"Filling in the gap": A qualitative case study about identity construction of siblings of youth with a neurodisability.

INTRODUCTION: In families of children with a neurodisability, siblings have unique experiences that can shape their identity. There is limited information about the developmental process of how siblings form their identity. This study aims to understand the identity construction of young siblings who have a sibling with a neurodisability. METHODS: As part of a patient-oriented research program, we engaged with our Sibling Youth Advisory Council in Canada. In this qualitative case study, data from semi-structured interviews augmented by photo elicitation and graphic elicitation of relational maps were analyzed using reflexive thematic analysis. RESULTS: Nineteen sibling participants (median age = 19 years, range = 14-33 years) reflected on the uniqueness of their role during childhood. During adolescence and emerging adulthood, they became closer with their sibling with a neurodisability and increased communication with their parents about how to care for their sibling with a neurodisability. These experiences influenced how they explored and began to reconcile their sibling identity with their professional and social identities. CONCLUSION: Siblings of youth with a neurodisability discover their unique identity and require support in this developmental process. Future interventions could evaluate how supports for siblings can have an impact on the positive development of their identity.

Being a sibling of a youth with a neurodisability: A qualitative study about the roles and responsibilities during the transition to adulthood.

BACKGROUND: During the transition to adulthood, a common challenge that youth with a neurodisability may experience is learning how to navigate services in the adult care system. During this transition youth may rely on their families, including siblings, for support. However, delineation of sibling roles and responsibilities during this transition period are unclear. This study aims to identify the roles and responsibilities that siblings perceive to have with their sibling with a neurodisability during the transition to adulthood, and describe the decision-making process of how siblings chose these roles. METHODS: In this descriptive qualitative case study, siblings were eligible to participate if they were between 14 to 40 years old, had a sibling between 14 to 21 years with a childhood-onset neurodisability and spoke English. Semi-structured interviews augmented by techniques of photo elicitation and relational maps were conducted. Reflexive thematic analysis was applied to identify sibling roles, as well as the emotional and decision-making process associated with these roles. Our team partnered with siblings with lived experience in all study phases. RESULTS: Nineteen participants (median age = 19 years, range = 14 to 33 years) from 16 unique families were interviewed. Six unique roles were described: friend, role model/mentor, protector, advocate, supporter, or caregiver. The emotions that siblings experienced with each role, also known as emotional responsibility, were categorized into levels of low, medium or high. Siblings also described a four-phase decision-making process for their roles: (1) acquiring knowledge; (2) preparing plans; (3) making adjustments; and (4) seeking support. Intrapersonal characteristics, including personal identity, values and experiences, influenced roles assumed by siblings. CONCLUSIONS: Siblings identified needing support as they process their decisions and emotional responsibility in their roles when their sibling with a neurodisability is transitioning to adulthood. Resources should be developed or further enhanced to support siblings.

Understanding the essential components and experiences of youth with autism spectrum disorders in peer mentorship programmes during the transition to adulthood: A qualitative meta-ethnography.

Youth with an autism spectrum disorder (ASD) often require additional supports during the period of transition to from high school to post-secondary education or career paths. Peer mentorship (PM) programmes create opportunities to support youth with ASD in identifying their personal, academic and career goals after graduating from high school; however, there is limited insight about the components of these programmes that are valued by both participants and peer mentors and that are perceived to contribute to the overall success of a programme in achieving their goals. Our objective was to identify, describe and synthesize the components of PM programmes valued by youth with ASD and their peer mentors, as well as to document their experiences in these transitional support services. A meta-ethnography was conducted to synthesize qualitative and mixed methods studies of PM programmes for youth with ASD. A systematic search of seven databases yielded 142 nonduplicate articles. Data analysis and synthesis involved (1) extraction of raw data; (2) extraction of study authors' interpretations, followed by inductive coding; (3) synthesis of key themes and (4) schematic diagram development to illustrate the relationship of themes. Ten studies of PM programmes from Canada (2), United States (4), Australia (3) and United Kingdom (1) were included. Extracted data reflected experiences of 131 mentees and 82 mentors. The essential programme components identified were (1) mentorship, (2) skill building, (3) peer group and (4) facilitating transition. PM characterized by clear communication and connection between mentors and mentees was valuable to the success of the programme. Peer mentors played an essential role to facilitate the positive experiences that mentees had with programme components, including interactions with peer groups. Successful PM programmes created a safe environment for mentees to practice skills and helped mentees gain confidence to expand their roles to take leadership in their learning.

