lateralized deficits in object detection are found. The employed paradigm could be considered in the design and development of sensitive and functional assessment methods for neglect; thereby addressing the drawbacks of currently used traditional paper-and-pencil tools.

Virtual reality treatment and assessments for post-stroke unilateral spatial neglect: A systematic literature review.

Unilateral spatial neglect (USN) is a highly prevalent post-stroke deficit. Currently, there is no gold standard USN assessment which encompasses the heterogeneity of this disorder and that is sensitive to detect mild deficits. Similarly, there is a limited number of high quality studies suggesting that conventional USN treatments are effective in improving functional outcomes and reducing disability. Virtual reality (VR) provides enhanced methods for USN assessment and treatment. To establish best-practice recommendations with respect to its use, it is necessary to appraise the existing evidence. This systematic review aimed to identify and appraise existing VR-based USN assessments; and to determine whether VR is more effective than conventional therapy. Assessment tools were critically appraised using standard criteria. The methodological quality of the treatment trials was rated by two authors. The level of evidence according to stage of recovery was determined. Findings were compiled into a VR-based USN Assessment and Treatment Toolkit (VR-ATT). Twenty-three studies were identified. The proposed VR tools augmented the conventional assessment strategies. However, most studies lacked analysis of psychometric properties. There is limited evidence that VR is more effective than conventional therapy in improving USN symptoms in patients with stroke. It was concluded that VR-ATT could facilitate identification and decision-making as to the appropriateness of VR-based USN assessments and treatments across the continuum of stroke care, but more evidence is required on treatment effectiveness.

Exploring factors influencing occupational therapists' perception of patients' rehabilitation potential after acquired brain injury.

BACKGROUND/AIM: Clinical practice guidelines advocate for early involvement of rehabilitation professionals in screening acquired brain injury patients' rehabilitation needs and determining the required rehabilitation services. Little is yet known about the nature of occupational therapists' role in this context. This exploratory study sought to identify factors influencing occupational therapists' perception of acquired brain injury patients' rehabilitation potential for inpatient rehabilitation. METHODS: A qualitative approach was used to analyse data from a focus group involving 12 occupational therapists working in acute care and inpatient rehabilitation. A consensus-seeking technique was used to identify patient-related factors participants perceived as most important to consider when assessing rehabilitation potential. The transcription of the group discussion was analysed using an interpretive description approach to identify additional factors influencing occupational therapists' perception. RESULTS: Participants agreed on 11 patient-related factors most important to consider: age, behaviour, cognitive abilities, endurance, home environment, medical status, observed improvement in acute care post-injury, physical abilities, post-injury functional status, pre-injury functional status, patient and family expectations. Additional factors included the influence of the organisational context (i.e. acute care and broader health care context) as well as occupational therapists' professional expertise, knowledge of scientific evidence, concerns for ethical decisions and interpretive activities (i.e. clinician's interpretation of patients' characteristics in light of all other factors). CONCLUSIONS: Findings suggest that assessing rehabilitation potential is a complex process that goes beyond strictly appraising patients' characteristics. Additional factors influence clinicians' perception of patients' rehabilitation potential. Clinicians should pay more attention to these factors when making evidence-based decisions regarding patients' potential to benefit from rehabilitation.

Impact of post-stroke unilateral spatial neglect on goal-directed arm movements: systematic literature review.

BACKGROUND: Unilateral spatial neglect (USN), a highly prevalent post-stroke impairment, refers to one's inability to orient or respond to stimuli located in the contralesional visual hemispace. Unilateral spatial neglect has been shown to strongly affect motor performance in functional activities, including non-affected upper extremity (UE) movements. To date, our understanding of the effects of USN on goal-directed UE movements is limited and comparing performance of individuals post-stroke with and without USN is required. OBJECTIVE: To determine, in individuals with stroke, how does the presence of USN, in comparison to the absence of USN, impacts different types of goal-directed movements of the non-affected UE. METHODS: The present review approach consisted of a comprehensive literature search, an assessment of the quality of the selected studies and qualitative data analysis. RESULTS: A total of 20 studies of moderate to high quality were selected. The USN-specific impairments were found in tasks that required a perceptual, memory-guided or delayed actions, and fewer impairments were found in tasks that required an immediate action to a predefined target. CONCLUSION: The results indicate that USN contributes to deficits observed in action execution with the non-effected UE that requires greater perceptual demands.

