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Al-Beltagi M, Saeed NK, Bediwy AS, Alhawamdeh R, Elbeltagi R. Management of critical care emergencies in children with autism spectrum disorder. World J Crit Care Med 2025; 14:99975. [DOI: 10.5492/wjccm.v14.i2.99975] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/04/2024] [Revised: 12/13/2024] [Accepted: 12/30/2024] [Indexed: 02/27/2025] Open
Abstract
BACKGROUND Managing critical care emergencies in children with autism spectrum disorder (ASD) presents unique challenges due to their distinct sensory sensitivities, communication difficulties, and behavioral issues. Effective strategies and protocols are essential for optimal care in these high-stress situations.
AIM To systematically evaluate and synthesize current evidence on best practices for managing critical care emergencies in children with ASD. The review focuses on key areas, including sensory-friendly environments, communication strategies, behavioral management, and the role of multidisciplinary approaches.
METHODS A comprehensive search was conducted across major medical databases, including PubMed, Embase, and Cochrane Library, for studies published between 2000 and 2023. Studies were selected based on their relevance to critical care management in children with ASD, encompassing randomized controlled trials, observational studies, qualitative research, and case studies. Data were extracted and analyzed to identify common themes, successful strategies, and areas for improvement.
RESULTS The review identified 50 studies that met the inclusion criteria. Findings highlighted the importance of creating sensory-friendly environments, utilizing effective communication strategies, and implementing individualized behavioral management plans. These findings, derived from a comprehensive review of current evidence, provide valuable insights into the best practices for managing critical care emergencies in children with ASD. Sensory modifications, such as reduced lighting and noise, visual aids, and augmentative and alternative communication tools, enhanced patient comfort and cooperation. The involvement of multidisciplinary teams was crucial in delivering holistic care. Case studies provided practical insights and underscored the need for continuous refinement of protocols.
CONCLUSION The review emphasizes the need for a tailored approach to managing critical care emergencies for children with ASD. Sensory-friendly adjustments, effective communication, and behavioral strategies supported by a multidisciplinary team are integral to improving outcomes. Despite progress, ongoing refinement of care practices and protocols is necessary. This ongoing process addresses remaining challenges and engages healthcare professionals in continuous improvement of care for children with ASD in critical settings.
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Affiliation(s)
- Mohammed Al-Beltagi
- Department of Pediatric, Faculty of Medicine, Tanta University, Tanta 31511, Alghrabia, Egypt
- Department of Pediatric, University Medical Center, King Abdulla Medical City, Arabian Gulf University, Manama 26671, Manama, Bahrain
| | - Nermin Kamal Saeed
- Medical Microbiology Section, Department of Pathology, Salmaniya Medical Complex, Ministry of Health, Kingdom of Bahrain, Manama 26671, Manama, Bahrain
- Medical Microbiology Section, Department of Pathology, Irish Royal College of Surgeon, Bahrain, Busaiteen 15503, Muharraq, Bahrain
| | - Adel Salah Bediwy
- Department of Pulmonology, Faculty of Medicine, Tanta University, Tanta 31527, Alghrabia, Egypt
- Department of Pulmonology, University Medical Center, King Abdulla Medical City, Arabian Gulf University, Manama 26671, Manama, Bahrain
| | - Rawan Alhawamdeh
- Department of Pediatrics Research and Development, Sensoryme Dwc-llc, Dubai 712495, Dubai, United Arab Emirates
- Department of Pediatrics Research and Development, Genomics Sensory Play and Creativity Center, Manama 22673, Manama, Bahrain
| | - Reem Elbeltagi
- Department of Medicine, The Royal College of Surgeons in Ireland-Bahrain, Busiateen 15503, Muharraq, Bahrain
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de Oliveira Beliche TW, Weber MD, Tudella E, de Campos AC. Participation of Children With Developmental Coordination Disorder: A Scoping Review. Child Care Health Dev 2025; 51:e70059. [PMID: 40090764 DOI: 10.1111/cch.70059] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/30/2024] [Revised: 02/17/2025] [Accepted: 02/20/2025] [Indexed: 03/18/2025]
Abstract
BACKGROUND Children with developmental coordination disorder (DCD) may have participation restrictions; however, there is little information about the specific characteristics of the participation of children with this condition. Given the relevance of participation as an outcome of physiotherapeutic interventions, the objective of this study was to provide a broad review of studies on participation in children with DCD. METHODS We mapped the literature using a scoping review, through the MEDLINE/PubMed, Scopus, CINAHL and Web of Science databases to identify studies on participation in children with DCD published between 2001 and 2021. The studies were selected by two independent researchers considering the following criteria: (1) studies that evaluated participation and/or constructs related to participation in children with DCD and (2) children aged 5 to 17 years. Data were extracted independently using standardised forms and synthesised after consensus. Study quality was assessed using the Mixed Methods Appraisal Tool (MMAT). RESULTS A total of 2444 studies were initially found. Fourteen studies met the inclusion criteria, all from high-income countries. The studies included children with a mean age of 9.7 years, and most used appropriate diagnostic criteria and instruments to assess participation with adequate measurement properties. In general, children with DCD have lower levels of participation compared to children with typical development, particularly in physical activities and social participation, with lower engagement in sports teams, leisure and low parental satisfaction. CONCLUSIONS Although findings of decreased participation in children with DCD were consistent, there are gaps in the literature regarding the understanding of home and school participation. Studies that identify contextual determinants of participation are also needed so participation can be effectively promoted.
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Affiliation(s)
| | - Meyene Duque Weber
- Graduate Program in Physical Therapy, Universidade Federal de São Carlos, São Carlos, Brazil
| | - Eloisa Tudella
- Graduate Program in Physical Therapy, Departament of Physical Therapy, Universidade Federal de São Carlos, São Carlos, Brazil
| | - Ana Carolina de Campos
- Graduate Program in Physical Therapy, Departament of Physical Therapy, Universidade Federal de São Carlos, São Carlos, Brazil
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Aljuhani T, Alzahrani SA, Aldosary AM, Alzamil LA, Alshehri RK, Gmmash AS, Albesher RA. Measuring Community and Home Participation and Environmental Factors in Children with Cerebral Palsy. Pediatr Rep 2025; 17:17. [PMID: 39997624 PMCID: PMC11858706 DOI: 10.3390/pediatric17010017] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/24/2024] [Revised: 01/26/2025] [Accepted: 01/29/2025] [Indexed: 02/26/2025] Open
Abstract
Background/Objectives: Children with cerebral palsy (CP) are reported to have lower rates of participation in community and home tasks than typically developing children. Little is known about the participation levels of children with CP and the environmental factors influencing their participation in the community within the Saudi context. This study aimed to determine the degree of participation in community and home tasks in children with CP in Saudi Arabia, as well as the level of support received, and the obstacles faced by children in this context. Methods: Parents of 5-16-year-old children with CP (n = 50) completed the Participation and Environment Measure for Children and Youth (PEM-CY), and their scores were compared with those of typically developing children of the same ages (n = 50). This study was conducted in a hospital setting. Analyses were performed using multivariate logistic regression analyses, controlling for potential confounders. Results: Participation in community activities as well as home activities was reported to be significantly lower in children with CP compared to their typically developing peers in multiple domains (p < 0.05). Additionally, physical, cognitive, and social demands were identified as factors that made community participation more difficult for children with CP (p = 0.002, p = 0.017, and p = 0.029 for physical, cognitive, and social demands, respectively). The availability of personal transportation, programs, services, and financial support were identified by parents as the factors that lowered community participation levels in children with CP (p > 0.005). Conclusions: Physical, cognitive, and social demands are the main obstacles to participation for children with CP. A lack of home supplies and financial support lowered the participation of children with CP. Recognizing environmental barriers as well as providing individualized practical solutions in collaboration with the families of children with CP can assist in developing meaningful participation in community and home activities for children with CP.
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Affiliation(s)
- Turki Aljuhani
- Department of Occupational Therapy, College of Applied Medical Sciences, King Saud Bin Abdulaziz University for Health Sciences, Riyadh 114881, Saudi Arabia; (S.A.A.); (A.M.A.)
- King Abdullah International Medical Research Center, Riyadh 11481, Saudi Arabia; (L.A.A.); (R.K.A.)
| | - Shaden A. Alzahrani
- Department of Occupational Therapy, College of Applied Medical Sciences, King Saud Bin Abdulaziz University for Health Sciences, Riyadh 114881, Saudi Arabia; (S.A.A.); (A.M.A.)
- King Abdullah International Medical Research Center, Riyadh 11481, Saudi Arabia; (L.A.A.); (R.K.A.)
| | - Abeer M. Aldosary
- Department of Occupational Therapy, College of Applied Medical Sciences, King Saud Bin Abdulaziz University for Health Sciences, Riyadh 114881, Saudi Arabia; (S.A.A.); (A.M.A.)
- King Abdullah International Medical Research Center, Riyadh 11481, Saudi Arabia; (L.A.A.); (R.K.A.)
| | - Lana A. Alzamil
- King Abdullah International Medical Research Center, Riyadh 11481, Saudi Arabia; (L.A.A.); (R.K.A.)
- Research and Innovation Unit, College of Applied Medical Sciences, King Saud Bin Abdulaziz University for Health Sciences, Riyadh 11481, Saudi Arabia
| | - Rakan K. Alshehri
- King Abdullah International Medical Research Center, Riyadh 11481, Saudi Arabia; (L.A.A.); (R.K.A.)
- Department of Rehabilitation, King Abdullah Specialized Children’s Hospital, Ministry of National Guard Health Affairs, Riyadh 11426, Saudi Arabia
| | - Afnan S. Gmmash
- Department of Physical Therapy, Faculty of Medical Rehabilitation Sciences, King Abdulaziz University, Jeddah 21589, Saudi Arabia;
| | - Reem A. Albesher
- Department of Rehabilitation Sciences, College of Health and Rehabilitation Sciences, Princess Nourah Bint Abdulrahman University, Riyadh 11671, Saudi Arabia;
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Nascimento AAAC, Souto DO, Oliveira GS, Lima AFBD, Cruz TKF, Haase VG. Family Perspectives on Functional Priorities for Brazilian Children and Adolescents with Cerebral Palsy. Occup Ther Health Care 2025:1-21. [PMID: 39804799 DOI: 10.1080/07380577.2025.2450694] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/25/2024] [Accepted: 01/04/2025] [Indexed: 01/16/2025]
Abstract
This study aimed to identify the functional priorities of parents/guardians of Brazilian children and adolescents with cerebral palsy (CP) and to examine possible variations in priorities concerning different age groups and functional classifications. This cross-sectional study included 171 children with CP (mean age: 7.68 ± 3.32 years). The Canadian Occupational Performance Measure was administered to the families to identify functional priorities. Among the 740 functional priorities identified, activities of daily living (ADLs) were the most frequent, followed by priorities related to body functions, motor skills, and play. The functional priorities were similar across different functional levels and age groups.
