Reliability and Validity of the Youth and Young-Adult Participation and Environment Measure (Y-PEM): An Initial Evaluation.

AIM: To examine psychometric properties and aspects of utility of the Youth and young-adult Participation and Environment Measure (Y-PEM). METHODS: Young people with and without physical disabilities (n = 113) aged 12 to 31 (x¯ = 23; SD = 4.3) completed an online survey containing the Y-PEM and QQ-10 questionnaire. To examine construct validity, differences in participation levels and environmental barriers/facilitators were examined between those with (n = 56) and without disabilities (n = 57) via t-test. Internal consistency was computed using Cronbach's alpha. To examine test-retest reliability, a sub-sample of 70 participants completed the Y-PEM a second time, 2-4 weeks apart. The Intraclass correlation coefficient (ICC) was calculated. RESULTS: Descriptively, participants with disabilities had lower levels of frequency and involvement across all four settings: home, school/educational, community, workplace. Internal consistency were 0.71 and above (up to 0.82) across all scales with the exception of home (0.52) and workplace frequency (0.61). Test-retest reliability were 0.70 and above (up to 0.85) across all settings except for environmental supports at school (0.66) and workplace frequency (0.43). Y-PEM was perceived as a valuable tool with relatively low burden. CONCLUSIONS: Initial psychometric properties are promising. Findings support Y-PEM's use as a feasible self-reported questionnaire for individuals aged 12-30 years old.

Treatment and re/habilitation of children with cerebral palsy in India: a scoping review.

AIM: To describe the nature and extent of the literature addressing the medical and its re/habilitative management of cerebral palsy (CP) in India. METHOD: Online worldwide scholarly databases, research hosting directories, Indian publishing houses, and grey literature were used to identify papers published between 2005 and 2016. We retrieved 144 English language papers that described the medical and rehabilitative management of Indian children with CP. RESULTS: Quantitative, qualitative, and mixed research designs are published by a variety of health care professionals in India. Intervention (45%) and observational studies (30%) predominate. Outcomes were categorized using the World Health Organization's International Classification of Functioning, Disability and Health framework, with body structure and function most reported and activity/participation least reported; 57% described its re/habilitation interventions and 43% were medical interventions. INTERPRETATION: There is a substantial body of CP research in India that focuses on interventions to reduce impairments, with minimal attention given to activities and participation, environmental, and personal factors. Twenty-six per cent of studies are published in what appear to be 'predatory journals'. This paper serves as an alert about the presence of 'predatory journals' in medicine that may introduce publication bias, which can distort results reported in those studies individually, or from conclusions drawn in reviews that contain those studies. WHAT THIS PAPER ADDS: Cerebral palsy research in India focuses on interventions to reduce impairment. Activities, participation, and environmental factors are minimally addressed. Quantitative studies are more common than qualitative studies. Many Indian studies are published in journals that are not indexed in worldwide databases of scholarly journals.

TRATAMIENTO Y REHABILITACIÓN DE NIÑOS CON PARÁLISIS CEREBRAL EN LA INDIA: REVISIÓN PANORÁMICA: OBJETIVO: Describir la naturaleza y extensión de la literatura que trata sobre el manejo médico y de rehabilitación de la parálisis cerebral (PC) en la India. METODO: Con el fin de identificar artículos publicados entre 2005 y 2016, se utilizaron bases de datos académicos en línea de todo el mundo, directorios de investigación, imprentas de publicación de la India, y literatura no convencional. Obtuvimos 144 publicaciones en el idioma inglés que describían el manejo médico y de rehabilitación de niños con PC en la India. RESULTADO: Diseños de investigación de tipo cuantitativos, cualitativos y mixtos fueron publicados por una variedad de profesionales de la salud en India. Predominan los estudios de intervención (45%) y de observación (30%). Los resultados fueron categorizados utilizando el marco de la Clasificación Internacional de Funcionamiento, Discapacidad y Salud de la Organización Mundial de la Salud (OMS) con más reportes sobre estructuras y funciones corporales y menos reportes sobre actividad y participación; 57% describieron intervenciones de rehabilitación y 43% fueron intervenciones médicas. INTERPRETACIÓN: En la India hay un inventario sustancial de investigaciones sobre PC que se focalizan en intervenciones destinadas a reducir limitaciones, dando mínima atención a actividades y participación, factores ambientales y factores personales. Se publican 26% de estudios en los que parecerían ser revistas de dudosa calidad científica llamadas "revistas depredadoras". Este trabajo sirve como una alerta sobre la presencia en medicina de "revistas depredadoras" que pueden introducir publicaciones sesgadas, las que pueden distorsionar resultados publicados en esos estudios de manera individual, o sacar conclusiones erróneas en revisiones que contienen dichos estudios.