Determining the barriers and facilitators to adopting best practices in the management of poststroke unilateral spatial neglect: results of a qualitative study.

BACKGROUND: A gap exists between best and actual management of poststroke unilateral spatial neglect (USN). Given the negative impact of USN on poststroke recovery, knowledge translation efforts are needed to optimize USN management. To date, no study has investigated the specific barriers and facilitators affecting USN management during the acute care process. OBJECTIVE: To identify the facilitators and barriers that affect evidence-based practice use by occupational therapists (the primary discipline managing USN) when treating individuals with acute poststroke USN. METHODS: Focus group methodology elicited information from 9 acute care occupational therapists. RESULTS: Key barriers identified included lack of basic evidence-based practice skills specific to USN treatment and personal motivation to change current practices and engrained habits. Key facilitators included the presence of a multidisciplinary stroke team, recent graduation, and an environment with access to learning time and resources. Synthesized Web-based learning was also seen as important to uptake of best practices. CONCLUSION: It is estimated that upwards of 40% of patients experience poststroke USN in the acute phase, and we have evidence of poor early management. This study identified several modifiable factors that prepare the ground for the creation and testing of a multimodal knowledge translation intervention aimed at improving clinicians' best practice management of poststroke USN.

Knowledge translation strategies used to promote evidence-based interventions for children with cerebral palsy: a scoping review.

BACKGROUND: Cerebral palsy (CP) is the most common childhood physical disability, imposing substantial costs on individuals and society. Early interventions that promote brain optimization and reorganization are vital for children with CP. Integrating early evidence-based practice (EBP) remains challenging but enhances functional outcomes. METHODS: Following a scoping review methodology, databases were searched to identify studies examining the impact of knowledge translation (KT) strategies for pediatric CP interventions. Extraction included study characteristics, methodology, KT strategies, barriers, and facilitators. Numerical and inductive content analysis identified themes among KT strategies. A final stakeholder consultation to discuss the results was conducted. RESULTS: This review included seventeen articles. Common outcomes included participant change in EBP knowledge and behaviour. Common barriers included a need for more resources, protected time, and funding. Most studies followed a multifaceted KT approach. Various KT strategies were used, primarily mentoring, workshops, case studies, and online tools. INTERPRETATION: Results underscored the need for tailored KT strategies for implementing EBP for children with CP. Additionally, user-friendly KT tools and involving mentors to facilitate the intervention can haste EBP uptake. Successful adoption depends on challenges in healthcare settings. This study provides insights into current KT strategies for advancing best practices for children with CP.

Employing multifaceted knowledge translation strategies in a pediatric rehabilitation setting can support the adoption of evidence-based practices for children with cerebral palsy.It is important to identify and address common barriers hindering the use of evidence-based practices in cerebral palsy rehabilitation in a specific context to tailor a knowledge translation strategy.Having qualified rehabilitation professionals act as evidence-based practice leaders in a healthcare setting is crucial for promoting evidence-based practices among other professionals.

Mental health in children with disabilities and their families: red flags, services' impact, facilitators, barriers, and proposed solutions.

