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.

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.

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.

Development of a virtual reality-based intervention for community walking post stroke: an integrated knowledge translation approach.

PURPOSE: To develop a virtual reality (VR) based intervention targeting community walking requirements. METHODS: Two focus groups each involving 7 clinicians allowed exploring optimal features, needed support and perceived favorable/unfavorable factors associated with the use of the VR-based intervention from the clinicians' perspective. Three stroke survivors and 2 clinicians further interacted with the intervention and filled questionnaires related to acceptability and favorable/unfavorable perceptions on the VR intervention. Stroke participants additionally rated their perceived effort (NASA Tax Load Index), presence (Slater-Usoh-Steed) and cybersickness (Simulator Sickness Questionnaire). RESULTS: Results identified optimal features (patient eligibility criteria, task complexity), needed support (training, human assistance), as well as favorable (cognitive stimulation, engagement, representativeness of therapeutic goals) and unfavorable factors (misalignment with a natural walking pattern, client suitability, generalization to real-life) associated with the intervention. Acceptability scores following the interaction with the tool were 28 and 42 (max 56) for clinicians and ranged from 43 to 52 for stroke participants. Stroke participants reported moderate perceptions of effort (range:20-33/max:60), high levels of presence (29-42/42) and minimal cybersickness (0-3/64). CONCLUSION: Findings collected in the early development phase of the VR intervention will allow addressing favorable/unfavorable factors and incorporating desired optimal features, prior to conducting effectiveness and implementation studies.

This study presents the development process of a new virtual reality (VR) intervention for community walking and participation in stroke survivors.Results from the focus group and hands-on pilot trial suggest that the VR intervention is feasible and accepted by clinicians and stroke survivors.Addressing favorable/unfavorable factors and incorporating features desired by clinicians in the development of the VR tool should promote its eventual implementation in clinical setting.

Mental health services and resources for children with developmental disabilities and their families: scan of local practices, gaps, and opportunities created.

Background: Mental health concerns in children with disabilities are common and have a significant and negative impact. Clinicians have reported high demand for this population to receive early, targeted, and family-centred mental health interventions. Objective: We sought to map out and describe existing pediatric mental health services/resources for children with disabilities and their families across clinical sites and local and online communities. Methods: Using a mixed-method triangulation study design, we outreached to clinical managers at the participating clinical sites and conducted a rapid online search of local in-person, telehealth, and web-based information. The nature, access method, admission criteria, target, focus, and other pertinent information were recorded and analyzed using descriptive statistics and a narrative synthesis approach. Results: Eighty-one (n = 81) services/resources (in-person, n = 48; telehealth, n = 10; web-based information, n = 33) were identified. Few (n = 6, 13%) in-person services had a method of care access through an online booking portal. Nearly half of in-person resources (n = 23, 47%) had admission criteria specific for children with disabilities (e.g., diagnosis, age limit), and many (n = 32, 67%) required a formal referral. A small number of in-person and telehealth services targeted the mental health concerns of the entire family (n = 23, 47%; n = 2, 20%). Very few (n = 13, 16%) services incorporated follow-up support. Important gaps emerged for certain populations (e.g., children with cerebral palsy). Practitioners' inadequate training when intervening with co-existing mental health demands of children with disabilities was noted by clinical managers. Conclusion: Findings could be used to create a user-friendly database to easily identify suitable services and to advocate for services/resources that are lacking.

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.

Exploring if and how evidence-based practice of occupational and physical therapists evolves over time: A longitudinal mixed methods national study.

BACKGROUND: Occupational therapists (OTs) and physiotherapists (PTs) are expected to provide evidence-based services to individuals living with disabilities. Despite the emphasis on evidence-based practice (EBP) by professional entry-level programs and professional bodies, little is known about their EBP competencies upon entry to practice and over time or what factors impact EBP use. The aim of the study was to measure and understand how EBP evolves over the first three years after graduation among Canadian OTs and PTs, and how individual and organizational factors impact the continuous use of EBP. METHODS: A longitudinal, mixed methods sequential explanatory study. We administered a survey questionnaire measuring six EBP constructs (knowledge, attitudes, confidence, resources, use of EBP and evidence-based activities) annually, followed by focus group discussions with a subset of survey participants. We performed group-based trajectory modeling to identify trajectories of EBP over time, and a content analysis of qualitative data guided by the Theoretical Domains Framework. RESULTS: Of 1700 graduates in 2016-2017, 257 (response rate = 15%) responded at baseline (T0) (i.e., at graduation), and 83 (retention rate = 32%), 75 (retention rate = 29%), and 74 (retention rate = 29%) participated at time point 1 (T1: one year into practice), time point 2 (T2: two years into practice, and time point 3 (T3: three years into practice) respectively. Group-based trajectory modeling showed four unique group trajectories for the use of EBP. Over 64% of participants (two trajectories) showed a decline in the use of EBP over time. Fifteen practitioners (7 OTs and 8 PTs) participated in the focus group discussions. Personal and peer experiences, client needs and expectations, and availability of resources were perceived to influence EBP the most. CONCLUSIONS: Though a decline in EBP may be concerning, it is unclear if this decline is clinically meaningful and whether professional expertise can offset such declines. Stakeholder-concerted efforts towards the common goal of promoting EBP in education, practice and policy are needed.