Life course health development of individuals with neurodevelopmental conditions.

The life course health development (LCHD) model by Halfon et al. conceptualizes health development occurring through person-environment transactions that enable well-being and participation in desired social roles throughout life, areas that have not received adequate attention in healthcare. The aim of this 'perspectives' paper is to apply the six core tenets of the LCHD model and the concept of health development trajectories to individuals with lifelong neurodevelopmental conditions. We share the perspective that modifiable aspects of the environment often restrict health development; we then advocate that children, beginning at a young age, should engage in 'real-world' experiences that prepare them for current and future social roles. LCHD encourages future planning from the outset, continuity of care between pediatric and adult systems, and coordination of services and supports. We believe LCHD can be transformative in enabling healthy living of individuals with neurodevelopmental conditions.

Developing a classification system of social communication functioning of preschool children with autism spectrum disorder.

AIM: Impairments in social communication are the hallmark of autism spectrum disorder (ASD). Operationalizing 'severity' in ASD has been challenging; thus, stratifying by functioning has not been possible. The purpose of this study is to describe the development of the Autism Classification System of Functioning: Social Communication (ACSF:SC) and to evaluate its consistency within and between parent and professional ratings. METHOD: (1) ACSF:SC development based on focus groups and surveys involving parents, educators, and clinicians familiar with preschoolers with ASD; and (2) evaluation of the intra- and interrater agreement of the ACSF:SC using weighted kappa (кw ). RESULTS: Seventy-six participants were involved in the development process. Core characteristics of social communication were ascertained: communicative intent; communicative skills and reciprocity; and impact of environment. Five ACSF:SC levels were created and content-validated across participants. Best capacity and typical performance agreement ratings varied as follows: intrarater agreement on 41 children was кw =0.61 to 0.69 for parents, and кw =0.71 to 0.95 for professionals; interrater agreement between professionals was кw =0.47 to 0.61, and between parents and professionals was кw =0.33 to 0.53. INTERPRETATION: Perspectives from parents and professionals informed ACSF:SC development, providing common descriptions of the levels of everyday communicative abilities of children with ASD to complement the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. Rater agreement demonstrates that the ACSF:SC can be used with acceptable consistency compared with other functional classification systems.

Child-Focused and Context-Focused Behaviors of Physical and Occupational Therapists during Treatment of Young Children with Cerebral Palsy.

AIMS: To (1) describe the child- and context-focused behaviors of physical and occupational therapists, and (2) compare the behaviors of therapists in a standard therapy session with those of therapists trained to deliver child- and context-focused services. METHOD: Videos of 49 therapy sessions provided by 36 therapists were analyzed using the intervention domains of the Paediatric Rehabilitation Observational measure of Fidelity (PROF) to examine the therapeutic behaviors of physical and occupational therapists with young children with cerebral palsy (CP) (24 to 48 months) in a Dutch rehabilitation setting. The PROF ratings of 18 standard therapy sessions were compared with the ratings of 16 child- and 15 context-focused therapy sessions. RESULTS: Therapists who provided standard therapy demonstrated a mix of child- and context-focused behaviors. PROF ratings indicated fewer child- and context-focused behaviors during standard therapy sessions compared with sessions where therapists were instructed to use either child- or context-focused behaviors. CONCLUSIONS: A sample of Dutch physical and occupational therapists of young children with CP demonstrated a mix of child- and context-focused therapy behaviors during standard therapy. Further research is recommended on clinical reasoning and the effect of setting to better understand therapists' use of child- and context-focused behaviors during therapy sessions.