Background: Children and youth with neurodevelopmental disabilities (NDDs) and their caregivers are at a high risk of experiencing mental health challenges, that in turn can significantly affect their functioning, productivity, and quality of life. In this already vulnerable population, mental health difficulties are now more frequently reported and pronounced secondary to the isolation and uncertainties experienced during the pandemic. Our previous work has shown important mental health services' gaps for children/youth with NDDs and their families, highlighting the need to optimize and tailor existing practices. Objective: To explore mental health services' barriers, facilitators, impact, and solutions from the perspectives of HCPs and CGs, and to describe common precursors to mental health challenges in children with NDDs from the perspectives of these two groups. Methods: In a triangulation mixed-method study design embedding quantitative and qualitative approaches, participants completed a survey and a semi-structured interview. Descriptive statistics and a hybrid inductive/deductive thematic approach were used for data analysis. Results: Over 700 utterances were analyzed (247 from caregivers [n = 10], 531 from clinicians [n = 16]) and included 143 and 173 statements related to the precursors and barriers/facilitators, respectively. Common precursors to mental health challenges (n = 7 categories) were identified and included reported feelings/perception of self, behavioral and physical manifestations, emotional dysregulation, and school-related factors, among others. Clinicians reported a widespread need for pediatric, family-centered mental health services and conveyed lacking mental health resources/training to meet the demand. Caregivers indicated being only moderately satisfied when care was received. Salient facilitators identified by clinicians were having an interdisciplinary team and caregiver's engagement in the therapeutic processes. Participants recommended improvements to increase accessibility to mediate the existing discrepancy between the emergence of precursors and care received; that services must target a broader population and be more comprehensive (e.g., family-centered care, addressing high-risk transition periods); and training/toolkits to support clinicians' evidence-based practice. Conclusion: Our findings emphasize the necessity of a systematic and standardized approach to mental health services for children with NDDs and their families. Enhancing caregiver support, addressing barriers, and adopting a proactive, family-centered approach are crucial for improving accessibility and quality. These proposed solutions provide valuable insights for shaping policies and practices in pediatric mental health services.

Resilience and adolescence-transition in youth with developmental disabilities and their families: a scoping review.

Background: Children with neurodevelopmental disabilities (NDDs, e.g., cerebral palsy) and their caregivers face lifelong and impactful challenges, particularly during life-transition periods such as adolescence. One's resilience emerges as an essential ability to navigate this vulnerable phase. Resilience is a complex concept that embeds multiple factors on various levels. Little is known about what resilience factors are pivotal in youth with NDDs and their families as they transition into adolescence and how these are addressed as part of existing targeted interventions. Objectives: This review explored the concept of resilience in youth with NDDs and their families. Specific aims included describing salient resilience factors in adolescents with NDDs and their families and to describe how resilience is addressed as part of targeted interventions. Methods: Using the Arskey and O'Malley framework, six steps were undertaken, including a comprehensive literature search (n = 5 databases), transparent study selection, detailed data extraction with a coding scheme (n = 46 factors), results' collating with numerical and inductive content analysis, and consultation with three key stakeholders. Results: The study screened 1,191 publications, selecting fifty-eight (n = 58; n = 52 observational and n = 6 intervention) studies. Findings revealed that resilience in this context is closely linked to more than forty factors across four levels (individual; family; school/peers; and community). Pivotal factors include social and emotional competence, optimism, and family/peer relationships. While existing interventions targeting resilience show promising results, few programs are available and generalizable to different NDDs. Stakeholders highlighted the importance of addressing resilience factors that are not targeted in existing interventions: caregivers' self-efficacy and self-esteem, as well as youth's and caregiver's confidence. Preferences for and advantages of online delivery for support programs and individual/group features also emerged. Conclusion: The review emphasizes the need for a holistic approach to support youth with NDDs and their families during adolescence transition. To enhance their resilience, recognizing caregivers' roles, customizing interventions, and exploring new implementation formats are avenues that align with the current evidence and opportunities for practical development in this field.

Lessons learned in measuring patient engagement in a Canada-wide childhood disability network.