TRATAMENTO E REABILITAÇÃO DE CRIANÇAS COM PARALISIA CEREBRAL NA ÍNDIA: UMA REVISÃO DE ESCOPO: OBJETIVO: Descrever a natureza e extensão da literatura abordando o manejo médico e de reabilitação da paralisia cerebral (PC) na Índia. MÉTODO: Bases de dados científicas online de todo o mundo, diretórios de pesquisa, casas de publicação indianas, e literatura cinzenta foram usadas para identificar artigos publicados entre 2005 e 2016. Obtivemos 144 artigos em língua inglesa que descreveram o manejo médico e de reabilitação de crianças indianas com PC. RESULTADOS: Desenhos de pesquisas quantitativos, qualitativos, e mistos foram publicados por uma variedade de profissionais da saúde na Índia. Estudos de intervenção (45%) e observacionais (30%) predominaram. Os resultados foram categorizados usando a estrutura da Classificação Internacional de Funcionalidade, Incapacidade e Saúde da Organização Mundial de Saúde, sendo que a estrutura e função do corpo foi o domínio mais reportado e atividades/participação o menos reportado; 57% descreveram intervenções de reabilitação e 43% eram intervenções médicas. INTERPRETAÇÃO: Há uma quantidade substancial de pesquisas em PC na Índia que focam em intervenções para reduzir deficiências, com atenção mínima dada a atividades e participação, e fatores pessoais e ambientais. Vinte e seis por cento dos estudos foram publicados em jornais médicos aparentemente predatórios, o que pode introduzir vieses de publicação, e distorcer os resultados relatados nestes estudos individualmente, ou em conclusões obtidas em revisões que contém este estudo.

Preventing Youth from Falling Through the Cracks Between Child/Adolescent and Adult Mental Health Services: A Systematic Review of Models of Care.

Optimizing the transition between child and adolescent mental health services (CAMHS) and adult mental health services (AMHS) is a priority for healthcare systems. The purpose of this systematic review is to: (1) identify and compare models of care that may be used to facilitate the transition from CAMHS to AMHS; and (2) discuss trends and implications to inform future research and practice. Results identified three models of care which move beyond healthcare services and incorporate a broader range of services that better meet the dynamic needs of transition-aged youth. Joint working among providers, coupled with individualized approaches, is essential to facilitating continuity of care.

Comparative Effectiveness Research and Children With Cerebral Palsy: Identifying a Conceptual Framework and Specifying Measures.

PURPOSE: A step toward advancing research about rehabilitation service associated with positive outcomes for children with cerebral palsy is consensus about a conceptual framework and measures. METHODS: A Delphi process was used to establish consensus among clinicians and researchers in North America. RESULTS: Directors of large pediatric rehabilitation centers, clinicians from large hospitals, and researchers with expertise in outcomes participated (N = 18). Andersen's model of health care utilization framed outcomes: consumer satisfaction, activity, participation, quality of life, and pain. Measures agreed upon included Participation and Environment Measure for Children and Youth, Measure of Processes of Care, PEDI-CAT, KIDSCREEN-10, PROMIS Pediatric Pain Interference Scale, Visual Analog Scale for pain intensity, PROMIS Global Health Short Form, Family Environment Scale, Family Support Scale, and functional classification levels for gross motor, manual ability, and communication. CONCLUSIONS: Universal forms for documenting service use are needed. Findings inform clinicians and researchers concerned with outcome assessment.

The TRUST Study-TRansition US Together: Evaluating the Impact of a Parent- and Adolescent-Centered Transition Toolkit on Transition Readiness in Patients with Juvenile Idiopathic Arthritis and Childhood-Onset Systemic Lupus Erythematosus.

OBJECTIVE: Adolescents with chronic rheumatic disease must increasingly take on more responsibility for disease management from parents as they transition from pediatric to adult care. Yet, there are limited resources to inform and support parents about transition. Here, we evaluate the impact of a Transition Toolkit, geared towards parents and adolescents, on transition readiness, and explore the potential impact of parent-adolescent communication. METHODS: A prospective cohort study of youths aged 14-18 years old and their parents was performed. Participant demographics, disease characteristics, transition readiness scores (Transition-Q, max 100), and parent-adolescent communication scores (PACS, max 100) were collected at enrollment (when the Transition Toolkit was shared with adolescents and their parents. Generalized estimating equation (GEE) analyses determined the influence of the Toolkit on transition readiness and explored the role of parent-adolescent communication quality. Subgroup analyses were conducted by sex. RESULTS: A total of 21 patients were included; 19 completed one post-intervention Transition-Q and 16 completed two. Transition-Q scores increased over time and the rate of increase doubled after the Toolkit was shared (ß = 7.8, p < 0.05, and ß = 15.5, p < 0.05, respectively). CONCLUSION: Transition readiness improved at each follow-up, the greatest increase was seen after the Toolkit was shared. Parent-adolescent communication quality did not appear to impact changes in transition readiness.