The Pediatric Autism Research Cohort (PARC) Study: protocol for a patient-oriented prospective study examining trajectories of functioning in children with autism.

INTRODUCTION: The developmentally variable nature of autism poses challenges in providing timely services tailored to a child's needs. Despite a recent focus on longitudinal research, priority-setting initiatives with stakeholders highlighted the importance of studying a child's day-to-day functioning and social determinants of health to inform clinical care. To address this, we are conducting a pragmatic multi-site, patient-oriented longitudinal investigation: the Pediatric Autism Research Cohort (PARC) Study. In young children (<7 years of age) newly diagnosed with autism, we will: (1) examine variability in trajectories of adaptive functioning from the point of diagnosis into transition to school; and (2) identify factors associated with trajectories of adaptive functioning. METHODS AND ANALYSIS: We aim to recruit 1300 children under 7 years of age with a recent (within 12 months) diagnosis of autism from seven sites: six in Canada; one in Israel. Participants will be followed prospectively from diagnosis to age 8 years, with assessments at 6-month intervals. Parents/caregivers will complete questionnaires administered via a customized online research portal. Following each assessment timepoint, families will receive a research summary report describing their child's progress on adaptive functioning and related domains. Analysis of the longitudinal data will map trajectories and examine child, family and service characteristics associated with chronogeneity (interindividual and intraindividual heterogeneity over time) and possible trajectory turning points around sensitive periods like the transition to school. ETHICS AND DISSEMINATION: Ethics approvals have been received by all sites. All parents/respondents will provide informed consent when enrolling in the study. Using an integrated knowledge translation approach, where stakeholders are directly engaged in the research process, the PARC Study will identify factors associated with trajectories of functioning in children with autism. Resulting evidence will be shared with government policy makers to inform provincial and national programs. Findings will be disseminated at conferences and published in peer-reviewed journals.

Development of a generic fidelity measure for rehabilitation intervention research for children with physical disabilities.

AIM: To increase research rigour and create a plausible way to assess clinical effectiveness, it is necessary to measure the degree to which interventions are delivered as intended (fidelity). Generic fidelity measures enable evaluation of more than one intervention through observation of unique and general characteristics relevant across interventions. This study describes the first generic fidelity measure in paediatrics. METHOD: Items were constructed from multiple sources to create a general attributes domain and two paediatric cerebral palsy (CP) intervention-specific domains. After a pre-testing procedure, raters were trained and videos of clinical interventions were rated to test the measure's psychometric properties. RESULTS: The Paediatric Rehabilitation Observational measure of Fidelity (PROF) consisted of 30 items. Six raters were trained on the PROF and rated 25 videos. Internal consistency (α) and interrater reliability (IRR) for the frequency scale showed the following results: context therapy: α=0.71, IRR=0.75; child therapy: α=0.85, IRR=0.87; and general attributes; α=0.78, IRR=0.82. Quality scale scores across domains demonstrated internal consistency greater than 0.80 and interrater reliability of less than 0.40. Pearson's correlations (r=-0.71, p<0.001) and analyses of variance (p=0.01) validated that each intervention domain was an independent construct. INTERPRETATION: The PROF is reliable and valid for evaluating interventions used for children with CP. Future studies may use the measure's framework, general attributes domain, and procedures to test the psychometric properties of other interventions.

Changing Directions and Expanding Horizons: Moving towards More Inclusive Healthcare for Parents of Children with Developmental Disabilities.

Family-centred service (FCS) acknowledges the importance of family engagement in therapeutic processes and focuses on the needs of all family members. This way of thinking and practicing is becoming increasingly recognized as an optimal care delivery model for families of children with developmental disabilities (DDs). However, in most places, disability services are oftentimes 'child-centric', wherein family members are seen only as partners in therapy or care delivery, while their own needs are not addressed. This arises from the lack of awareness of complex and highly individual family needs by professionals with whom they interact, but also from a significant lack of service infrastructure oriented towards parent-specific needs in existing service delivery models. This concept paper highlights the known challenges associated with parenting a child with a DD and discusses the intersectionality of factors impacting parental health and well-being, with a goal of promoting more equitable, holistic, and inclusive healthcare for all family members of children with DDs.