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Affiliation(s)
| | - Deisiane Oliveira Souto
- Postgraduate Program in Rehabilitation Sciences, Federal University of Minas Gerais, Belo Horizonte, Brazil
| | - Gabriela Silva Oliveira
- Postgraduate Program in Rehabilitation Sciences, Federal University of Minas Gerais, Belo Horizonte, Brazil
| | | | | | - Vitor Geraldi Haase
- Postgraduate Program in Neuroscience, Federal University of Minas Gerais, Belo Horizonte, Brazil
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Veldhorst C, Wijnen M, Kef S, Vervloed MPJ, Steenbergen B. Participation of teenagers with vision or motor impairments in leisure activities: a qualitative study. FRONTIERS IN REHABILITATION SCIENCES 2024; 5:1444901. [PMID: 39655184 PMCID: PMC11625804 DOI: 10.3389/fresc.2024.1444901] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Subscribe] [Scholar Register] [Received: 06/06/2024] [Accepted: 10/11/2024] [Indexed: 12/12/2024]
Abstract
Purpose Participation in everyday life activities is important for the development of children and is an important topic in rehabilitation practices. This qualitative study aimed to unveil the perspectives and experiences of teenagers with vision impairments (VIs) or motor impairments (MIs) regarding their participation in leisure activities. Materials and methods 13 teenagers with VIs and 12 teenagers with MIs (age range: 11-15 years) participated in this study. Data were collected using semi-structured interviews. Verbatim transcripts were analyzed following the steps of the phenomenological approach. Results A total of 623 significant statements were identified and assigned to 221 meaning units. Finally, 13 themes emerged. Teenagers with VIs and MIs shared many experiences and perspectives regarding participation in leisure activities. Conclusions Teenagers reported that they can sufficiently indicate what they experience as pleasant and sufficient considering their participation, as well as the challenges they encountered, such as their impairment, limited transport possibilities, or concerns from parents. Overall, teenagers with VIs or MIs were generally satisfied with the degree and frequency of their participation in leisure activities and felt sufficiently involved.
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Affiliation(s)
- Carlijn Veldhorst
- Behavioural Science Institute, Radboud University, Nijmegen, Netherlands
| | | | - Sabina Kef
- Faculty of Social and Behavioural Sciences, University of Amsterdam, Amsterdam, Netherlands
| | | | - Bert Steenbergen
- Behavioural Science Institute, Radboud University, Nijmegen, Netherlands
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Ryan M, Shahin S, Waisman-Nitzan M, Anaby D. Is the Y-PEM useful for me? Perspectives of youth with visual impairment. Disabil Rehabil 2024; 46:5076-5086. [PMID: 38084722 DOI: 10.1080/09638288.2023.2291553] [Citation(s) in RCA: 1] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/15/2023] [Accepted: 12/01/2023] [Indexed: 10/16/2024]
Abstract
PURPOSE To explore how youth with visual impairments perceive the usefulness of the Y-PEM (Youth and Young-adult Participation and Environment Measure) in capturing their participation and how information generated contributes to their understanding of participation experiences. MATERIALS AND METHODS A qualitative descriptive design was employed among 11 youth with visual impairment (3 females, 8 males) aged 17-24 (x¯ = 21, SD = 2.6) involving two remote sessions one week apart. First, the Y-PEM and QQ-10 questionnaire were administered to evaluate Y-PEM's utility (value and burden), analyzed descriptively. Then, youth reflected on their Y-PEM results via an individual semi-structured Stimulated Recall Interview (SRI), analyzed thematically. RESULTS A mean value-score of 77% (SD = 10.4) and burden-score of 19% (SD = 5.6) on the QQ-10 indicated the Y-PEM was perceived as valuable with relatively low burden. Three themes emerged from the interviews. Insights on participation revealed increased awareness of participation patterns and environmental factors. This led to a reflection on personal attributes about levels of comfort and familiarity, efforts required to participate, and personal preferences influencing participation experiences. Finally, approaches to participation elucidated strategies used in decision-making processes about pursuing participation. CONCLUSION Findings suggest the Y-PEM is useful in capturing and promoting reflection of youth's participation patterns and environmental supports/barriers.
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Affiliation(s)
- Mallory Ryan
- School of Physical and Occupational Therapy, McGill University, Montreal, Canada
- Centre for Interdisciplinary Research in Rehabilitation, CIUSSS du Centre-Sud-de-l'^Ile-de-Montreal, Montreal, Canada
| | - Saeideh Shahin
- School of Physical and Occupational Therapy, McGill University, Montreal, Canada
- Centre for Interdisciplinary Research in Rehabilitation, CIUSSS du Centre-Sud-de-l'^Ile-de-Montreal, Montreal, Canada
| | | | - Dana Anaby
- School of Physical and Occupational Therapy, McGill University, Montreal, Canada
- Centre for Interdisciplinary Research in Rehabilitation, CIUSSS du Centre-Sud-de-l'^Ile-de-Montreal, Montreal, Canada
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Ayupe KMA, Galvão ÉRVP, Cazeiro APM, Anaby D, Teplicky R, Lopes PB, Massetti T, de Oliveira AKC, de Campos AC, Longo E. Participation and environment measure - children and youth: PEM-CY Brazil measurements properties. Braz J Phys Ther 2024; 28:101103. [PMID: 39094214 PMCID: PMC11345649 DOI: 10.1016/j.bjpt.2024.101103] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/14/2023] [Revised: 03/04/2024] [Accepted: 07/11/2024] [Indexed: 08/04/2024] Open
Abstract
BACKGROUND Participation of children with disabilities is an indicator of social inclusion, health, and well-being, and its evaluation needs to be included in the clinical practice of rehabilitation professionals. OBJECTIVES To investigate the measurement properties of the Participation and Environment Measure - Children and Youth Brazilian version (PEM-CY Brazil). METHODS We used the PEM-CY to evaluate participation and environment of children with and without disabilities in the home, school, and community settings. Based on COSMIN guidelines, we analyzed two measurement properties: internal consistency for all domains using Cronbach's alpha; and construct (known-groups) validity, i.e., the degree to which instrument scores identify differences between groups. T-tests, Mann-Whitney, or Chi-square tests compared children with and without disabilities. RESULTS 101 Brazilian children (mean age=9.31 years) with (n = 62) and without (n = 39) disabilities were included. Internal consistency ranged from appropriate (0.70) to excellent (0.95) for all domains in all settings, except for Resources in the environment of the home setting (0.53). Regarding construct validity, PEM-CY participation scores were significantly different between groups in most domains. Children with disabilities were significantly less involved and participated in a smaller number of activities in all settings, in comparison to those without disabilities. The PEM-CY scores in all settings of the environment were significantly higher in the group of children without disabilities. CONCLUSION Preliminary support was provided for the internal consistency and construct (known-groups) validity of the PEM-CY Brazil to measure participation and the environment in the Brazilian context. The PEM-CY can therefore be used by rehabilitation professionals in Brazil.
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Affiliation(s)
- Kennea Martins Almeida Ayupe
- Department of Integrated Health Education, Health Sciences Center, Universidade Federal do Espírito Santo, Vitória, Espírito Santo, Brazil.
| | | | | | - Dana Anaby
- School of Physical and Occupational Therapy, McGill University, Montreal, QC, Canada
| | - Rachel Teplicky
- CanChild Center for Childhood Disability Research, McMaster University, Hamilton, ON, Canada
| | | | - Thais Massetti
- Centro Universitário São Camilo - Campus Ipiranga, São Paulo, SP, Brazil
| | | | - Ana Carolina de Campos
- Postgraduate Program in Physical Therapy, Universidade Federal de São Carlos, São Carlos, São Paulo, Brazil
| | - Egmar Longo
- Department of Physical Therapy, Health Sciences Center, Universidade Federal da Paraíba, João Pessoa, Paraíba, Brazil
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Kaelin VC, Anaby D, Werler MM, Khetani MA. School participation among young people with craniofacial microsomia and other childhood-onset disabilities. Dev Med Child Neurol 2024; 66:939-947. [PMID: 37138446 PMCID: PMC10622330 DOI: 10.1111/dmcn.15628] [Citation(s) in RCA: 3] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/02/2022] [Revised: 03/22/2023] [Accepted: 03/24/2023] [Indexed: 05/05/2023]
Abstract
AIM To examine how school environment, physical functioning problems, and behavioral problems explain levels of school participation (i.e. attendance and involvement) among young people with craniofacial microsomia (CFM) and other childhood-onset disabilities, and whether participation-focused caregiver strategies play a role in these relationships. METHOD We conducted secondary analyses of a subset of data (n = 260 families: 120 with CFM and 140 with other childhood-onset disabilities) from the second follow-up phase of a longitudinal cohort study. We applied structural equation modeling with data collected from the Participation and Environment Measure - Children and Youth version, the Child Behavior Checklist, and the Pediatric Quality of Life Inventory physical functioning scale. RESULTS Model fit was acceptable to close (comparative fit index = 0.973; root mean square error of approximation = 0.055; standardized root mean squared residual = 0.043; Tucker-Lewis index = 0.958). School environmental support had a positive effect on young people's participation attendance and involvement, and physical functioning problems had a negative effect on participation involvement. The number of disclosed caregiver strategies had a significant positive effect on the relationship between school environmental support and school participation attendance. INTERPRETATION Findings confirm the effect of school environmental support and physical functioning problems on school participation and highlight the role of participation-focused caregiver strategies to intensify the positive effect of school environmental support on school participation attendance. WHAT THIS PAPER ADDS Environmental support had a positive effect on participation attendance and involvement. Physical functioning problems had a negative effect on school participation involvement. Disclosed caregiver strategies intensified the impact of environmental support on participation attendance.
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Affiliation(s)
- Vera C Kaelin
- Occupational Therapy, University of Illinois Chicago, Chicago, USA
- Computer Science, University of Illinois Chicago, Chicago, USA
| | - Dana Anaby
- School of Physical and Occupational Therapy, McGill University, Montreal, Canada
- CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Canada
| | | | - Mary A Khetani
- Occupational Therapy, University of Illinois Chicago, Chicago, USA
- CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Canada
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Thevarajah A, Wallen M, Imms C, Lonsdale C, Carey JJ, Froude EH. Impact of adapted bicycle riding on outcomes for children and adolescents with disabilities: A systematic review. Dev Med Child Neurol 2023; 65:456-468. [PMID: 36335550 DOI: 10.1111/dmcn.15446] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/31/2022] [Revised: 09/26/2022] [Accepted: 09/28/2022] [Indexed: 11/07/2022]
Abstract
AIM To review the evidence for the effects of adapted bicycle riding on body structures and functions, activity, participation, and quality of life outcomes in children with disabilities, along with family-level participation outcomes. METHOD A systematic review with searches of nine electronic databases to identify studies involving participants with a developmental disability aged 4 to 18 years who used a dynamic adapted bicycle was completed in August 2021. Risk of bias was assessed based on individual study designs. A narrative synthesis integrated the findings of the included studies. Certainty of evidence was synthesized using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach. RESULTS Ten studies were included with 234 participants. Five studies reported outcomes at the body structures and functions level, ten reported activity-level outcomes, two reported participation-related outcomes, and none assessed quality of life or family participation in social and recreational activities. INTERPRETATION Adapted bicycle riding interventions may improve gross motor function, enhance lower-limb muscle strength, and promote physical activity; however, certainty of evidence of effects was rated very low using GRADE. Further research is required to understand the impact of adapted bicycle riding on the participation outcomes of children and adolescents with disabilities and on family-level participation in social and recreational activities. WHAT THIS PAPER ADDS Adapted bicycle riding interventions may improve motor functions and physical activity. Evidence about participation outcomes after adapted bicycle riding is limited. Research on adapted bicycle riding interventions in natural settings is needed.