Pediatric tele-coaching fidelity evaluation: Feasibility, perceived satisfaction and usefulness of a new measure.

Background: To promote and ensure coaches' fidelity in delivering an online health coaching program to parents of children with suspected developmental delay, we developed and implemented a novel coaching fidelity rating tool, CO-FIDEL (COaches Fidelity in Intervention DELivery). We aimed to (1) Demonstrate CO-FIDEL's feasibility in evaluating coaches' fidelity and its change over time; and (2) Explore coaches' satisfaction with and usefulness of the tool. Methods: In an observational study design, coaches (n = 4) were assessed using the CO-FIDEL following each coaching session (n = 13-14 sessions/parent-participant) during the pilot phase of a large randomized clinical trial involving eleven (n = 11) parent-participants. Outcome measures included subsections' fidelity measures, overall coaching fidelity, and coaching fidelity changes over time analyzed using descriptive and non-parametric statistics. In addition, using a four-point Likert Scale and open-ended questions, coaches were surveyed on their satisfaction and preference levels, as well as facilitators, barriers, and impacts related to the use of CO-FIDEL. These were analyzed using descriptive statistics and content analysis. Results: One hundred and thirty-nine (n = 139) coaching sessions were evaluated with the CO-FIDEL. On average, overall fidelity was high (88.0 ± 6.3 to 99.5 ± 0.8%). Four coaching sessions were needed to achieve and maintain a ≥ 85.0% fidelity in all four sections of the tool. Two coaches showed significant improvements in their coaching skills over time in some of the CO-FIDEL sections (Coach B/Section 1/between parent-participant B1 and B3: 89.9 ± 4.6 vs. 98.5 ± 2.6, Z = -2.74, p = 0.00596; Coach C/Section 4/between parent-participant C1 and C2: 82.4 ± 7.5 vs. 89.1 ± 4.1, Z = -2.66; p = 0.00758), and in overall fidelity (Coach C, between parent-participant C1 and C2: 88.67 ± 6.32 vs. 94.53 ± 1.23, Z = -2.66; p = 0. 00758). Coaches mainly reported moderate-high satisfaction with and usefulness of the tool, and pointed out areas of improvement (e.g., ceiling effect, missing elements). Conclusions: A new tool ascertaining coaches' fidelity was developed, applied, and shown to be feasible. Future research should address the identified challenges and examine the psychometric properties of the CO-FIDEL.

Patient engagement in a national research network: barriers, facilitators, and impacts.

BACKGROUND: Little is known about patient engagement in the context of large teams or networks. Quantitative data from a larger sample of CHILD-BRIGHT Network members suggest that patient engagement was beneficial and meaningful. To extend our understanding of the barriers, facilitators, and impacts identified by patient-partners and researchers, we conducted this qualitative study. METHODS: Participants completed semi-structured interviews and were recruited from the CHILD-BRIGHT Research Network. A patient-oriented research (POR) approach informed by the SPOR Framework guided the study. The Guidance for Reporting Involvement of Patients and the Public (GRIPP2-SF) was used to report on involvement of patient-partners. The data were analyzed using a qualitative, content analysis approach. RESULTS: Twenty-five CHILD-BRIGHT Network members (48% patient-partners, 52% researchers) were interviewed on their engagement experiences in the Network's research projects and in network-wide activities. At the research project level, patient-partners and researchers reported similar barriers and facilitators to engagement. Barriers included communication challenges, factors specific to patient-partners, difficulty maintaining engagement over time, and difficulty achieving genuine collaboration. Facilitators included communication (e.g., open communication), factors specific to patient-partners (e.g., motivation), and factors such as respect and trust. At the Network level, patient-partners and researchers indicated that time constraints and asking too much of patient-partners were barriers to engagement. Both patient-partners and researchers indicated that communication (e.g., regular contacts) facilitated their engagement in the Network. Patient-partners also reported that researchers' characteristics (e.g., openness to feedback) and having a role within the Network facilitated their engagement. Researchers related that providing a variety of activities and establishing meaningful collaborations served as facilitators. In terms of impacts, study participants indicated that POR allowed for: (1) projects to be better aligned with patient-partners' priorities, (2) collaboration among researchers, patient-partners and families, (3) knowledge translation informed by patient-partner input, and (4) learning opportunities. CONCLUSION: Our findings provide evidence of the positive impacts of patient engagement and highlight factors that are important to consider in supporting engagement in large research teams or networks. Based on these findings and in collaboration with patient-partners, we have identified strategies for enhancing authentic engagement of patient-partners in these contexts.