Programs to Prepare Siblings for Future Roles to Support Their Brother or Sister with a Neurodevelopmental Disability: a Scoping Review.

Purpose of Review: To identify and map the characteristics and outcomes of programs designed to prepare siblings for their future roles with their sibling with a neurodevelopmental disability. Recent Findings: Existing programs to support siblings of individuals with a neurodevelopmental disability often focus on providing information about neurodevelopmental disabilities, creating a community for siblings to connect with each other, and connecting siblings to resources and services to support them in their roles. Some programs are offered to the whole family with specific sessions for siblings. While these program descriptions are provided in the literature, there is limited understanding about the impacts and outcomes of these programs on siblings of an individual with a neurodevelopmental disability. Summary: Fifty-eight articles (published between 1975 and 2020, with > 50% published since 2010) met the inclusion criteria, representing 54 sibling programs from 11 countries. Extracted data represented 1033 (553 females) sibling participants, between 4 and 67 years old. Twenty-seven programs focused on the outcome of knowledge acquisition for the siblings and thirty-one programs focused on the outcome of empowerment for the siblings to teach skills to their sibling with a neurodevelopmental disability. While there is an increasing number of programs for siblings of individuals with a neurodevelopmental disability in the past decade, there is a lack of siblings as co-developers or facilitators. Future research should consider the various roles that siblings can have in programs to address their needs. Supplementary Information: The online version contains supplementary material available at 10.1007/s40474-023-00272-w.

Construct Validity of the Autism Classification System of Functioning: Social Communication (ACSF:SC) Across Childhood and Adolescence.

This study examined the construct validity of the Autism Classification System of Functioning: Social Communication (ACSF). Participants included 145 parents of children with autism (2-19 years). The degree of convergent and discriminant validity between parent reported ACSF and subscales from Social Responsiveness Scale 2nd edition and Behavior Assessment System for Children, 3rd Edition were examined against a priori hypotheses. We examined construct validity in the entire sample as well as in specific age cohorts. Our findings suggest that ACSF can provide a valid classification system of social communication ability in children with autism 2-19 years of age, and its two subscales may be used to examine different aspects of social communication ability.

Co-designing solutions to enhance access and engagement in pediatric telerehabilitation.

Introduction: Prior to the COVID-19 pandemic, children's therapy appointments provided by Ontario's publicly-funded Children's Treatment Centre (CTCs) primarily occurred in-person. With COVID-19 restrictions, CTCs offered services via telerehabilitation (e.g., video, phone), which remains a part of service delivery. CTC data shows that families experience barriers in attending telerehabilitation appointments and may need supports in place to ensure service accessibility. Our study aimed to co-design innovative solutions to enhance access and engagement in ambulatory pediatric telerehabilitation services. This manuscript reports the co-design process and findings related to solution development. Methods: This research project used an experience based co-design (EBCD) approach, where caregivers, clinicians and CTC management worked together to improve experience with telerehabilitation services. Interview data were collected from 27 caregivers and 27 clinicians to gain an in-depth understanding of their barriers and successes with telerehabilitation. Next, 4 interactive co-design meetings were held with caregivers, clinicians and CTC management to address priorities identified during the interviews. Using qualitative content analysis, data from the interviews and co-design meetings were analyzed and findings related to the solutions developed are presented. Findings: Four topics were identified from the interview data that were selected as focii for the co-design meetings. Findings from the co-design meetings emphasized the importance of communication, consistency and connection (the 3C's) in experiences with telerehabilitation. The 3C's are represented in the co-designed solutions aimed at changing organizational processes and generating tools and resources for telerehabilitation services. Discussion: The 3C's influence experiences with telerehabilitation services. By enhancing the experience with telerehabilitation, families will encounter fewer barriers to accessing and engaging in this service delivery model.