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Affiliation(s)
- Abiramy Thevarajah
- School of Allied Health, Faculty of Health Sciences, Australian Catholic University, NSW, Australia
| | - Margaret Wallen
- School of Allied Health, Faculty of Health Sciences, Australian Catholic University, NSW, Australia
| | - Christine Imms
- Department of Paediatrics, University of Melbourne, VIC, Melbourne, Australia
- Murdoch Children's Research Institute, VIC, Melbourne, Australia
| | - Chris Lonsdale
- Institute for Positive Psychology and Education, Faculty of Health Sciences, Australian Catholic University, NSW, Australia
| | - John J Carey
- Department of Physiotherapy, University of Melbourne, VIC, Melbourne, Australia
| | - Elspeth H Froude
- School of Allied Health, Faculty of Health Sciences, Australian Catholic University, NSW, Australia
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Golos A, Zyger C, Lavie-Pitaro Y, Anaby D. Improving Participation among Youth with Disabilities within Their Unique Socio-Cultural Context during COVID-19 Pandemic: Initial Evaluation. INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH 2023; 20:3913. [PMID: 36900924 PMCID: PMC10002320 DOI: 10.3390/ijerph20053913] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Figures] [Subscribe] [Scholar Register] [Received: 11/28/2022] [Revised: 02/16/2023] [Accepted: 02/20/2023] [Indexed: 06/18/2023]
Abstract
BACKGROUND Participation in meaningful activities is important for quality of life among youth with disabilities; yet participation is often restricted during adverse times. This study aimed to explore the effectiveness of the Pathways and Resources for Engagement and Participation (PREP) intervention among ultra-Orthodox Jewish Israeli youth with disabilities during the COVID-19 pandemic. METHODS A 20-week single-subject research design with multiple baselines measuring participation goals/activities was employed with two youths (15 and 19 years old) combining quantitative and qualitative descriptive data. Changes in participation levels were measured biweekly using the Canadian Occupational Performance Measure; COPM; participation patterns were measured using the Participation and Environment Measure-Children and Youth; PEM-CY pre- and post-intervention; parents' satisfaction was measured using the Client Satisfaction Questionnaire, CSQ-8. Semi-structured interviews were conducted post-intervention. RESULTS Both participants significantly improved participation in all selected goals and participation patterns, and were highly satisfied with the intervention. The interviews revealed additional information on personal and environmental barriers, factors supporting intervention, and intervention effects. CONCLUSIONS The results indicated that an environment-centered and family-centered approach can potentially improve the participation of youths with disabilities within their unique socio-cultural context, during adverse times. Flexibility, creativity, and collaboration with others also contributed to intervention success.
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Affiliation(s)
- Anat Golos
- School of Occupational Therapy, Faculty of Medicine, Hebrew University, Jerusalem 91240, Israel
| | - Chani Zyger
- School of Occupational Therapy, Faculty of Medicine, Hebrew University, Jerusalem 91240, Israel
| | - Yael Lavie-Pitaro
- School of Occupational Therapy, Faculty of Medicine, Hebrew University, Jerusalem 91240, Israel
| | - Dana Anaby
- School of Physical and Occupational Therapy, McGill University, Montreal, QC H3G 1Y5, Canada
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Africa LE, Human A, Tshabalala MD. Participation patterns of children with cerebral palsy: A caregiver's perspective. Afr J Disabil 2023; 12:1058. [PMID: 36756463 PMCID: PMC9900282 DOI: 10.4102/ajod.v12i0.1058] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/16/2022] [Accepted: 10/10/2022] [Indexed: 02/04/2023] Open
Abstract
Background Participation in activities of daily living (ADL), education, leisure and play in children living with cerebral palsy (CP) may be affected by various factors, as outlined in the International Classification of Functioning, Disability and Health Framework (ICF). The aim of this study was to describe the participation patterns of a group of these children. Objectives This study aimed to describe participation patterns in ADL, education, leisure and play activities of children living with CP in Modimolle. Method An exploratory-descriptive qualitative (EDQ) study design was used. A researcher-constructed bio-demographic data sheet and a semi-structured interview schedule were used to collect data from the primary caregivers of children (5-17 years) living with CP in Modimolle. Interviews were transcribed verbatim, translated from Sepedi to English and analysed using the content analysis approach and NVivo software. Results The findings of this study indicated that children living with CP in Modimolle require set-up and assistance to participate in various ADL such as self-care, family and community activities. They also participate in formal and informal educational programmes as well as active and passive leisure and play activities. However, at the moment, they have limited opportunities to participate because of resource constraints and inaccessible infrastructure. Conclusion Although children with CP in Modimolle perform some ADL, and participate in educational, leisure and play activities, they are not fully integrated into their community. Legislative support and policy implementation are required to improve participation and integration of children living with CP. Further studies on community-specific integrative strategies to enhance participation among children living with disabilities are recommended. Contribution This paper provides valuable information on the participation patterns of children with CP living in a rural area of South Africa. The findings can assist with development and implementation of community-specific, integrative health and social care strategies to enhance participation among children living with disabilities.
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Affiliation(s)
- Lethabo E. Africa
- Department of Physiotherapy, Faculty of Healthcare Sciences, Sefako Makgatho Healthcare Sciences University, Pretoria, South Africa
| | - Anri Human
- Department of Physiotherapy, Faculty of Healthcare Sciences, Sefako Makgatho Healthcare Sciences University, Pretoria, South Africa,Department of Physiotherapy, Faculty of Health Sciences, University of Pretoria, Pretoria, South Africa
| | - Muziwakhe D. Tshabalala
- Department of Physiotherapy, Faculty of Healthcare Sciences, Sefako Makgatho Healthcare Sciences University, Pretoria, South Africa
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Wagner V, Peixoto EM, de Oliveira LP. Basic Psychological Needs, Leisure, and Quality of Life for Wheelchair Users. TRENDS IN PSYCHOLOGY 2022. [DOI: 10.1007/s43076-022-00222-2] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 12/12/2022]
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Souza RAD. Alcançando o lazer na entrevista médica. REVISTA BRASILEIRA DE MEDICINA DE FAMÍLIA E COMUNIDADE 2022. [DOI: 10.5712/rbmfc17(44)3470] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/11/2022] Open
Abstract
A entrevista médica resume-se a organizar as informações do paciente em algoritmo médico para possibilitar as decisões e organizar o registro. O lazer é informação fundamental para compreender o contexto do sujeito. A relação da cultura com o lazer cria a necessidade de percebermos que, dependendo do lugar e do tempo, haverá algumas atividades prescritas e proscritas de lazer. Para manter uma vida ativa e de qualidade, faz-se necessário que o paciente precise, algumas vezes, da prescrição ou proscrição do lazer, que é muito mais amplo do que atividades físicas. Como possibilitar que isso ocorra e o que deve ser procurado para melhor compreender isso? O que é lazer e quais as suas formas de prescrição?
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14
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Lu X, Zhao X, Zhao X. How Does Smartphone Usage Feedback Influence Mobility Behavior? JOURNAL OF COMPUTER INFORMATION SYSTEMS 2022. [DOI: 10.1080/08874417.2022.2098879] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 10/16/2022]
Affiliation(s)
- Xiaoni Lu
- School of Management, Xi’an Jiaotong University, Xi’an, Shaanxi, China
| | - Xia Zhao
- Terry College of Business, The University of Georgia, Athens, GA, USA
| | - Xi Zhao
- School of Management, Xi’an Jiaotong University, Xi’an, Shaanxi, China
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Knudsen M, Stadskleiv K, O'Regan E, Alriksson-Schmidt AI, Andersen GL, Hollung SJ, Korsfelt Å, Ödman P. The implementation of systematic monitoring of cognition in children with cerebral palsy in Sweden and Norway. Disabil Rehabil 2022:1-10. [PMID: 35793099 DOI: 10.1080/09638288.2022.2094477] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/03/2022]
Abstract
PURPOSE Children with cerebral palsy (CP) are at risk of cognitive impairments and need to be cognitively assessed to allow for individualized interventions, if applicable. Therefore, a systematic protocol for the follow-up of cognition in children with CP, CPCog, with assessments offered at five/six and 12/13 years of age, was developed. This report presents and discusses assessment practices in Sweden and Norway following the introduction of CPCog and a quality improvement project in Norway aimed at increasing the number of children offered cognitive assessments. MATERIALS AND METHODS A questionnaire investigating assessment practices was sent to pediatric habilitation centers in Sweden and Norway. In Norway, the habilitation centers also participated in a quality improvement project aimed at increasing adherence to the CPCog protocol. RESULTS Of the respondents, 64-70% report that they assess cognition in children with all degrees of motor impairment, and 70-80% assess at the ages recommended in CPCog. Following the quality improvement project in Norway, the percentage of children assessed increased from 34 to 62%. CONCLUSIONS The findings illustrate that the provision of information is not sufficient to change practice. Implementation of new re/habilitation procedures is aided by targeting health care practices individually.Implications for rehabilitationChildren with cerebral palsy (CP) have increased risk of cognitive impairments that require intervention.Assessments of cognition should be offered to all children with CP because the nature of cognitive impairments may vary.Introducing a follow-up protocol of how and when to perform cognitive assessments is a step towards ensuring equal access to the services for all children with CP.A quality improvement project might be a viable method for implementing a protocol into everyday clinical practice.
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Affiliation(s)
- Maja Knudsen
- Department of Clinical Neurosciences for Children, Oslo University Hospital, Oslo, Norway
| | - Kristine Stadskleiv
- Department of Clinical Neurosciences for Children, Oslo University Hospital, Oslo, Norway.,Department of Special Needs Education, University of Oslo, Oslo, Norway
| | - Elisabeth O'Regan
- Department of Clinical Sciences Lund, Orthopaedics, Lund University, Lund, Sweden
| | | | - Guro L Andersen
- Norwegian Quality and Surveillance Registry for Cerebral Palsy (NorCP), Vestfold Hospital Trust, Tønsberg, Norway
| | - Sandra Julsen Hollung
- Norwegian Quality and Surveillance Registry for Cerebral Palsy (NorCP), Vestfold Hospital Trust, Tønsberg, Norway
| | - Åsa Korsfelt
- Habilitation Centre, Ryhov County Hospital, Jönköping, Sweden
| | - Pia Ödman
- Department of Health, Medicine and Caring Sciences, Physiotherapy, Linköping University, Linköping, Sweden
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16
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Life satisfaction and athletic identity among Olympic para-alpine skiers: a survey. Int J Rehabil Res 2022; 45:267-272. [PMID: 35777736 DOI: 10.1097/mrr.0000000000000539] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/25/2022]
Abstract
The objective of this study was to examine life satisfaction and athletic identity among para-alpine skiers and explore their associations with sociodemographic, sports practice, and disability-related characteristics of the participants. The respondents to the on-site survey were 129 para-alpine ski racers with acquired disability from 33 countries on all five continents who competed in the Paralympic games in Sochi (aged 16-53 years, mean and median 30 years, 100 men). Two self-developed assessment instruments were used - a 7-point Likert-type life-satisfaction questionnaire probing seven domains (health, family, education, freedom, friends, travelling, and self) and the Athletic Identity Scale (AIS; possible score range 17-85). The independence between life-satisfaction items was confirmed by low interitem correlations (largest absolute value <0.25, 15 of 21, and <0.15). The estimated internal-consistency reliability (Guttman lambda-2) of AIS was 0.65. The reported life satisfaction was very high (median of 6 for all domains except education, where it was 5). Like life-satisfaction ratings, the AIS scores were also very high on average (mean and median score 81). In general, the level of life satisfaction and athletic identity were not notably associated with sociodemographic, sports practice, and disability characteristics of the participants. The likely reason is high average and, hence, low variability of life-satisfaction ratings, as well as imperfect metric characteristics of the AIS. Nonetheless, the overall findings encourage further research into factors that drive the participation of disabled athletes in (winter) Paralympic games and the possible role of the rehabilitation process in this regard.