This qualitative research paper seeks to understand patient engagement in large teams and networks. Patient engagement is the meaningful and active partnership of patients on a research team. We aim to understand the factors needed in a research environment that consider and include patients. Patient engagement was measured through interviews with 25 CHILD-BRIGHT Network members, either patient-partners or researchers, about their experiences. In this study, patient-partners were the parents of youth affected by brain-based disorders. We identified factors that made it easier or more difficult for patient-partners to engage with the projects and the network. Additionally, we looked at the impacts of patient engagement as observed by the interviewees. We found that at the project level and network level, the factors that helped engagement and made it difficult to engage were similar for both patient-partners and researchers. At the project level for example, open communication and factors specific to patient-partners (e.g., motivation to contribute) were identified by patient-partners and researchers as helping engagement. Maintaining long-term engagement and ensuring meaningful collaboration were identified as factors that make engagement difficult. At the network level, both patient-partners and researchers noted that communication (e.g., regular follow-cup) made it easier to engage while time constraints and asking too much from patient-partners made engagement more difficult. Finally, interviewees shared that patient engagement impacted patient-partners, researchers, and the research being conducted. Patient engagement helped ensure that the research reflected patient-partners' priorities, allowed collaboration, and provided patient-partners and researchers with learning opportunities. The results of our research have allowed us to identify strategies that can be used to create more meaningful engagement within large research teams.

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.

Identifying Potential Gamification Elements for A New Chatbot for Families With Neurodevelopmental Disorders: User-Centered Design Approach.

BACKGROUND: Chatbots have been increasingly considered for applications in the health care field. However, it remains unclear how a chatbot can assist users with complex health needs, such as parents of children with neurodevelopmental disorders (NDDs) who need ongoing support. Often, this population must deal with complex and overwhelming health information, which can make parents less likely to use a software that may be very helpful. An approach to enhance user engagement is incorporating game elements in nongame contexts, known as gamification. Gamification needs to be tailored to users; however, there has been no previous assessment of gamification use in chatbots for NDDs. OBJECTIVE: We sought to examine how gamification elements are perceived and whether their implementation in chatbots will be well received among parents of children with NDDs. We have discussed some elements in detail as the initial step of the project. METHODS: We performed a narrative literature review of gamification elements, specifically those used in health and education. Among the elements identified in the literature, our health and social science experts in NDDs prioritized five elements for in-depth discussion: goal setting, customization, rewards, social networking, and unlockable content. We used a qualitative approach, which included focus groups and interviews with parents of children with NDDs (N=21), to assess the acceptability of the potential implementation of these elements in an NDD-focused chatbot. Parents were asked about their opinions on the 5 elements and to rate them. Video and audio recordings were transcribed and summarized for emerging themes, using deductive and inductive thematic approaches. RESULTS: From the responses obtained from 21 participants, we identified three main themes: parents of children with NDDs were familiar with and had positive experiences with gamification; a specific element (goal setting) was important to all parents, whereas others (customization, rewards, and unlockable content) received mixed opinions; and the social networking element received positive feedback, but concerns about information accuracy were raised. CONCLUSIONS: We showed for the first time that parents of children with NDDs support gamification use in a chatbot for NDDs. Our study illustrates the need for a user-centered design in the medical domain and provides a foundation for researchers interested in developing chatbots for populations that are medically vulnerable. Future studies exploring wide range of gamification elements with large number of potential users are needed to understand the impact of gamification elements in enhancing knowledge mobilization.

Neurophysiological Changes Induced by Music-Supported Therapy for Recovering Upper Extremity Function after Stroke: A Case Series.

Music-supported therapy (MST) follows the best practice principles of stroke rehabilitation and has been proven to instigate meaningful enhancements in motor recovery post-stroke. The existing literature has established that the efficacy and specificity of MST relies on the reinforcement of auditory-motor functional connectivity in related brain networks. However, to date, no study has attempted to evaluate the underlying cortical network nodes that are key to the efficacy of MST post-stroke. In this case series, we evaluated changes in connectivity within the auditory-motor network and changes in upper extremity function following a 3-week intensive piano training in two stroke survivors presenting different levels of motor impairment. Connectivity was assessed pre- and post-training in the α- and the ß-bands within the auditory-motor network using magnetoencephalography while participants were passively listening to a standardized melody. Changes in manual dexterity, grip strength, movement coordination, and use of the upper extremity were also documented in both stroke survivors. After training, an increase in the clinical measures was accompanied by enhancements in connectivity between the auditory and motor network nodes for both the α- and the ß-bands, especially in the affected hemisphere. These neurophysiological changes associated with the positive effects of post-stroke MST on motor outcomes delineate a path for a larger scale clinical trial.

