Rosenbaum disability

The prevalence of cerebral palsy (CP) varies globally, with higher rates and burden of disease in low- and middle-income countries. CP is a lifelong condition with no cure, presenting diverse challenges such as motor impairment, epilepsy, and mental health disorders. Research progress has been made but more is needed, especially given consumer demands for faster advancements and improvements in the scientific evidence base for interventions. This paper explores three strategies to accelerate CP research: consumer engagement, global clinical trial networks, and adaptive designs...

BACKGROUND: Translating knowledge to improve paediatric rehabilitation has become a research area of interest. This study describes the development and evaluation of an online conference that brought together perspectives of individuals with cerebral palsy (CP), families, health care professionals, and researchers to discuss the daily living of individuals with CP. METHODS: We anchored the development and implementation of the online conference in the action cycle of the Knowledge to Action Framework...

CONTEXT: Collegiate athletes who are deaf or hard-of-hearing (D/HoH) are diagnosed with concussions at a similar rate as athletes who are hearing; however, little evidence exists on knowledge and attitudes of athletes who are D/HoH toward concussions. This study aimed to examine differences in knowledge of and attitudes toward concussions between athletes who are D/HoH and athletes who are hearing. DESIGN: Cross-sectional research design. METHODS: Of the 310 athletes who are D/HoH and 430 athletes who are hearing that were invited to participate, 90 athletes who are D/HoH, and 72 athletes who are hearing completed the survey...

BACKGROUND: Children and adolescents with Down syndrome (DS) may experience impairments in sensory and motor skills that can be interrelated. The purposes of this study were (i) to compare the sensory processing patterns and gross motor function between children and adolescents with DS and with typical development (TD) and (ii) to explore associations between these areas in both DS and TD groups. METHOD: This cross-sectional study involved a sample size of 25 participants with DS (mean age 10...

BACKGROUND: Family members often undertake caregiving responsibilities over long periods of time, which could lead to caregiving burden. A theory-based and culturally sensitive learned resourcefulness program may help family caregivers mitigate stress by learning and using self-help strategies. OBJECTIVES: This study's aim is to use rigorous methods to investigate the effects of a learned resourcefulness program called SOURCE (Chen et al., Geriatric Nursing, 2021, 45, 1129) to reduce caregiver burden and improve quality of life (QOL) for family caregivers...

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...

No abstract text is available yet for this article.

PURPOSE: Family-centred service (FCS) is an established approach for delivering services in children's rehabilitation and healthcare. This article describes that parents continue to report mixed experiences with healthcare services for their children, as well as their ideas about what they need and want from these services. These findings will inform the development of an up-to-date measure of Family-Centred Service called Measure of Processes of Care (MPOC 2.0). METHODS: A qualitative descriptive study was conducted with parents, using focus groups and open-ended interviews...

Purpose: To describe the initial steps in the development of a family-completed, modified version of the Gross Motor Function Measure (GMFM-88) to report gross motor function of young people with cerebral palsy in their natural environments. Methods: Development of the Gross Motor Function - Family Report (GMF-FR) was based on expert opinion involving 13 experienced clinicians and researchers, in four steps: (1) item identification to target items that reflect functional gross motor performance; (2) item selection; (3) critical analysis of the items; and (4) item and scoring modification...

PURPOSE: Current service models in childhood rehabilitation promote the active participation of parents/caregivers in their children's therapies. The existing literature provides a limited understanding of the tasks and responsibilities parents undertake in their children's therapies, especially over telepractice. This study describes the tasks undertaken by parents in their children's speech therapy delivered virtually during the COVID-19 pandemic. METHODS: A qualitative descriptive study was conducted with parents and speech-language pathologists, using open-ended interviews...

AIM: To identify and provide a descriptive overview of the development of children, adolescents, and young adults with cerebral palsy (CP) in longitudinal studies; and map areas of focus according to the components of the World Health Organization's International Classification of Functioning, Disability, and Health (ICF). METHOD: Longitudinal studies of the development of children, adolescents, and/or young adults with CP were included in this scoping review. A search for eligible studies was conducted in the databases MEDLINE, PubMed, LILACS, EMBASE, Cochrane, CINAHL, and Scopus, and was restricted to the years 2002 to 2022...

Purpose : The World Health Organization's International Classification of Functioning, Disability and Health (ICF) provides a comprehensive framework to conceptualise clinical services. This study explored how speech-language pathologists (SLPs) conceptualised therapy goals for preschoolers with language difficulties and disorders within the ICF framework. Method : An online survey was distributed to SLPs practising in a publicly funded Preschool Speech and Language program in Ontario, Canada. SLPs rated their familiarity with the ICF framework, and then reported all therapy goals for one child with language difficulty/disorder on their caseload...

PURPOSE: This study explored the feasibility, impact and parent experiences of ENVISAGE (ENabling VISions And Growing Expectations)-Families, a parent-researcher co-designed and co-led program for parents/caregivers raising children with early-onset neurodisabilities. METHODS: Parents/caregivers of a child with a neurodisability aged ≤6 years, recruited in Australia and Canada, participated in five weekly online workshops with other parents. Self-report measures were collected at baseline, immediately after, and 3 months post-ENVISAGE-Families; interviews were done following program completion...

No abstract text is available yet for this article.

BACKGROUND: Children with disability face long wait times for rehabilitation services. Before the COVID-19 pandemic, telehealth adoption was low across pediatric rehabilitation. Owing to the COVID-19 pandemic restrictions, pediatric therapists were asked to rapidly shift to telehealth, often with minimal training. To facilitate the behavior changes necessary for telehealth adoption, provision of appropriate evidence-based training and support is required. However, evidence to support the effective implementation of such training is lacking...

IMPORTANCE: The field of childhood disability has undergone a sea-change in the past two decades. Remarkably, 70 years ago, the ideas now taking root were expressed with poignant clarity by Ireland's Christy Brown, providing lessons that were there to be learned, illustrating why 'My Left Foot' remains a singular contribution to the literature about child development and disability. OBJECTIVE OF THIS ESSAY: The World Health Organization's 2001 reconsideration of 'disability' (the International Classification of Functioning, Disability and Health or ICF) has spawned considerable uptake and adaptation of contemporary concepts, notably with the 'F-Words for Childhood Disability' (now the 'F-words for Child Development')...

The purpose of this special communication is to present ideas and thoughts from a symposium at the 75th Annual Meeting of the American Academy for Cerebral Palsy and Developmental Medicine. These included perspectives and lessons from 3 previously published review studies regarding cerebral palsy (CP) research in Brazil, India, and African countries, which explored the literature through the lens of the World Health Organization's International Classification of Functioning, Disability and Health (ICF) framework...

Background: Our understanding of child disability has undergone major changes over the last three decades transforming our approach to assessment and management. Globally there are significant gaps in the application of these 21st century models of care. There is recognition that economic, cultural, and social factors influence transitions in care and there is need to consider contextual factors. Objectives: A two-day workshop brought together key stakeholders to discuss current models of care and their application in the East African context...

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...

INTRODUCTION: In childhood disability research, the involvement of families is essential for optimal outcomes for all participants. ENVISAGE (ENabling VISions And Growing Expectations)-Families is a programme comprising five online workshops for parents of children with neurodevelopmental disorders. The workshops aim to introduce parents to strengths-based perspectives on health and development. The research is based on an integrated Knowledge Translation (iKT) approach, in which knowledge users are involved throughout the research process...