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Choi PH, Ma PS, Mak WY, Mok NP, Cynthia Lai YY, Chien CW. Participation of children with and without disabilities in home, school, and community in Hong Kong: A 2-year longitudinal study. Hong Kong J Occup Ther 2022; 35:71-83. [PMID: 35847186 PMCID: PMC9279873 DOI: 10.1177/15691861221087274] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/17/2022] Open
Abstract
Background Children with disabilities are reported to participate less in activities than their typically developing peers. However, owing to limited longitudinal studies, improvements or deteriorations in their participation over time remain unclear. No studies were also conducted in Hong Kong to describe children’s activity participation over time. Aim To investigate the changes in participation patterns of Hong Kong children with and without disabilities. Methods Thirty-four children with disabilities and 138 without disabilities were recruited from four schools. Their parents completed the Participation and Environment Measure for Children and Youth twice over 2 years. Results After 2 years, both groups of children were found to engage more frequently in using electronic devices and less frequently in indoor play activities/games at home. They also participated more often in school extra-curriculum activities, events and field trips. However, the frequency of community activities remained relatively stable in the two groups. No changes in their levels of involvement in almost of home, school and community activities were identified. Conclusion The findings of increased participation in some home and school activities over time are encouraging. However, stable or possibly decreased participation of children with disabilities in other activities requires further efforts in promoting their participation.
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Affiliation(s)
- Pak-Ho Choi
- Department of Rehabilitation Sciences, The Hong Kong Polytechnic University, Hong Kong, China
| | - Pui-Sze Ma
- Department of Rehabilitation Sciences, The Hong Kong Polytechnic University, Hong Kong, China
| | - Wai-Ying Mak
- Department of Rehabilitation Sciences, The Hong Kong Polytechnic University, Hong Kong, China
| | - Nga-Pan Mok
- Department of Rehabilitation Sciences, The Hong Kong Polytechnic University, Hong Kong, China
| | - Yuen Yi Cynthia Lai
- Department of Rehabilitation Sciences, The Hong Kong Polytechnic University, Hong Kong, China
| | - Chi-Wen Chien
- Department of Rehabilitation Sciences, The Hong Kong Polytechnic University, Hong Kong, China
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18
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van der Linden ML, Wordie SJ, Dufton BK, Jagadamma KC, Hunter C, Mercer TH, Gaston MS, Robb JE. Leisure Time Physical Activity in Children and Young People With Cerebral Palsy: A Population-Based Study. Pediatr Phys Ther 2022; 34:230-237. [PMID: 35385459 DOI: 10.1097/pep.0000000000000882] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/26/2022]
Abstract
PURPOSE To describe leisure time physical activity in children and young people with cerebral palsy and identify barriers and facilitators to participation. METHODS Leisure time physical activity participation was derived from a national cerebral palsy register and associated factors were analyzed. Barriers and facilitators to participation were investigated through a survey. RESULTS Leisure time physical activity participation was recorded. Outcomes of participation decreased with increasing Gross Motor Function Classification System level. Leisure time physical activity "not in club" for 11- to 18-year-olds was significantly lower than for those aged 5 to 10 years for Gross Motor Function Classification System level II. The survey supported that disability and disliking help were common barriers and parental encouragement and enjoyment were common facilitators. CONCLUSIONS Data from the register and survey provide insight into factors influencing leisure time physical activity participation in young people with cerebral palsy and how to increase.
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Affiliation(s)
- Marietta L van der Linden
- Centre for Health, Activity and Rehabilitation Research (Drs van der Linden, Jagadamma, and Mercer and Ms Dufton), Queen Margaret University Edinburgh, Musselburgh, United Kingdom; Royal Hospital for Sick Children (Drs Wordie and Gaston and Ms Hunter), Edinburgh, United Kingdom; School of Medicine (Dr Robb), University of St Andrews, St Andrews, United Kingdom
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Yoo PY, Movahed M, Rue I, Santos CDD, Majnemer A, Shikako K. Changes in Use of a Leisure Activity Mobile App for Children With Disabilities During the COVID-19 Pandemic: Retrospective Study. JMIR Pediatr Parent 2022; 5:e32274. [PMID: 35100129 PMCID: PMC8887559 DOI: 10.2196/32274] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/20/2021] [Revised: 10/31/2021] [Accepted: 12/17/2021] [Indexed: 01/23/2023] Open
Abstract
BACKGROUND Participation in leisure activities is essential for child development and a human right as per the United Nations Convention on the Rights of the Child. Children with disabilities face several restrictions when participating in leisure activities as compared to same age peers without disabilities. Access to information about accessible, inclusive leisure activities is one of the barriers limiting participation, and one potential health promotion strategy is to provide access to information to increase participation. The Jooay App is a mobile app listing such activities in Canada and Australia. With the COVID-19 global pandemic and subsequent public health measures, most community-based facilities providing the activities listed on Jooay were closed. The app therefore started listing online activities offered with the expectation of continuing to provide information for families and understanding the extent to which users relied on the mobile app as a tool to identify new safe leisure opportunities. OBJECTIVE This study aims to describe the engagement of the Jooay app before and during COVID-19, and to estimate the extent to which the listing of online activities was related to the engagement of the Jooay app. METHODS We conducted a retrospective study comparing Jooay app use between March 2020 and February 2021 to the engagement between March 2019 and February 2020 by Jooay users. Spearman rank correlations were carried out to identify associations between the activities listed and the users' engagement from May 2020 to February 2021. RESULTS Active engagement with the Jooay app from March 2020 to February 2021 dropped by an average of 135 engagements (64.2%) compared to engagements in 2019-2020. The largest monthly drop in engagement was observed in May 2020 by 239 engagements (88.8%). There was a strong positive correlation between the number of active users and the number of online activities listed on the app (rs=0.900). CONCLUSIONS The engagement with the Jooay App presented an expected decrease during the first wave of the COVID-19 pandemic. The addition of online adapted leisure activities to the app's listings during the pandemic increased app use. Access to information about inclusive activities is a barrier for children with disabilities to engage in leisure. Mobile health solutions can be responsive to contextual factors and consider the social determinants of health such as socioeconomic and public health emergency issues that can impact the participation of vulnerable populations such as children with disabilities and help eliminate barriers to participation. The provision of online leisure opportunities during the pandemic could facilitate participation in these activities during the pandemic and beyond, which is essential and beneficial for the physical and mental well-being of children with disabilities and their families.
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Affiliation(s)
- Paul Yejong Yoo
- Faculty of Medicine and Health Sciences, McGill University, Montreal, QC, Canada
| | - Mehrnoosh Movahed
- Faculty of Medicine and Health Sciences, McGill University, Montreal, QC, Canada
| | - Ishana Rue
- Faculty of Medicine and Health Sciences, McGill University, Montreal, QC, Canada
| | - Carlos Denner Dos Santos
- Management Department, University of Brasilia, Brasilia, Brazil
- Computer Science Department, Ecole de Technologie Supérieure, Montreal, QC, Canada
| | - Annette Majnemer
- Faculty of Medicine and Health Sciences, McGill University, Montreal, QC, Canada
| | - Keiko Shikako
- Faculty of Medicine and Health Sciences, McGill University, Montreal, QC, Canada
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Shin J, Decker B, Blanchard S. Instrumental Activities of Daily Living in Pediatric Occupational Therapy Practice: A Survey of Current Practice Patterns and Perceived Importance. Phys Occup Ther Pediatr 2022; 42:46-61. [PMID: 34148486 DOI: 10.1080/01942638.2021.1932687] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 10/21/2022]
Abstract
AIMS We investigated how instrumental activities of daily living (IADLs) are addressed and perceived, in comparison to activities of daily living (ADLs), across preschool (3-5 years), middle childhood (6-11 years), early adolescence (12-15 years), and older adolescence (16-21 years) age groups by pediatric occupational therapy (OT) practitioners. METHOD 247 OT practitioners with at least 2 years of pediatric work experience in the U.S. completed an electronic survey assessing (a) type of IADLs most frequently addressed and (b) type of IADLs perceived as most important across the age groups. RESULTS With increasing age of children and adolescents with disabilities, frequency and perceived importance of addressing IADLs increased in comparison to ADLs; there was a statistically significant relationship between the frequency and the perceived importance of addressing IADLs for all 12 activities across the age groups. CONCLUSION The decision-making process in addressing IADLs in pediatric OT practice was significantly influenced by the practitioners' perceived importance of IADLs.
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Affiliation(s)
- Julia Shin
- Creighton University, Omaha, Nebraska, USA
| | - Bonnie Decker
- University of St Augustine for Health Sciences, St. Augustine, Florida, USA
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21
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Kaelin VC, Valizadeh M, Salgado Z, Sim JG, Anaby D, Boyd AD, Parde N, Khetani MA. Capturing and Operationalizing Participation in Pediatric Re/Habilitation Research Using Artificial Intelligence: A Scoping Review. FRONTIERS IN REHABILITATION SCIENCES 2022; 3:855240. [PMID: 35919375 PMCID: PMC9340801 DOI: 10.3389/fresc.2022.855240] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 01/14/2022] [Accepted: 03/11/2022] [Indexed: 11/19/2022]
Abstract
Background There is increased interest in using artificial intelligence (AI) to provide participation-focused pediatric re/habilitation. Existing reviews on the use of AI in participation-focused pediatric re/habilitation focus on interventions and do not screen articles based on their definition of participation. AI-based assessments may help reduce provider burden and can support operationalization of the construct under investigation. To extend knowledge of the landscape on AI use in participation-focused pediatric re/habilitation, a scoping review on AI-based participation-focused assessments is needed. Objective To understand how the construct of participation is captured and operationalized in pediatric re/habilitation using AI. Methods We conducted a scoping review of literature published in Pubmed, PsycInfo, ERIC, CINAHL, IEEE Xplore, ACM Digital Library, ProQuest Dissertation and Theses, ACL Anthology, AAAI Digital Library, and Google Scholar. Documents were screened by 2-3 independent researchers following a systematic procedure and using the following inclusion criteria: (1) focuses on capturing participation using AI; (2) includes data on children and/or youth with a congenital or acquired disability; and (3) published in English. Data from included studies were extracted [e.g., demographics, type(s) of AI used], summarized, and sorted into categories of participation-related constructs. Results Twenty one out of 3,406 documents were included. Included assessment approaches mainly captured participation through annotated observations (n = 20; 95%), were administered in person (n = 17; 81%), and applied machine learning (n = 20; 95%) and computer vision (n = 13; 62%). None integrated the child or youth perspective and only one included the caregiver perspective. All assessment approaches captured behavioral involvement, and none captured emotional or cognitive involvement or attendance. Additionally, 24% (n = 5) of the assessment approaches captured participation-related constructs like activity competencies and 57% (n = 12) captured aspects not included in contemporary frameworks of participation. Conclusions Main gaps for future research include lack of: (1) research reporting on common demographic factors and including samples representing the population of children and youth with a congenital or acquired disability; (2) AI-based participation assessment approaches integrating the child or youth perspective; (3) remotely administered AI-based assessment approaches capturing both child or youth attendance and involvement; and (4) AI-based assessment approaches aligning with contemporary definitions of participation.