BACKGROUND: The CHILD-BRIGHT Network, a pan-Canadian childhood disability research Network, is dedicated to patient-oriented research, where numerous stakeholders, including patient-partners, researchers, and clinicians are involved at different levels. The Network is committed to continuously improving the level of engagement and partnerships' impact. Measuring patient engagement is therefore important in reflecting on our practices and enhancing our approaches. We aimed to measure patient engagement longitudinally and explore in greater depth the perceived benefits, barriers and facilitators, and overall satisfaction with patient engagement, from the perspectives of the different stakeholders. METHODS: Patient engagement was measured using online surveys. In a longitudinal study design over a 3-years period (2018-2020) the Community-Based Participatory Research (CBPR) questionnaire was used. To enrich our understanding of patient engagement in Year 3, we employed the Public and Patient Engagement Evaluation Tool (PPEET) in a cross-sectional, convergent parallel mixed-method study design. Descriptive statistics and a thematic-based approach were used for data analysis. RESULTS: The CBPR questionnaire was completed by n = 167 (61.4% response rate), n = 92 (30.2% response rate), and n = 62 (14.2% response rate) Network members in Years 1, 2, and 3, respectively. Ninety-five (n = 95, 21.8% response rate) members completed the PPEET in Year 3. CBPR findings demonstrate a stable and high satisfaction level with patient engagement over time, where 94%, 86%, and 94% of stakeholders indicated that the project is a "true partnership" in Years 1, 2, and 3, respectively. In Years 2 and 3, we noted an improvement in patient-partners' comfort level in sharing their views and perspectives (92% and 91% vs. 74%). An increase in critical reflective trust (i.e., allowing for discussing and resolving mistakes) from Year 1 to 3 was found, both from the perspectives of patient-partners (51-65%) and researchers (48-75%). Using the PPEET, patient engagement factors (i.e., communications and supports for participation, ability to share views and perspectives) and impact were highly rated by most (80-100%) respondents. PPEET's qualitative responses revealed several patient engagement advantages (e.g., increased projects' relevance, enhanced knowledge translation), barriers (e.g., group homogeneity), facilitators (e.g., optimal communication strategies), and solutions to further improve patient engagement (e.g., provide clarity on goals). CONCLUSION: Our 3-years patient engagement evaluation journey demonstrated a consistent and high level of satisfaction with patient engagement within the Network and identified advantages, barriers, facilitators, and potential solutions. Improvements were observed in members' comfort in sharing their views and perspectives, along with an increase in critical reflective trust. These findings underscore the Network's commitment to enhancing patient engagement and provide valuable insights for continued improvement and optimization of collaborative efforts.

The CHILD-BRIGHT Network, a Canadian childhood disability research Network, is dedicated to patient-oriented research. It engages more than 300 diverse stakeholders, including patient-partners, researchers, and healthcare professionals. We conducted a 3-years study aimed to measure patient engagement over time and delve into the perceived benefits, barriers, and facilitators from the perspectives of the different members. We administered the Community-Based Participatory Research (CBPR) questionnaire in Years 1­3 (completed by 167, 92, and 62 members, respectively) and the Public and Patient Engagement Evaluation Tool (PPEET) in Year 3 (completed by 95 members). Through the CBPR, we identified in which research processes were Network members involved (e.g., defining the research question, results dissemination), appraised the partnership between researchers and other stakeholders such as patient-partners, and determined the type of trust in this partnership. The use of the PPEET allowed us to explore patient engagement impact and what factors facilitate and limit patient engagement (e.g., communication and supports). CBPR results showed a consistently high satisfaction level with patient engagement, with increased comfort among patient-partners in expressing their views over time, showcasing positive collaborative dynamics. Most stakeholders reported a "true partnership" in their engagement, indicating widespread belief in equitable relationships. Additionally, critical reflective trust, allowing for discussing and resolving mistakes in collaborative working activities, increased over the years, with the highest endorsement in Year 3, demonstrating growing trust among stakeholders. The PPEET findings showed positive ratings for communication, support, and impact of patient engagement. Its qualitative responses identified advantages (e.g., increased project relevance), barriers (e.g., lack of diversity in members' demographic characteristics), facilitators (e.g., effective communication), and suggested improvements (e.g., ensuring goal clarity). In conclusion, our project showed that the partnership between researchers and patient-partners was beneficial, satisfactory and evolved positively over time. The findings are encouraging provided the breadth of the Network, where hundreds of members are primarily connected virtually. We learned that: (1) It is possible to measure patient engagement in a large Network, both at one point in time and over time, and multiple tools can be used together to get a better picture. (2) Regular evaluations are important to optimize the partnership and its impact. (3) The partnership can be improved and strengthened with time through ongoing collaboration, open communication, and a commitment to address the evolving needs and dynamics of all stakeholders involved.