The Development and Evaluation of a Cross-Context Employment Program for Autistic Adolescents.

Vocational programs typically focus on building the skills of autistic youth. However, there is growing recognition that the supportive environment (or ecosystem) around an individual plays an important role in finding and maintaining work. Programs at the ecosystem-level can be established by coordinating support before high school ends. Cocreation of a vocational program by support providers can facilitate an integrated effort to prepare autistic youth for employment. In this study, we describe and evaluate the Job-Train Program (JTP), a vocational program for autistic high school students codesigned with educators and a community-based social services agency. A school board, community-based social services agency, and academics partnered to cocreate JTP. JTP combined skill teaching and paid supported employment on a university campus. This pilot study evaluated JTP using qualitative and quantitative data. Twelve autistic youth were recruited, aged 15-18 years (10 males, 2 females) with an average intelligence quotient of 101.9 (standard deviation = 14.4), from the Wechsler Abbreviated Scale of Intelligence-2. Youth and parents completed self-report measures (pre-post), including the primary outcome, Canadian Occupational Performance Measure (COPM). Post-JTP, interviews, focus groups, and surveys collected additional information from youth (n = 11), parents (n = 10), job coaches (n = 5), and employers (n = 8). Youth COPM scores indicated significant improvements in self-perceived ratings of skill performance (z = -2.5, p = 0.01) and satisfaction (z = -2.6, p = 0.01). Qualitative data corroborated COPM results noting youth skill improvements in self-esteem, independence, communication, and understanding work. Findings demonstrated a promising vocational training model for autistic high school students informing the development of integrated service pathways to support preparation for employment.

Why was this program developed?: When autistic young people leave school, they can experience difficulties in getting a job. We need to test whether job training might be helpful for autistic young people when they are leaving school. Current support focuses mostly on developing educational skills, but it is important that we think about the strengths and abilities of the individual within their environment. In this study, we worked with educators from schools and a community service agency (who support autistic adults) to develop a job training support program for autistic youth. What does this program do?: We designed the 13-week Job-Train Program (JTP) to provide training and paid work experience, develop work abilities, and increase support around the autistic youth. Participants took part in weekly group sessions about work skills, and they did 8 weeks of paid work, supported by a job coach on a university campus. How did researchers evaluate the program?: Twelve autistic high school students (age 15­18) took part, and eight university departments hosted work experiences. We used several approaches to see if the program was helping and to identify areas where we could improve the program in the future. Ten parents and 11 autistic youth completed the Canadian Occupational Performance Measure (COPM) before and after the program, so we could see if there were any changes in work-related skills. We also completed interviews with youth, focus groups with parents, and surveys with job coaches to gather feedback. What were the early findings?: Scores on the COPM questionnaire showed that the young people rated themselves as more skilled and they were more satisfied with their skills after the program. Parent ratings showed a similar pattern. When we spoke to youth, parents, and job coaches, they mentioned improvements in responsibility and independence. Eight employers in university departments gained awareness of autistic youth as employees and all were willing to be part of the program again. Parents suggested that having more training of advocacy skills would help youth with gaining work in the future. What were the weaknesses of this project?: We did not assess how well the job coaches did in delivering the program or exactly how they made accommodations within the work experience jobs. Autistic individuals and their parents were not included in program development. What are the next steps?: We now plan to include autistic youth and their parents in further refining the program. We also plan to follow up with the youth who took part, to see how they are doing in the long term. We also will improve the support provided by job coaches. How will this work help autistic adults now or in future?: The JTP approach may help autistic youth as they go into employment and could provide high-quality support for the transition to adulthood. We also show that university campuses could be great places for autistic youth to gain experience, so in the future hope that universities and schools work together more to help support autistic youth.

A narrative review of generic intervention fidelity measures.