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Affiliation(s)
- Vera C. Kaelin
- Rehabilitation Sciences, University of Illinois at Chicago, Chicago, IL, United States
- Children's Participation in Environment Research Lab, University of Illinois at Chicago, Chicago, IL, United States
| | - Mina Valizadeh
- Computer Science, University of Illinois at Chicago, Chicago, IL, United States
- Natural Language Processing Laboratory, University of Illinois at Chicago, Chicago, IL, United States
| | - Zurisadai Salgado
- Children's Participation in Environment Research Lab, University of Illinois at Chicago, Chicago, IL, United States
| | - Julia G. Sim
- Children's Participation in Environment Research Lab, University of Illinois at Chicago, Chicago, IL, United States
| | - Dana Anaby
- School of Physical and Occupational Therapy, McGill University, Montreal, QC, Canada
- CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON, Canada
| | - Andrew D. Boyd
- Rehabilitation Sciences, University of Illinois at Chicago, Chicago, IL, United States
- Biomedical and Health Information Sciences, University of Illinois at Chicago, Chicago, IL, United States
- Physical Therapy, University of Illinois at Chicago, Chicago, IL, United States
| | - Natalie Parde
- Computer Science, University of Illinois at Chicago, Chicago, IL, United States
- Natural Language Processing Laboratory, University of Illinois at Chicago, Chicago, IL, United States
| | - Mary A. Khetani
- Rehabilitation Sciences, University of Illinois at Chicago, Chicago, IL, United States
- Children's Participation in Environment Research Lab, University of Illinois at Chicago, Chicago, IL, United States
- CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON, Canada
- Occupational Therapy, University of Illinois at Chicago, Chicago, IL, United States
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22
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Kaelin VC, Valizadeh M, Salgado Z, Parde N, Khetani MA. Artificial Intelligence in Rehabilitation Targeting the Participation of Children and Youth With Disabilities: Scoping Review. J Med Internet Res 2021; 23:e25745. [PMID: 34734833 PMCID: PMC8603165 DOI: 10.2196/25745] [Citation(s) in RCA: 17] [Impact Index Per Article: 4.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/13/2020] [Revised: 05/21/2021] [Accepted: 09/07/2021] [Indexed: 01/22/2023] Open
Abstract
BACKGROUND In the last decade, there has been a rapid increase in research on the use of artificial intelligence (AI) to improve child and youth participation in daily life activities, which is a key rehabilitation outcome. However, existing reviews place variable focus on participation, are narrow in scope, and are restricted to select diagnoses, hindering interpretability regarding the existing scope of AI applications that target the participation of children and youth in a pediatric rehabilitation setting. OBJECTIVE The aim of this scoping review is to examine how AI is integrated into pediatric rehabilitation interventions targeting the participation of children and youth with disabilities or other diagnosed health conditions in valued activities. METHODS We conducted a comprehensive literature search using established Applied Health Sciences and Computer Science databases. Two independent researchers screened and selected the studies based on a systematic procedure. Inclusion criteria were as follows: participation was an explicit study aim or outcome or the targeted focus of the AI application; AI was applied as part of the provided and tested intervention; children or youth with a disability or other diagnosed health conditions were the focus of either the study or AI application or both; and the study was published in English. Data were mapped according to the types of AI, the mode of delivery, the type of personalization, and whether the intervention addressed individual goal-setting. RESULTS The literature search identified 3029 documents, of which 94 met the inclusion criteria. Most of the included studies used multiple applications of AI with the highest prevalence of robotics (72/94, 77%) and human-machine interaction (51/94, 54%). Regarding mode of delivery, most of the included studies described an intervention delivered in-person (84/94, 89%), and only 11% (10/94) were delivered remotely. Most interventions were tailored to groups of individuals (93/94, 99%). Only 1% (1/94) of interventions was tailored to patients' individually reported participation needs, and only one intervention (1/94, 1%) described individual goal-setting as part of their therapy process or intervention planning. CONCLUSIONS There is an increasing amount of research on interventions using AI to target the participation of children and youth with disabilities or other diagnosed health conditions, supporting the potential of using AI in pediatric rehabilitation. On the basis of our results, 3 major gaps for further research and development were identified: a lack of remotely delivered participation-focused interventions using AI; a lack of individual goal-setting integrated in interventions; and a lack of interventions tailored to individually reported participation needs of children, youth, or families.
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Affiliation(s)
- Vera C Kaelin
- Rehabilitation Sciences, College of Applied Health Sciences, University of Illinois at Chicago, Chicago, IL, United States
- Children's Participation in Environment Research Lab, University of Illinois at Chicago, Chicago, IL, United States
| | - Mina Valizadeh
- Computer Science, College of Engineering, University of Illinois at Chicago, Chicago, IL, United States
- Natural Language Processing Laboratory, University of Illinois at Chicago, Chicago, IL, United States
| | - Zurisadai Salgado
- Children's Participation in Environment Research Lab, University of Illinois at Chicago, Chicago, IL, United States
- Occupational Therapy, College of Applied Health Sciences, University of Illinois at Chicago, Chicago, IL, United States
| | - Natalie Parde
- Computer Science, College of Engineering, University of Illinois at Chicago, Chicago, IL, United States
- Natural Language Processing Laboratory, University of Illinois at Chicago, Chicago, IL, United States
| | - Mary A Khetani
- Rehabilitation Sciences, College of Applied Health Sciences, University of Illinois at Chicago, Chicago, IL, United States
- Children's Participation in Environment Research Lab, University of Illinois at Chicago, Chicago, IL, United States
- Occupational Therapy, College of Applied Health Sciences, University of Illinois at Chicago, Chicago, IL, United States
- CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON, Canada
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Cytera C, Thyen U. ["I Think it is Important in Many Aspects in Life" - Young Adults' Perception of Participation]. REHABILITATION 2021; 60:384-392. [PMID: 34058772 DOI: 10.1055/a-1491-7365] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/21/2022]
Abstract
PURPOSE This study explores young adults' lay perception of participation. It focuses on the definition of the concept and the life areas in which the target group views it as important to take part in. METHODS In guided group interviews (N=6), 20 young adults with and without disabilities were surveyed about their perception of participation. To also include people with more severe disabilities, proxy interviews (N=3) were conducted. The data of the interview were analyzed via qualitative content analysis based on Mayring. RESULTS Participation is understood as being multifaceted and individually different. Six aspects of participation definition could be detected: togetherness; social inclusion/participation in society; open-mindedness/interest; equal opportunities/equal treatment; freedom of choice/autonomy; to have a voice. Besides that, seven areas of participation were mentioned as important for young adults: social environment; work/education; leisure; media; mobility; politics/finances; self-administration. CONCLUSION Within young adults' complex perception of participation, social aspects are particularly important, besides equal rights and autonomy. Participation in sexuality and new media is given a crucial value, which is why these topics should be given more attention to. Life areas in which participation is described as relevant can vary depending on the interests of the individual. This demonstrates the subjective character of the concept, and the importance to consider the perception and preference of a person or a group.
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Affiliation(s)
- Chirine Cytera
- Klinik für Kinder- und Jugendmedizin, Universität zu Lübeck, Deutschland.,Institut für Psychologie, Universität Greifswald, Deutschland
| | - Ute Thyen
- Klinik für Kinder- und Jugendmedizin, Universität zu Lübeck, Deutschland
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Axelsson AK, Ullenhag A, Ödman P. A Swedish cultural adaptation of the participation questionnaire Functional Scale of the Disability Evaluation System - Child version. Disabil Rehabil 2021; 44:1720-1727. [PMID: 33941022 DOI: 10.1080/09638288.2021.1917704] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/21/2022]
Abstract
PURPOSE The aim was to culturally validate a questionnaire about children's/youth's participation to be used in a Swedish context. METHODS FUNDES-Child, based on the well-established CASP, was chosen. Questions about engagement and hindering factors were added to the existing questions about frequency and independence in 20 activity areas. Using a qualitative, explorative design, 16 interviews with children/youths/caregivers were made to explore opinions about the questionnaire. Follow-up interviews confirmed the result of the revised questionnaire. Qualitative content analysis was performed. RESULTS The interviews provided support for the questionnaire's relevance by being a tool to assess important aspects of participation, to gain insights into one's own/the child's participation, and to promote ideas about what causes the degree of participation. To achieve comprehensiveness, no activity area was found to be missing nor superfluous. However, some examples were needed to be modified where "parades" are unusual in Sweden and therefore removed, while "singing in choir" was added. In search for comprehensibility, opinions about the layout of the first version were raised and a varying degree of understanding of wording and concepts were found and thus taken into account. CONCLUSIONS The questionnaire can be used for establishing meaningful goals and to potentially increase children's participation.Implications for rehabilitationParticipation is of great importance for children's functioning, well-being, and development.Cultural validation of well-established participation questionnaires is a priority and questions about important aspects of participation need to be included.Interviews with children/youth and caregivers guided revisions to reach relevance, comprehensiveness, and comprehensibility of the Swedish FUNDES-Child (FUNDES II-SE).Children/youths, caregivers, and others may increase their awareness concerning the child's/youth's participation by responding to the questionnaire.
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Affiliation(s)
| | - Anna Ullenhag
- Academy of Health, Care and Welfare, Mälardalens University, Västerås, Sweden
| | - Pia Ödman
- Department of Medical and Health Sciences, Division of Physiotherapy, Linköping University Hospital, Linköping, Sweden
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25
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Hornáček K, Kujawa J, Varela Donoso E, Dincer F, Ilieva E, Takáč P, Petronic Markovic I, Votava J, Vetra A, Nikolic D, Christodoulou N, Zampolini M, Kiekens C. Evidence Based Position Paper on Physical and Rehabilitation Medicine professional practice for persons with cerebral palsy. Eur J Phys Rehabil Med 2021; 57:1020-1035. [PMID: 33861040 DOI: 10.23736/s1973-9087.21.06983-5] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/08/2022]
Abstract
INTRODUCTION Cerebral palsy (CP) is a group of the most common developmental disorders affecting movement and posture of the body, causing activity limitations and participation restrictions. The motor disorders of persons with CP are often accompanied by disturbances of sensation, cognition, communication and perception. The symptoms of CP are very diverse and persons with CP are usually presented with a mixed type of symptoms. The non-progressive disturbances can be attributed to disorders that were developed during pregnancy, birth and/or infant stage. AIM The aim of this study was to improve Physical and Rehabilitation Medicine physician´s professional practice for persons with cerebral palsy in order to improve their functionality, social and community integration, and to reduce activity limitations and/or participation restrictions. MATERIAL AND METHODS A systematic review of the literature including an eighteen-year period and consensus procedure by means of a Delphi process was performed and involved the delegates of all European countries represented in the Union of European Medical Specialists Physical and Rehabilitation Medicine (UEMS PRM) Section. RESULTS As the result of a Consensus Delphi procedure process 74 recommendations are presented together with the systematic literature review. CONCLUSIONS The PRM physician´s role for persons with cerebral palsy is to lead and coordinate the multiprofessional team, working in an interdisciplinary way. They should propose and manage the complex but individual PRM programme developed in conjunction with other health professionals, medical specialists and importantly in agreement with the patient, their family and care giver. This should be, according to the specific medical diagnosis to improve patients´ health, functioning, social and education status, considering all impairments, comorbidities and complications, activity limitations and participation restrictions.