Evidence-based early rehabilitation for children with cerebral palsy: co-development of a multifaceted knowledge translation strategy for rehabilitation professionals.

Background: Cerebral palsy (CP) is the most common childhood physical disability. Early and evidence-based rehabilitation is essential for improving functional outcomes in children with CP. However, rehabilitation professionals face barriers to adopting evidence-based practices (EBP)s. The objective of this project is to develop a knowledge translation (KT) strategy to support CP-EBP among pediatric rehabilitation professionals. Methods: We follow an integrated KT approach by collaborating with clinician- and patient-partners. Partners engaged in co-design through team meetings and content review via email. The KT strategy comprises two components: (1) An electronic (e)-KT toolkit was created from summarized evidence extracted from randomized clinical trials on early rehabilitation for children with CP, and (2) a multifaceted online KT training program developed with guidance from a scoping review exploring effective KT strategies. Results: The e-KT toolkit summarizes twenty-two early interventions for children with or at risk for CP aged 0-5 years. Each module features an introduction, resources, parent/family section, and clinician information, including outcomes, intervention effectiveness, and evidence level. The KT training program includes three 10-15 min video-based training modules, text summaries, quizzes, and case studies. Site champions, identified as qualified rehabilitation professionals, were onboarded to support the site implementation of the training program. A champion-training booklet and 1-hour session were designed to equip them with the necessary knowledge/resources. Conclusion: The tailored, multifaceted, and co-designed KT strategy aims to be implemented in pediatric rehabilitation sites to support professional's uptake of CP-EBPs. Lessons learned from its development, including the co-development process and multifaceted nature, hold potential for broader applications in rehabilitation.

TelereHUB-CHILD: An online integrated knowledge translation tool to optimize telerehabilitation evidence-based practices for children with disabilities and their families.

Background: Pediatric telerehabilitation has been quickly adopted by clinicians during the pandemic. This precipitated shift in the model of healthcare delivery is significant and compounded by clinicians' training and knowledge needs related to evidence-based practices. This instigated a knowledge translation initiative TelereHUB-CHILD-an online platform designed for clinicians, patients, and families. The aim of this brief report is to describe its development, including the roles of key stakeholders in these processes. Methods: Following a systematic review on telerehabilitation, a series of co-creation activities with clinical (n = 24 rehabilitation professionals) and parent-partners (n = 4 parents of children with disabilities) were undertaken. Clinical partners were engaged in five web-activities. These were designed to gather their feedback regarding training and knowledge needs, present preliminary findings of the systematic review and explore their perceived importance and usefulness with respect to different sections of TelereHUB-CHILD, including Tele-treatments, Tele-Assessments, and Resources. Parent-partners were engaged asynchronously to provide feedback on the content and presentation of the Patient/Family Information section. Results: Clinical partners reported moderate-high usefulness and importance with each section of the tool and the presented features. As per partners' feedback, the Tele-treatments section provides standardized summaries outlining the effectiveness of the tele-treatment approach and the level of the evidence for each outcome of interest, according to the different diagnosis groups and professional discipline. For patients/family, common questions and answers can be explored in three user-friendly formats, including printable learning briefs, onsite accordions, and animation videos. The Tele-assessments section outlines existing measures by professional discipline. Resources offer preparatory forms for families and clinicians, questionnaires, and other learning material. Conclusion: TelereHUB-CHILD was co-developed with key stakeholders. It can guide telerehabilitation evidence-based practices, empower patients and families, and pinpoint research and practice gaps.