To increase the rigor of pediatric rehabilitation research, there is a need to evaluate the degree to which an intervention is conducted as planned (i.e., fidelity). Generic fidelity measures evaluate more than one intervention and often include nonspecific attributes of the therapy process common to both interventions. The objective of this study was to describe the characteristics of generic fidelity measures and examine how these attributes fit with pediatric rehabilitation. A review of generic fidelity measures was conducted utilizing health and education databases. Five generic fidelity measures are described and examined for their applicability to pediatric rehabilitation. The measures were used in nine studies meeting the inclusion criteria, involving people ages from 11 years to >65 years undergoing psychotherapy. From the 76 nonspecific items, 37 items were judged to be applicable to pediatric rehabilitation. Common characteristics of nonspecific attributes with pediatric rehabilitation are discussed, and investigator plans to conduct future testing.

Exploring Autism, Culture, and Immigrant Experiences: Lessons from Sri Lankan Tamil Mothers.

Background: Canada is home to a mosaic of cultures with immigrant communities from a wide range of countries, but there are significant variations in how autism spectrum disorder (ASD) may be understood across different immigrant groups, including Sri Lankan Tamils. Such gaps in knowledge may present challenges for immigrant families that are trying to access appropriate care for their child, including occupational therapy services. Purpose: This descriptive qualitative study aimed to better understand the experiences of immigrant Sri Lankan Tamil parents of children diagnosed with ASD in Southern Ontario, Canada. Method: Interviews were analyzed using an in-depth content analysis. Findings: Results demonstrated parents' perceived supports and barriers towards ASD intervention planning, and indicated that parents were generally satisfied by the level of cultural competence in current ASD systems. However, families may still experience significant immigrant-related barriers that are not fully addressed. Implications: Recommendations to improve cultural awareness among occupational therapists utilizing ASD interventions are suggested.

A scoping review of the literature on grandparents of children with disabilities.

PURPOSE: The objectives of this review were to: (a) explore the extent and nature of available research on non-custodial grandparents of children with physical, intellectual, or neurodevelopmental disabilities and (b) descriptively summarize the research findings from those studies. METHODS: We followed the five-stage scoping review methodology to identify relevant studies from four databases: Medline, CINAHL, Embase, and PsycINFO. Primary, peer-reviewed studies that explored grandparent-related topics in the context of childhood disability were included. RESULTS: Thirty-one studies were identified and analyzed. All of the studies followed non-experimental and qualitative study designs. In the last decade, there has been a growing interest in research on this population (n = 15). Grandparents varied considerably in age, education, employment status, and living arrangements (n = 4680). Grandmothers represented the vast majority of the population (82%). We grouped the grandparent-related findings from the individual reports into four categories: 1. Adjustment to grandchild's disability, 2. Roles, 3. Perceptions, and 4. Experiences. CONCLUSION: Grandparents of children with disabilities are a heterogeneous population that experiences unique challenges in their grandparenting role. Future studies on this topic should be oriented toward high-quality, experimental study designs that take into consideration cultural, religious and demographic factors. Grandparents' involvement in healthcare should be encouraged.IMPLICATIONS FOR REHABILITATIONGrandparents of children with developmental disabilities who are not primary caregivers to their grandchild(ren) are significant family members in many families.They face unique challenges in adapting to their grandchild's disability and interacting with professionals regarding their grandchild's disability and functioning.Although there is considerable heterogeneity within this population, most grandparents share the experiences of gradual emotional adjustment to their grandchild's disability, active family involvement, positive perceptions of their family and grandchild's disability and lack of services for them.There are no identified interventions in the research literature that aimed to support grandparents of children with disabilities.

Effectiveness of Interventions to Promote Physical, Psychological, and Socioeconomic Well-being Outcomes of Parents of Children With Neurodevelopmental Disabilities: Protocol for a Systematic Review.