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Affiliation(s)
- Karol Hornáček
- Department of Physical and Rehabilitation Medicine, Faculty of Medicine, Slovak Medical University, Bratislava, Slovakia
| | - Jolanta Kujawa
- Department of Physical and Rehabilitation Medicine, Medical University of Lodz, Lodz, Poland
| | - Enrique Varela Donoso
- Physical and Rehabilitation Medicine Department, Complutense University of School of Medicine, Madrid, Spain
| | - Fitnat Dincer
- Department of Physical and Rehabilitation Medicine, Faculty of Medicine, Hacettepe University, Ankara, Turkey
| | - Elena Ilieva
- Department of Physical and Rehabilitation Medicine, Medical Faculty, Medical University of Plovdiv, Plovdiv, Bulgaria
| | - Peter Takáč
- Department of Physical and Rehabilitation Medicine, L. Pasteur University Hospital, Faculty of Medicine, Pavol Jozef Šafárik University, Košice, Slovak Republic -
| | - Ivana Petronic Markovic
- Department of Physical and Rehabilitation Medicine, Faculty of Medicine, University of Belgrade, Belgrade, Serbia
| | - Jiří Votava
- Faculty of Health Studies, University of J. E. Purkyně, Ústí nad Labem, Czech Republic
| | - Anita Vetra
- Rehabilitation Department, Riga Stradins University, Riga, Latvia
| | - Dejan Nikolic
- Department of Physical and Rehabilitation Medicine, Faculty of Medicine, University of Belgrade, Belgrade, Serbia
| | | | - Mauro Zampolini
- Department of Rehabilitation, Foligno Hospital, USL Umbria 2, Perugia, Italy
| | - Carlotte Kiekens
- Spinal Unit, Montecatone Rehabilitation Institute, Imola Bologna, Italy
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Kruse Gyldhof D, Stahlhut M, Waehrens EE. Participation and engagement in family activities among girls and young women with Rett syndrome living at home with their parents - a cross-sectional study. Disabil Rehabil 2021; 44:3650-3660. [PMID: 33621156 DOI: 10.1080/09638288.2021.1878394] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/22/2022]
Abstract
PURPOSE To describe the extent of participation and engagement in family activities and explore variables potentially impacting on these factors in family activities among girls and young women with Rett syndrome (RTT) under the age of 21. MATERIALS AND METHODS The Child Participation in Family Activities (Child-PFA) questionnaire was sent to parents in the target group (n = 42). Additionally, age, number of siblings at home, ambulation level, clinical severity and level of hand function were recorded to explore possible impact. Data were analyzed using descriptive statistics, Fishers exact test and cross-tables. RESULTS 23 families participated. Highest degrees of participation and engagement were seen in social and stationary family activities. Indoor activities were frequent and showed high levels of participation and engagement, Outdoor activities were infrequent and showed low levels of participation despite a high degree of engagement. Routine activities were frequent but showed moderate to low participation and engagement. A negative association was found between participation in watching a movie and number of siblings living at home, and positive associations between engagement and age in three family activities. CONCLUSION Therapists working with this target group may benefit from focusing on engagement in routine activities and modification of family activities.IMPLICATIONS FOR REHABILITATIONTherapists may benefit from focusing on engagement in routine activities in the goal setting process and intervention as they occur on a daily basis, giving the opportunity for development of new skills.Therapists may benefit from focusing on assistive devices or other compensatory strategies for outdoor activities and activities that require a certain amount of hand function.Therapists may benefit from modifying the family's activities so that they require more social and mental participation and focus on experiencing different types of sensory input e.g., sound, tactile, visual or vestibular input rather than taking part in the activity by using their hands.
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Affiliation(s)
- Ditte Kruse Gyldhof
- Department of Occupational Therapy, Department of Midwifery, Physiotherapy, Occupational Therapy and Psychomotor Therapy, University College Copenhagen, Copenhagen, Denmark
| | - Michelle Stahlhut
- Department of Paediatrics and Adolescent Medicine, Center for Rett Syndrome, Rigshospitalet, Copenhagen, Denmark
| | - Eva Ejlersen Waehrens
- The ADL Unit, The Parker Institute, Copenhagen University hospital, Bispebjerg and Frederiksberg, Copenhagen, Denmark.,The Research Initiative for Activity Studies and Occupational Therapy, Research Unit of User Perspectives, Department of Public Health, University of Southern Denmark, Odense, Denmark
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Arfa S, Solvang PK, Berg B, Jahnsen R. Challenges and facilitators in supporting sustainable participation after rehabilitation: Experiences of immigrant parents and their children with disabilities. Scand J Occup Ther 2020; 29:631-644. [PMID: 33300814 DOI: 10.1080/11038128.2020.1856183] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/22/2022]
Abstract
BACKGROUND Children with immigrant backgrounds and disabilities have lower rates of social participation compared with their non-immigrant counterparts. However, rehabilitation programmes offer an opportunity to promote a physically active lifestyle and increase home and community participation of children with disabilities. OBJECTIVES By exploring immigrant families' experiences of participation and associated challenges and facilitators after rehabilitation, the study intended to contribute to the development of potential pathways in supporting sustainable community-based participation. METHODS The study used a qualitative approach with semi-structured interviews. RESULTS The costs and lack of information, necessary skills, and local activities were among the barriers that families experienced after the rehabilitation. Local and rehabilitation professionals were not always aware of or prepared to address the challenges faced by families trying to become physically active. Parents expressed their needs for support and continuation of services after rehabilitation for moving towards an active lifestyle. Participation patterns among children highlighted the potential role of support contacts as facilitators for participation in physical activities among the families. CONCLUSIONS Establishing an efficient collaboration between local and rehabilitation professionals with identifying potential future challenges, adjusting the interventions, clarifying roles and responsibilities, and providing supportive follow-up services may support sustainable community-based participation among immigrant families.
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Affiliation(s)
- Shahrzad Arfa
- Research Department, Beitostølen Healthsports Center, Beitostølen, Norway.,Faculty of Health Sciences, Oslo Metropolitan University, Oslo, Norway
| | - Per Koren Solvang
- Department of Physiotherapy, Oslo Metropolitan University, Oslo, Norway
| | - Berit Berg
- Department of Social Work, Norwegian University of Science and Technology, Trondheim, Norway
| | - Reidun Jahnsen
- Research Department, Beitostølen Healthsports Center, Beitostølen, Norway.,Department of Clinical Neurosciences for Children, Oslo University Hospital, Oslo, Norway.,Research Center for Habilitation and Rehabilitation Models and Services, CHARM, Institute of Health and Society, University of Oslo, Oslo, Norway
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Abu-Dahab SMN, Alheresh RA, Malkawi SH, Saleh M, Wong J. Participation patterns and determinants of participation of young children with cerebral palsy. Aust Occup Ther J 2020; 68:195-204. [PMID: 33300148 DOI: 10.1111/1440-1630.12714] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/23/2020] [Revised: 11/06/2020] [Accepted: 11/10/2020] [Indexed: 11/29/2022]
Abstract
INTRODUCTION Understanding participation patterns of young children with cerebral palsy (CP) will enable occupational therapists to tailor family- and child-centred services. This study compares participation patterns and participation barriers of young children with CP with those of typically developing (TD) children. In addition, effect of age and gender on participation were examined as well as child-related determinants of participation for young children with CP. METHODS Participants were a convenience sample of 110 young children with CP and 150 TD children, aged 36-72 months. Children with CP represented different levels of the Gross Motor Function Classification System-Expanded and Revised (GMFCS-E&R), the Manual Ability Classification System (MACS), and the Communication Function Classification System (CFCS). The Arabic Preschool Activity Card Sort was used to measure participation level as well as barriers of participation. T-tests, ANOVA, and exploratory regressions were employed. Significance was set at p < .05. RESULTS Young children with CP showed significant decreased overall and domain-specific participation compared to TD children (p < .001). Perceived barriers of participation were mostly related to child-factors for young children with CP compared to greater variability in barriers in TD children. Gender had no significant effect on participation regardless of diagnosis; however, pattern of the effect of age was different among the two groups. MACS was found to be the only significant predictor of participation for children with CP (p = .001). CONCLUSION Occupational therapists should focus on enhancing participation for young children with CP and consider participation barriers when designing their interventions. Several factors need to be considered when aiming to enhance participation of children with CP. The use of the MACS could contribute to better intervention planning.
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Affiliation(s)
- Sana M N Abu-Dahab
- Department of Occupational Therapy, School of Rehabilitation Sciences, The University of Jordan, Amman, Jordan
| | - Rawan A Alheresh
- Department of Occupational Therapy, School of Health and Rehabilitation Sciences, MGH Institute of Health Professions, Boston, MA, USA
| | - Somaya H Malkawi
- Department of Occupational Therapy, School of Rehabilitation Sciences, The University of Jordan, Amman, Jordan
| | - Maysoun Saleh
- Department of Physiotherapy, School of Rehabilitation Sciences, The University of Jordan, Amman, Jordan
| | - John Wong
- Department of Occupational Therapy, School of Health and Rehabilitation Sciences, MGH Institute of Health Professions, Boston, MA, USA
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Greenham M, Botchway E, Knight S, Bonyhady B, Tavender E, Scheinberg A, Anderson V, Muscara F. Predictors of participation and quality of life following major traumatic injuries in childhood: a systematic review. Disabil Rehabil 2020; 44:2591-2607. [PMID: 33232616 DOI: 10.1080/09638288.2020.1849425] [Citation(s) in RCA: 9] [Impact Index Per Article: 1.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/07/2023]
Abstract
OBJECTIVE Review the literature on predictors of participation and quality of life in children and young people who sustained a traumatic brain injury (TBI), spinal cord injury (SCI), and/or multi-trauma in a motor vehicle or other accident or trauma. DESIGN This systematic review was conducted and reported in line with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA). The protocol was registered on PROSPERO (registration number CRD42020131698). Electronic databases were searched for studies published between January 2000 and August 2020. Prospective and retrospective cohort studies were considered and risk of bias was assessed using the Quality In Prognosis Studies (QUIPS) tool. RESULTS The search yielded 5771 articles of which 30 studies met the inclusion criteria. Nineteen studies included patients with TBI and 11 with SCI. No studies of patients with multi-trauma met criteria. Evidence was found for associations with various factors (e.g., injury severity, level of education, mental health problems), although these findings are limited due to the quality of the studies (5 studies moderate and 25 high risk of bias). CONCLUSION Research on predictors of participation and quality of life following major traumatic injuries in childhood is lacking. More methodologically sound prospective, longitudinal studies are needed across different injury groups to further elucidate predictors of outcome.IMPLICATIONS FOR REHABILITATIONWhile long-term participation and quality of life is influenced by injury characteristics (i.e., injury severity), a number of potential modifiable factors can be targeted to improve outcomes following traumatic injuries in childhood.Young people should be provided with support to stay in school and pursue further education.Early intervention and prevention of mental health problems may improve long-term outcomes.Better management of ongoing medical problems and greater support for functional independence may improve participation.