The Association Between Autism Symptomatology and Adaptive Functioning Over Six Months: Findings from the Pilot Phase of the PARC Study.

PURPOSE: In the context of developmental trajectories, the association between adaptive functioning and core autism symptomatology remains unclear. The current study examines the associations of adaptive behavior with autism symptom sub-domains and with different facets of symptom expression. METHODS: Participants include 36 children with a recent diagnosis of autism (33 males; mean age = 56.4 months; SD = 9 months). Families were recruited in the context of the Pediatric Autism Research Cohort (PARC) project. Parents filled out questionnaires at two time points, six months apart, regarding their child's autism symptoms and adaptive functioning. The longitudinal relationship between adaptive functioning and autism symptoms was investigated using Mixed Linear Model analyses: one assessing the relationship between general symptom levels and adaptive functioning, and another examining the associations between symptom frequency and impact with adaptive functioning. We conducted Pearson correlation tests at both time points to assess the associations between symptom sub-domains and adaptive functioning. RESULTS: Findings showed that higher autism symptoms associated with lower adaptive behavior skills, and that this association remained stable over time. Autism impact scores did not significantly relate to adaptive skills, as opposed to frequency scores. Associations between adaptive functioning and autism symptom sub-domains strengthened over time. CONCLUSION: These findings suggest that adaptive functioning is associated with parent-report autism symptomatology, and that this association changes and, on average, becomes stronger over time. Findings may indicate that frequency and impact of symptoms have differential roles in the development of adaptive skills and are worthy of further exploration.

Development and content validity of the youth and young-adult participation and environment measure (Y-PEM).

PURPOSE: To develop and evaluate the content of a self-reported measure of participation and environment, named Youth, Young-adult Participation and Environment Measure (Y-PEM), capturing participation at home, school, community, and the workplace among individuals with physical disabilities aged 12-30. MATERIALS AND METHODS: A multi-phase sequential design based on elements of COnsensus for Standard Measurements INstrument was employed. Five consecutive rounds of cognitive interviews with 24 participants aged 12-33 years (X̅ = 20.9; n = 19 with a physical disability) and consultation with experts (n = 15) were conducted for item development and validation. Relevancy and clarity of items in each setting were assessed using the 10-cm Visual Analogue Scales (VASs). RESULTS: Participants recommended adding activities specific to this age group (i.e., dating, caregiving, preparing meals, employment). On a 4-point Likert scale, work-related items were perceived important by experts (X̅ = 3.4) and young adults (X̅ = 3.1) with average clarity of 8.8 and relevancy of 8.4 out of 10, on the VASs. Similarly, the average clarity of items across settings (home, school, community) ranged from 6.9 to 8.7 and relevancy from 7.4 to 8.1. No modifications were required in environmental items. CONCLUSIONS: Results suggest that Y-PEM is clear, relevant, comprehensive, and can be completed by individuals aged 12-30 with physical disabilities.IMPLICATIONS FOR REHABILITATIONThe Y-PEM can provide a standardized and systematic method to assess the first-hand subjective experience of youth and young adults with disabilities aged 12-30 in their participation at home, school, community, and the workplace.The Y-PEM can provide information regarding participation in activities that prepare youth or young adults for the job market as well as their perspective on the environmental barriers or supports that they may face in their employment.Clinicians can use the Y-PEM to identify environmental barriers and facilitators that impact participation across different settings and address them to further promote participation in meaningful and age-related activities.

Evaluated interventions addressing developmental transitions for youth with mental health disorders: a meta-analysis.

PURPOSE: The objective of this meta-analysis was to provide a quantitative synthesis of the effects of studies evaluating developmentally appropriate programs or interventions for transition-age youth with mental health disorders. METHODS: Studies, between January 1992 and March 2021, were included if they contained a sample population with a median age between 12 and 25 years and with a mental health disorder and described the results of health interventions addressing aspects of developmental transitions. Independent reviewers screened study texts and assessed the risk of bias. Random effects meta-analysis was used to pool data on standardized mean differences. RESULTS: Under neurodevelopmental studies (6), the effect size of interventions measuring social outcomes was 1.00 (95% CI: -0.01 to 2.00), parental stress levels was -0.10 (95% CI:-0.74 to 0.55), autism symptoms was -0.40 (95% CI: -1.58 to 0.78), and self-determination was 0.16 (95% CI:-0.38 to 0.70). Under mental illness studies (3), the effect size of interventions measuring adolescent depressive symptoms was 0.48 (95% CI: 0.01 to 0.96) and parental depressive symptoms was 1.09 (95% CI: 0.20 to 1.97). CONCLUSIONS: There is no effect of interventions except on parental depressive symptoms under mental illness studies. Further research with comparable outcomes and assessments is needed.Implications for rehabilitation:Interventions for youth with mental health disorders should be developmentally appropriate and incorporate elements to assist youth in multiple aspects of their lives.The following approaches should be considered in interventions: skills training, prevocational/vocational guidance, a client-centered approach, and/or an ecological/experiential approach.Intervention researchers and practitioners should incorporate similar outcome assessment tools and measures in order to allow for valid comparisons between intervention effectiveness.