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.

Fathers Matter: Enhancing Healthcare Experiences Among Fathers of Children With Developmental Disabilities.

Background: Being a parent of a child with a developmental disability (DD; e. g., cerebral palsy, autism) comes with great challenges and apprehensions. Mothers and fathers of children with DD are experiencing heightened levels of psychological distress, physical health problems, financial difficulties, social isolation, and struggles with respect to traditional parenting roles. In relation to the latter, the involvement of fathers in caregiving in today's society is increasing and is highlighted by its importance and positive contribution to the development of their children. However, fathers of children with DD report feeling excluded and marginalized by healthcare providers (HCPs) when arranging for and getting involved in healthcare services for their children. Currently, there is limited evidence as to what factors influence those experiences. We aimed to explore barriers to and facilitators of positive and empowering healthcare experiences, from the perspectives of fathers of children with DD and HCPs. Methods: A mixed-method approach, such as quantitative (survey) and qualitative (semi-structured interview) strategies, was used. Participants were fathers of children with DD and HCPs working in childhood disability. Data analysis consisted of using descriptive statistics and an inductive-thematic analysis of emergent themes. Results: Fathers (n = 7) and HCPs (n = 13, 6 disciplines) participated. The fathers indicated that while they were moderate to very much satisfied with their interactions with HCPs, they reported that HCPs were only sometimes attentive to them during interactions. Fathers also revealed that positive interactions with HCPs in relation to their children had multiple benefits. Several themes related to barriers and facilitators of optimal interactions and parent-professional relationships emerged. These included session factors (time, attention), personal factors (knowledge of the condition, child and healthcare system, acceptance vs. denial, previous experiences, culture, stereotypes, pre-existing beliefs, stress levels, working schedule), and family dynamics. The participants offered several insights into the different strategies that can be implemented to promote optimal interactions between fathers and HCPs. Conclusion: We identified several barriers, facilitators, and improvement strategies for optimal interactions and enhanced parent-professional relationships from the perspectives of fathers and HCPs. These can be integrated by existing clinical settings in efforts to enhance current clinical practices and improve child- and parent-related outcomes.

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.

BRIGHT Coaching: A Randomized Controlled Trial on the Effectiveness of a Developmental Coach System to Empower Families of Children With Emerging Developmental Delay.

Background: In preschool-aged children with, or at elevated risk for, developmental disabilities, challenges and needs arise from vulnerabilities linked to critical and newly emerging cognitive, speech, motor, behavioral, and social skills. For families, this can be a stressful period as they witness the gradual unfolding of their child's differences and await to receive care. Nationally and internationally, service delivery models during this critical period are not standardized nor are they nimble or sufficient enough, leading to long wait times, service gaps and duplications. Given these struggles, there is a need to examine whether "health coaching", a structured educational program that is deliverable by different and more accessible means, can be effective in empowering families, by delivering information, providing social supports, and decreasing the demands on the overwhelmed health and developmental services. The primary objective is to evaluate the feasibility and the effectiveness of a coaching intervention (in comparison to usual and locally available care), for parents of children with emerging developmental delays. Method/Design: A multi-centered pragmatic randomized controlled trial design will be used. Families will be recruited from a representative sample of those awaiting publicly-funded regional child health services for children with developmental delays in four Canadian provinces. The target sample size is 392 families with children aged 1.5 to 4.5 years at recruitment date. Families will be randomly assigned to receive either the BRIGHT Coaching intervention (coach supported, hardcopy and online self-managed educational resources: 14 sessions, 2 sessions every 4 weeks for 6-9 months) or usual care that is locally available. In addition to the feasibility and acceptability measures, outcomes related to family empowerment, parental satisfaction and efficacy with caregiver competency will be evaluated at baseline, post-treatment (8 months), and follow-up (12 months). Discussion: This manuscript presents the background information, design, description of the interventions and of the protocol for the randomized controlled trial on the effectiveness of BRIGHT Coaching intervention for families of children with emerging developmental delays. Trial Registration: ClinicalTrials.gov, U.S. National Library of Medicine, National Institutes of Health #NCT03880383, 03/15/2019. Retrospectively registered.

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.