BACKGROUND: It is well recognized that parents of children with neurodevelopmental disabilities can experience a considerable burden of care associated with their child's disability, which can potentially impact their functioning and quality of life. Historically, the intervention efforts in pediatric rehabilitation have focused primarily on the child's development and well-being and much less on parental and family well-being. The impact that a child's diagnosis might have on parents remains unclear, and it is unknown how we can best support parents on their journey of childhood disability. It is, therefore, important to synthesize the published evidence on interventions for parents of children with neurodevelopmental disabilities so that clinicians can be better informed about the ways in which families they work with can be supported. OBJECTIVE: This manuscript presents the protocol for a systematic review of the effectiveness of interventions aiming to improve the physical, psychological, or socioeconomic well-being of parents of children with neurodevelopmental disabilities when compared to usual care or no care. METHODS: We will systematically search 4 databases (MEDLINE, Embase, PsycINFO, and CINAHL) from the year 2000 until the search date, for randomized controlled trials that evaluated the effectiveness of interventions to improve parental physical, psychological, or socioeconomic well-being. Two authors will independently screen the titles and abstracts, which will then be followed by full-text screening. After the eligibility assessment, two reviewers will independently extract data and conduct a risk of bias assessment using the Cochrane risk-of-bias tool. We will assess the quality of evidence using the Grading of Recommendations, Assessment, Development and Evaluation approach. If the data allow, we will perform a pairwise meta-analysis or network meta-analysis. We plan to evaluate the coherence of the network with a global test by using the node-splitting method. RESULTS: As of May 30, 2022, there have been two searches of data initiated: in September 2020 for articles published since 2000 and an updated search in January 2022 for articles published since 2020. We have screened all the titles and abstracts and performed eligibility assessment. However, the final number of references is still not available due to the additional information needed for some of the potentially eligible studies. The results from this systematic review will be published in an indexed journal within a year after this protocol is published. CONCLUSIONS: This study is expected to identify a variety of programs to address the well-being needs of parents of children with neurodevelopmental disabilities and provide directions on how parents can best be supported within health care. Such interventions might help professionals and stakeholders in creating service delivery models that can enhance parental well-being and minimize the risks to their physical, psychological, and socioeconomic functioning. TRIAL REGISTRATION: PROSPERO CRD42021230706; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=230706. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/38686.

Examining the development and utilization of infection control policies to safely support adults with intellectual and developmental disabilities in congregate living settings during COVID-19.

OBJECTIVE: Congregate living settings supporting individuals with intellectual and developmental disabilities (IDD) have experienced unprecedented challenges during the COVID-19 pandemic. This study aimed to explore the development and utilization of infection control policies in congregate living settings supporting individuals with IDD during the COVID-19 pandemic. METHODS: This qualitative study employed an interpretive description using semi-structured interviews involving administrative personnel from agencies assisting those with IDD residing in Developmental Services congregate living settings in Ontario, Canada. RESULTS: Twenty-two semi-structured interviews were conducted with individuals from 22 agencies. Thematic analysis revealed three categories: Development of infection control policies, Implementation of infection control policies, and Impact of infection control policies. Each category yielded subsequent themes. Themes from the Development of infection control policies category included New responsibilities and interpreting the grey areas, and Feeling disconnected and forgotten. Four themes within the Implementation of infection control policies category included, "It's their home" (i.e. difficulty balancing public health guidance and organizational values), Finding equipment and resources (e.g. supports and barriers), Information overload (i.e. challenges agencies faced when implementing policies), and Emerging vaccination (i.e. perspective of agencies as they navigate vaccination for clients and staff). The category of Impact of infection control policies had one theme-Fatigue and burnout, capturing the impact of policies on stakeholders in congregate living settings. CONCLUSION: Agencies experienced difficulties developing and implementing infection control policies, impacting the clients they serve and their families and staff. Public health guidance should be tailored to each congregate living setting rather than generally applied.