Exploring demographic, medical, and developmental determinants of adaptive behaviour in children with hemiplegic cerebral palsy.

Hemiplegic cerebral palsy (CP), the most common subtype, is characterized by high levels of mobility. Despite this, children with hemiplegic CP can face challenges functioning in and adapting to situations of everyday life. The purpose of this cross-sectional study (Hemi-NET database) was to identify factors associated with adaptive behaviour in 59 children with hemiplegic CP (ages 4-18; GMFCS I-IV). Using multivariate regression analyses, the relationship between demographic, medical, and developmental factors and adaptive behaviour (measured by the Adaptive Skills Composite score of the BASC-2) was explored. Results indicate that 34% of children had impaired adaptive skills. An autism diagnosis and lower communication functioning were significantly associated with poorer adaptive skills (R2 = 0.42, F(4, 43) = 7.87, p < 0.001), while factors such as IQ scores and GMFCS level were not. The results contribute to the growing literature that suggests that clinicians and researchers need to look beyond motor functioning when working with individuals with CP.

Perspectives on rehabilitation of children with cerebral palsy: exploring a cross-cultural view of parents from India and Canada using the international classification of functioning, disability and health.

PURPOSE: To explore parents' perspectives on rehabilitation of their child with cerebral palsy and their information needs. METHODS: Semistructured interviews were conducted with parents of children with CP from India (n = 11) and Canada (n = 7). Data were analyzed through an interpretive description approach using the International Classification of Functioning, Disability and Health framework. RESULTS: Body Structure and Function: Indian parents were more focused on fixing body structure and function challenges, and independent walking, than Canadian parents. Activity and Participation: All Canadian children were actively involved in school and fun activities in the community. Due to lack of accessible services, Indian children had less school and community participation. Environmental factors: accessible communities, occupational therapy services and greater use of assistive devices enabled Canadian children. Social and cultural beliefs, lack of access to services and inaccessible communities were the barriers experienced by Indian parents. Information needs: both groups needed information to make their child more functional. CONCLUSION: Canadian parents experience a more enabling environment and express a more social view of their child's health, suggesting both education on the International Classification of Functioning, Disability and Health principles and services are needed to better enable and empower Indian parents. There remains a need for healthcare professionals and services in both countries to be more family-centered. Implications for rehabilitation To help parents in rehabilitating their children with cerebral palsy (CP), in India, there is a need to (1) incorporate ICF education into medical curricula and clinical practice; (2) increase the availability of skilled healthcare professionals and centers; (3) make infrastructural and policy reforms to make the society more accessible for the disabled children. Education, counseling and awareness about CP might help both groups of parents, society, and HCPs to change their beliefs and attitudes regarding CP and its rehabilitation. Both countries would benefit from user-friendly and transparent policies. This will help parents to become more aware of them and use them in the rehabilitation process.

The effect of the environment on participation of children and youth with disabilities: a scoping review.

OBJECTIVE: The study's purpose was to identify and synthesize research evidence regarding the effect of the environment on community participation of children with disabilities. METHODS: A scoping review of peer-reviewed studies published from 1990 to 2011 was performed. Two independent reviewers selected studies based on a systematic procedure. Inclusion criteria for studies were: participants with a disability, aged 5­21 years, whose environment was examined in relation to participation in out-of-school activities. Data were organized and synthesized based on environmental domains within the International Classification of Functioning, Disability and Health (ICF): Natural Environment/Products and Technology; Support and Relationships; Attitudes; and Services, Systems and Policies. RESULTS: Searching identified 1232 articles and 31 met the inclusion criteria. Each domain of the environment within the ICF influenced participation as a facilitator and/or barrier. The most common facilitators involved social support of family and friends and geographic location. The most common barriers included attitudes, physical environment, transportation, policies and the lack of support from staff and service providers. CONCLUSIONS: Knowledge derived from this review can assist practitioners in addressing the specific environmental domains that influence children's participation. Such awareness can also foster new research questions and assist policy makers in identifying the factors influencing participation. IMPLICATIONS FOR REHABILITATION: All domains of the environment, suggested by the ICF, have an influence on children's participation.Evidence regarding the effect of the environment on participation is focused primarily on children with physical disabilities; more studies are needed involving various health conditions and age groups. Practitioners and decision-makers can focus attention on specific aspects of the environment, e.g. attitudinal challenges and social support, in order to foster inclusion and participation-based communities.