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Affiliation(s)
- Mardee Greenham
- Murdoch Children's Research Institute, Parkville, VIC, Australia.,The Royal Children's Hospital, Parkville, VIC, Australia
| | - Edith Botchway
- Murdoch Children's Research Institute, Parkville, VIC, Australia.,The Royal Children's Hospital, Parkville, VIC, Australia.,Department of Paediatrics, The University of Melbourne, Parkville, VIC, Australia
| | - Sarah Knight
- Murdoch Children's Research Institute, Parkville, VIC, Australia.,The Royal Children's Hospital, Parkville, VIC, Australia.,Department of Paediatrics, The University of Melbourne, Parkville, VIC, Australia
| | - Bruce Bonyhady
- Melbourne Disability Institute, Parkville, VIC, Australia
| | - Emma Tavender
- Murdoch Children's Research Institute, Parkville, VIC, Australia.,Department of Paediatrics, The University of Melbourne, Parkville, VIC, Australia
| | - Adam Scheinberg
- Murdoch Children's Research Institute, Parkville, VIC, Australia.,The Royal Children's Hospital, Parkville, VIC, Australia.,Department of Paediatrics, The University of Melbourne, Parkville, VIC, Australia.,Department of Paediatrics, Monash University, Clayton, VIC, Australia
| | - Vicki Anderson
- Murdoch Children's Research Institute, Parkville, VIC, Australia.,The Royal Children's Hospital, Parkville, VIC, Australia.,Department of Paediatrics, The University of Melbourne, Parkville, VIC, Australia
| | - Frank Muscara
- Murdoch Children's Research Institute, Parkville, VIC, Australia.,The Royal Children's Hospital, Parkville, VIC, Australia.,Department of Paediatrics, The University of Melbourne, Parkville, VIC, Australia
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Mosoi AA, Beckmann J, Mirifar A, Martinent G, Balint L. Influence of Organized vs Non Organized Physical Activity on School Adaptation Behavior. Front Psychol 2020; 11:550952. [PMID: 33329181 PMCID: PMC7711162 DOI: 10.3389/fpsyg.2020.550952] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/30/2020] [Accepted: 10/21/2020] [Indexed: 11/13/2022] Open
Abstract
It is now well-established that physical activity has positive effects on both physical and mental health. However, the influence of organized physical activity (i.e., programs controlled and supervised by a trainer) on school adaptive behavior of adolescents with disabilities and/or behavioral disorders remains unclear. School behavior adaptation involves the ability to learn, conform to school norms and manage school activities without major behavior conflicts. A cross-sectional study was conducted to test the differences between organized physical activity and non-organized physical activity in an after school program. Eighty Romanian adolescents were recruited and allocated to three groups: (a) with disabilities [Ds; N = 17, M age = 14.55 years (SD = 1.16), 12 males and 5 females], (b) with conduct disorders [CDs, N = 21, M age = 14.52 years (SD = 1.11) 16 males and 5 females], and (c) participants who had not shown signs of conduct disorders or disabilities [as a control group; N = 42, M age = 14.2 years (SD = 0.46) 20 males and 22 females]. Personality traits, school behavior, and sensorimotor coordination were assessed by using the Eysenck personality questionnaire-junior scale, school in-adaptability questionnaire scale, and Vienna Test System Sport (SMK-sensorimotor coordination test) respectively. Multivariate analysis of variance MANOVA (3 × 3) and discriminant analysis were used to examine differences between the psychological and sensorimotor coordination outcomes across three groups and three types of physical activity context: (a) organized physical activity, (b) non-organized physical activity, and (c) no physical activity. The findings indicate that not participating in an organized physical activity program results in a reduced level of physical mobility and consequently is associated with maladaptive social and psychological outcomes. Thus, we argued that attending in an organized physical activity program is more beneficial for participants with disabilities and/or behavior disorders, due to an increase in the probability of school integration and development of their motor skills. Clearly more research is needed in order to investigate these effects in neurophysiological levels.
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Affiliation(s)
- Adrian A. Mosoi
- Department of Psychology, Education and Teacher Training, Faculty of Psychology and Education Sciences, Transilvania University of Braşov, Braşov, Romania
| | - Jürgen Beckmann
- Department of Sport and Health Sciences, Chair of Sport Psychology, Technical University of Munich, Munich, Germany
- Faculty of Health and Behavioural Sciences, School of Human Movement and Nutrition Sciences, University of Queensland, Brisbane, QLD, Australia
- Department of Physical Education and Sport Sciences (PESS), University of Limerick, Limerick, Ireland
| | - Arash Mirifar
- Department of Sport and Health Sciences, Chair of Sport Psychology, Technical University of Munich, Munich, Germany
| | - Guillaume Martinent
- Laboratory of Vulnerabilities and Innovation in Sport, University of Claude Bernard Lyon 1 – University of Lyon, Lyon, France
| | - Lorand Balint
- Department of Physical Education and Special Motricity, Faculty of Physical Education and Mountain Sports, Transilvania University of Braşov, Braşov, Romania
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Lindsay S, Kolne K. Understanding clinicians' strategies for providing gender-sensitive care: an exploration among pediatric rehabilitation health care providers. Disabil Rehabil 2020; 44:2437-2447. [PMID: 33096004 DOI: 10.1080/09638288.2020.1836270] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/12/2023]
Abstract
PURPOSE Although there is an increasing awareness of the critical role of gender within pediatric rehabilitation, little is known about the strategies that clinicians use to provide such care. The purpose of this study was to explore clinicians' strategies for providing gender-sensitive care within a pediatric rehabilitation hospital. METHODS We used a qualitative needs assessment design and a convenience sampling strategy to recruit clinicians from a pediatric rehabilitation hospital. We conducted interviews with 23 pediatric rehabilitation health care providers from various disciplines. We applied a thematic analysis to the interview transcripts. RESULTS Our analysis revealed the following themes regarding clinicians' strategies in providing gender-sensitive care: (1) awareness of gender biases and not making assumptions; (2) recognizing gender-based vulnerabilities; (3) respecting patient values, preferences and needs; and (4) advocacy. CONCLUSION Health care providers working within pediatric rehabilitation have several strategies for providing a gender-sensitive care approach to clients.IMPLICATIONS FOR REHABILITATIONClinicians should seek training (i.e., appropriate terminology, creating inclusive spaces) in how to recognize gender-based health vulnerabilities, especially among patients who identify as non-binary or transgender.Clinicians should make an effort to try to be aware of their own biases and not make gender-based assumptions.Advocacy, respecting patient values, preferences and needs are important aspects of providing gender-sensitive care.
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Affiliation(s)
- Sally Lindsay
- Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital & Department of Occupational Science & Occupational Therapy, University of Toronto, Toronto, Canada
| | - Kendall Kolne
- Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital & Department of Occupational Science & Occupational Therapy, University of Toronto, Toronto, Canada
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Dalen LK, Nyquist A, Shields L, Stanley D, Nyquist TE, Jahnsen R, Ullenhag A. ActiveYou I – a new web-based measure of activity preferences among children with disabilities. Scand J Occup Ther 2020; 28:598-608. [DOI: 10.1080/11038128.2020.1822442] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/23/2022]
Affiliation(s)
- Lars Kristian Dalen
- Beitostolen Healthsports Center, Beitostolen, Norway
- School of Nursing, Midwifery & Indigenous Health, Charles Sturt University, Bathurst, Australia
| | | | - Linda Shields
- School of Nursing, Midwifery & Indigenous Health, Charles Sturt University, Bathurst, Australia
| | - David Stanley
- Australian Catholic University, Melbourne, Australia
| | | | | | - Anna Ullenhag
- Beitostolen Healthsports Center, Beitostolen, Norway
- Mälardalens University, Vesteräs, Sweden
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The Participation of Children with Intellectual Disabilities: Including the Voices of Children and Their Caregivers in India and South Africa. INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH 2020; 17:ijerph17186706. [PMID: 32942575 PMCID: PMC7557845 DOI: 10.3390/ijerph17186706] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Subscribe] [Scholar Register] [Received: 08/14/2020] [Revised: 09/09/2020] [Accepted: 09/10/2020] [Indexed: 12/01/2022]
Abstract
There is a shortage of research on the participation of children with intellectual disabilities from middle-income countries. Also, most child assessments measure either the child’s or the caregiver’s perceptions of participation. Participation, however, is an amalgamation of both perspectives, as caregivers play a significant role in both accessing and facilitating opportunities for children’s participation. This paper reports on both perceptions—those of children with intellectual disabilities and those of their caregiver, in India and South Africa. A quantitative group comparison was conducted using the Children’s Assessment of Participation and Enjoyment (CAPE) that was translated into Bengali and four South African languages. One hundred child–caregiver dyads from India and 123 pairs from South Africa participated in the study. The results revealed interesting similarities and differences in participation patterns, both between countries and between children and their caregivers. Differences between countries were mostly related to the intensity of participation, with whom, and where participation occurred. Caregiver and child reports differed significantly regarding participation and the enjoyment of activities. This study emphasises the need for consideration of cultural differences when examining participation and suggests that a combined caregiver-and-child-reported approach may provide the broadest perspective on children’s participation.
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Dada S, Bastable K, Halder S. The Role of Social Support in Participation Perspectives of Caregivers of Children with Intellectual Disabilities in India and South Africa. INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH 2020; 17:E6644. [PMID: 32933056 PMCID: PMC7558089 DOI: 10.3390/ijerph17186644] [Citation(s) in RCA: 9] [Impact Index Per Article: 1.8] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Subscribe] [Scholar Register] [Received: 08/15/2020] [Revised: 09/02/2020] [Accepted: 09/03/2020] [Indexed: 12/21/2022]
Abstract
Caregivers are an intrinsic component of the environment of children with intellectual disabilities. However, caregivers' capacity to support children's participation may be linked to the social support that they, as caregivers, receive. Social support may increase participation, educational, psychological, medical and financial opportunities. However, there is a lack of information on social support in middle-income countries. The current study described and compared the social support of caregivers of children with intellectual disabilities by using the Family Support Survey (FSS) in India and South Africa. The different types of social support were subsequently considered in relation to participation, using the Children's Assessment of Participation and Enjoyment (CAPE). One hundred caregiver-child dyads from India and 123 from South Africa participated in this study. The data were analysed using non-parametric measures. Indian caregivers reported greater availability of more helpful support than did the South African caregivers. Social support was associated with children's participation diversity (India) and intensity (South Africa). The child-/caregiver-reported participation data showed different associations with participation. Results from this study suggest that perceived social support of caregivers differs between countries and is associated with their child's participation. These factors need to be considered when generalising results from different countries.