RéSUMé: OBJECTIF: Les lieux d'hébergement collectif pour les personnes ayant une déficience intellectuelle ou de développement (DID) ont affronté des défis sans précédent durant la pandémie de la COVID-19. La présente étude vise à explorer l'élaboration et l'utilisation des politiques de prévention des infections dans les lieux d'hébergement collectif pour les personnes ayant une DID durant la pandémie de la COVID-19. MéTHODES: Cette étude qualitative repose sur la description interprétative lors d'entrevues semi-structurées auprès du personnel administratif des organismes qui viennent en aide aux personnes ayant une DID et résidant dans des lieux d'hébergement collectif en Ontario, au Canada. RéSULTATS: Au total, 22 entrevues semi-structurées ont été effectuées auprès de personnes provenant de 22 organismes. L'analyse thématique a révélé trois catégories : Élaboration des politiques de prévention des infections, mise en œuvre des politiques de prévention des infections, et impacts des politiques de prévention des infections. Chaque catégorie a généré des thèmes subséquents. Les thèmes liés à l'élaboration des politiques de prévention des infections comprenaient les nouvelles responsabilités et l'interprétation des zones grises, et le sentiment de détachement et d'avoir été oublié. Quatre thèmes découlant de la mise en œuvre des politiques de prévention des infections comprenaient « c'est leur maison ¼ (c'est-à-dire difficulté d'équilibrer les mesures de santé publique et les valeurs organisationnelles), trouver de l'équipement et des ressources (p. ex., mesures de soutien et obstacles), surcharge d'information (c'est-à-dire les défis qu'ont dû affronter les organismes lors de la mise en œuvre des politiques) et la vaccination émergente (notamment la perspective des organismes lorsqu'ils ont dû composer avec le processus de vaccination pour la clientèle et le personnel). La catégorie des impacts des politiques de prévention des infections avait un thème : la fatigue et l'épuisement professionnel, saisissant les impacts des politiques de prévention des infections dans les lieux d'hébergement collectif sur ses intervenants. CONCLUSION: Les organismes ont éprouvé des difficultés lors de l'élaboration et la mise en œuvre de politiques de prévention des infections, touchant ainsi leurs clients, leurs familles et leurs employés. Les mesures de santé publique devraient plutôt être adaptées à chaque lieu d'hébergement collectif, et non pas appliquées de façon générale.

Adaptation, Content Validity and Reliability of the Autism Classification System of Functioning for Social Communication: From Toddlerhood to Adolescent-Aged Children with Autism.

The Autism Classification System of Functioning: Social Communication (ACSF) describes social communication functioning levels. First developed for preschoolers with ASD, this study tests an expanded age range (2-to-18 years). The ACFS rates the child's typical and best (i.e., capacity) performance. Qualitative methods tested parent and clinician perspectives of the ACSF age expansion using content analysis. The ACSF was used twice by parents and professionals for the same child/youth. Reliabilities were assessed using weighted kappa. Content validity supported the ACSF's applicability, clarity, and usability. The ACSF adaptations did not change its original construct. Reliability were calculated from 90 parent and professional Time-1 and Time-2 ratings for children/youth (2.1-15.6 years). Results showed good-to-very good intra-rater agreement (typical) and good inter-rater agreement (capacity).

Critically Examining the Person-Environment Relationship and Implications of Intersectionality for Participation in Children's Rehabilitation Services.

Participation of children in rehabilitation services is associated with positive functional and developmental outcomes for children with disabilities. Participation in therapy is at risk when the personal and environmental contexts of a child create barriers to accessing services. The International Classification of Functioning, Disability and Health (ICF) provides a framework for conceptualizing the personal and environmental factors linked to a child. However, it does not facilitate critical examination of the person-environment relationship and its impact on participation in children's rehabilitation. This perspective study proposes the use of intersectionality theory as a critical framework in complement with the ICF to examine the impact of systemic inequities on the participation in therapy for children with disabilities. Clinicians are called to be critical allies working alongside children and families to advocate for inclusive participation in children's rehabilitation by identifying and transforming systemic inequities in service delivery.