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Affiliation(s)
- Shakila Dada
- Centre for Augmentative and Alternative Communication, Humanities Faculty, University of Pretoria, Pretoria 0002, South Africa;
| | - Kirsty Bastable
- Centre for Augmentative and Alternative Communication, Humanities Faculty, University of Pretoria, Pretoria 0002, South Africa;
| | - Santoshi Halder
- Department of Education, University of Calcutta, Alipore Campus, 1 Reformatory St., Kolkata 700027, India;
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Lindsay S, Kolne K, Rezai M. Challenges with providing gender-sensitive care: exploring experiences within pediatric rehabilitation hospital. Disabil Rehabil 2020; 44:892-900. [DOI: 10.1080/09638288.2020.1781939] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/24/2022]
Affiliation(s)
- Sally Lindsay
- Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, Canada
- Department of Occupational Science & Occupational Therapy, University of Toronto, Toronto, Canada
| | - Kendall Kolne
- Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, Canada
| | - Mana Rezai
- Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, Canada
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Coussens M, Van Driessen E, De Baets S, Van Regenmortel J, Desoete A, Oostra A, Vanderstraeten G, Waelvelde HV, Van de Velde D. Parents' perspectives on participation of young children with attention deficit hyperactivity disorder, developmental coordination disorder, and/ or autism spectrum disorder: A systematic scoping review. Child Care Health Dev 2020; 46:232-243. [PMID: 31867727 DOI: 10.1111/cch.12735] [Citation(s) in RCA: 9] [Impact Index Per Article: 1.8] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/21/2018] [Revised: 12/12/2019] [Accepted: 12/14/2019] [Indexed: 01/26/2023]
Abstract
BACKGROUND During the early years of a child's life, participation is essential for learning and development. Children with disabilities are at risk for decreased participation. The interplay between environment and participation is identified as one of the most important factors influencing successful participation. The objective of this scoping review was to synthesize peer-reviewed literature about barriers and facilitators of participation according to the perspective of parents of children younger than 6 years with Attention Deficit Hyperactivity Disorder (ADHD), Autism Spectrum Disorder (ASD), and/ or Developmental Coordination Disorder (DCD). METHODS The scoping review followed Arksey and O'Malley's framework. Relevant studies were identified by a comprehensive search of scientific databases (PubMed and Web of Science). Studies describing perspectives of parents regarding their child's participation, written in English, and published between 2001 and September 2017 were included. RESULTS A total of 854 articles were retrieved, with 13 meeting the criteria. Elements contributing to perceived barriers and facilitators were identified and organized according to the International Classification of Functioning, Child-Youth framework. Concepts contained in these studies were linked to "activities and participation" (general tasks and demands, such as bedtime and dinner routines, and social, civic life, such as play and leisure). Environment-focused factors identified were situated on "support and relationships, " "attitudes, " and "services, systems, and policies." CONCLUSION The review revealed guidelines focusing on family-centred care, communication with, and providing information to parents with young children with developmental disabilities (ADHD, DCD, and/ or ASD).
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Affiliation(s)
- Marieke Coussens
- Department of Rehabilitation Sciences, Occupational Therapy Program, University of Ghent, Ghent, Belgium
| | - Evy Van Driessen
- Department of Rehabilitation Sciences, Occupational Therapy Program, University of Ghent, Ghent, Belgium
| | - Stijn De Baets
- Department of Rehabilitation Sciences, Occupational Therapy Program, University of Ghent, Ghent, Belgium
| | - Jasmine Van Regenmortel
- Department of Rehabilitation Sciences, Occupational Therapy Program, University of Ghent, Ghent, Belgium
| | - Annemie Desoete
- Department of Experimental Clinical and Health Psychology, University of Ghent, Ghent, Belgium
| | - Ann Oostra
- Department of Paediatrics and Medical Genetics, University of Ghent, Ghent, Belgium
| | - Guy Vanderstraeten
- Department of Rehabilitation Sciences, Occupational Therapy Program, University of Ghent, Ghent, Belgium
| | - Hilde Van Waelvelde
- Department of Rehabilitation Sciences, Occupational Therapy Program, University of Ghent, Ghent, Belgium
| | - Dominique Van de Velde
- Department of Rehabilitation Sciences, Occupational Therapy Program, University of Ghent, Ghent, Belgium
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Chien CW, Leung C, Schoeb V, Au A. A Chinese version of the young children's participation and environment measure: psychometric evaluation in a Hong Kong sample. Disabil Rehabil 2020; 43:3061-3069. [PMID: 32096426 DOI: 10.1080/09638288.2020.1727032] [Citation(s) in RCA: 12] [Impact Index Per Article: 2.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/16/2022]
Abstract
PURPOSE To investigate the psychometric properties of a Chinese-translated version of the Young Children's Participation and Environment Measure. MATERIALS AND METHODS The Young Children's Participation and Environment Measure was translated into Chinese using cultural adaptation by adding/replacing with activities relevant to Chinese culture. Parents of 53 children aged 2-5 years with developmental disabilities and of 50 typical developing children completed the questionnaires. Internal consistency, test-retest reliability, known-group validity, and discriminant validity were examined using Cronbach's alpha, intraclass correlation coefficient, Mann-Whitney U tests, and Spearman's rank correlation coefficients respectively. RESULTS Internal consistency was acceptable for most scales (α = 0.42-0.89). Test-retest reliability of the summary scores was moderate to high for all scales (intraclass correlation coefficient = 0.65-0.90). Known-group validity was supported by demonstrating significant differences by disability status in all community participation scales, two daycare/preschool participation scales, and one home participation scale. Low or negative correlations between the scores of some scales and children's cognition (ρ = 0.27-0.32; -0.36-to-0.35) and parental stress (ρ = -0.42-to-0.31) supported discriminant validity. CONCLUSION This study provided psychometric evidence supporting the use of the Young Children's Participation and Environment Measure to assess Chinese children's participation and environmental support.IMPLICATIONS FOR REHABILITATIONThe Young Children's Participation and Environment Measure is translated into Chinese using a cultural adaptation process.The Chinese version of the Young Children's Participation and Environment Measure demonstrates evidence for internal consistency, test-retest reliability (including the minimal detectable change).The Chinese version of the Young Children's Participation and Environment Measure demonstrates evidence for known-group validity and discriminant validity.The Chinese version of the Young Children's Participation and Environment Measure holds promise for use in children aged 2-5 years to assess their participation and identify environmental barriers warranting intervention.
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Affiliation(s)
- Chi-Wen Chien
- Department of Rehabilitation Sciences, The Hong Kong Polytechnic University, Hong Kong (SAR), China
| | - Cynthia Leung
- Department of Applied Social Sciences, The Hong Kong Polytechnic University, Hong Kong (SAR), China
| | - Veronika Schoeb
- School of Health Sciences (HESAV), University of Applied Sciences and Arts Western Switzerland (HES-SO), Delémont, Switzerland
| | - Alma Au
- Department of Applied Social Sciences, The Hong Kong Polytechnic University, Hong Kong (SAR), China
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Chan-Viquez D, Hasanbarani F, Zhang L, Anaby D, Turpin NA, Lamontagne A, Feldman AG, Levin MF. Development of vertical and forward jumping skills in typically developing children in the context of referent control of motor actions. Dev Psychobiol 2020; 62:711-722. [PMID: 31957019 DOI: 10.1002/dev.21949] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/13/2019] [Revised: 12/14/2019] [Accepted: 12/23/2019] [Indexed: 12/20/2022]
Abstract
The empirically based referent control theory of motor actions provides a new framework for understanding locomotor maturation. Mature movement patterns of referent control are characterized by periods of minimization of activity across multiple muscles (global electromyographic [EMG] minima) resulting from transient matching between actual and referent body configurations. We identified whether locomotor maturation in young children was associated with (a) development of referent control and (b) children's frequency of participation in everyday activities evaluated by parents. Kinematics and EMG activity were recorded from typically developing children (n = 15, 3-5 years) and young adults (n = 10, 18-25 years) while walking, vertical or forward jumping. Presence and location of global EMG minima in movement cycles, slopes of ankle vertical/sagittal displacements, and shoulder displacement ratios were evaluated. Children had fewer global EMG minima compared to adults during specific phases of vertical and forward jumps. Ankle displacement profiles for walking and jumping forward were related to each other in adults, whereas those for walking and vertical jumping were related in children. Higher frequency of participation was significantly correlated with more mature jumping patterns in children. A decrease in the number of global EMG minima and changes in ankle movement patterns could be indicators of locomotor immaturity in typically developing children.
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Affiliation(s)
- Daniela Chan-Viquez
- School of Physical and Occupational Therapy, McGill University, Montreal, QC, Canada.,Center for Interdisciplinary Research in Rehabilitation of Greater Montreal (CRIR), Montreal, QC, Canada
| | - Fariba Hasanbarani
- School of Physical and Occupational Therapy, McGill University, Montreal, QC, Canada.,Center for Interdisciplinary Research in Rehabilitation of Greater Montreal (CRIR), Montreal, QC, Canada
| | - Lei Zhang
- Center for Interdisciplinary Research in Rehabilitation of Greater Montreal (CRIR), Montreal, QC, Canada.,Department of Neuroscience, University of Montreal, Montreal, QC, Canada
| | - Dana Anaby
- School of Physical and Occupational Therapy, McGill University, Montreal, QC, Canada.,Center for Interdisciplinary Research in Rehabilitation of Greater Montreal (CRIR), Montreal, QC, Canada
| | - Nicolas A Turpin
- Center for Interdisciplinary Research in Rehabilitation of Greater Montreal (CRIR), Montreal, QC, Canada.,Department of Neuroscience, University of Montreal, Montreal, QC, Canada
| | - Anouk Lamontagne
- School of Physical and Occupational Therapy, McGill University, Montreal, QC, Canada.,Center for Interdisciplinary Research in Rehabilitation of Greater Montreal (CRIR), Montreal, QC, Canada
| | - Anatol G Feldman
- Center for Interdisciplinary Research in Rehabilitation of Greater Montreal (CRIR), Montreal, QC, Canada.,Department of Neuroscience, University of Montreal, Montreal, QC, Canada
| | - Mindy F Levin
- School of Physical and Occupational Therapy, McGill University, Montreal, QC, Canada.,Center for Interdisciplinary Research in Rehabilitation of Greater Montreal (CRIR), Montreal, QC, Canada
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Powrie B, Copley J, Turpin M, Ziviani J, Kolehmainen N. The meaning of leisure to children and young people with significant physical disabilities: Implications for optimising participation. Br J Occup Ther 2019. [DOI: 10.1177/0308022619879077] [Citation(s) in RCA: 6] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/03/2023]
Abstract
Introduction The facilitation of meaningful leisure participation for children and young people requires an understanding of what leisure means to them. This study aimed to understand meaningful leisure from the perspective of children and young people with complex physical and communication disabilities. Method A hermeneutic phenomenological research design was used. Data was gathered through multiple interviews with six young people supported by photo elicitation, Talking Mats and direct observation. Individual case studies were analysed, together with six autobiographies of people with similar disabilities. Data analysis was iterative and multi-directional, alternating between segments and the whole throughout interpretation. Results Leisure experience meanings were uniquely constructed for each person, based on preferences, personality and circumstances. The tree of leisure emerged as a useful metaphor for three essential features (control, engrossing, enjoyment) and four key meanings (escape, exploration, exchange and expression) of leisure. Children and young people experienced five meaningful outcomes that lasted beyond the leisure activity (restoration, protection, construction, reflection and connection). Conclusion For children and young people with disabilities, a balanced array of diverse leisure experiences provides a powerful and accessible route to wellbeing. Implications for practice include understanding the individual, focusing on the social environment, supporting self-advocacy and promoting opportunities for free movement.
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Affiliation(s)
- Benita Powrie
- Leeds Community Healthcare NHS Trust, Leeds, UK
- School of Health and Rehabilitation Sciences, University of Queensland, Brisbane, Australia
| | - Jodie Copley
- School of Health and Rehabilitation Sciences, University of Queensland, Brisbane, Australia
| | - Merrill Turpin
- School of Health and Rehabilitation Sciences, University of Queensland, Brisbane, Australia
| | - Jenny Ziviani
- School of Health and Rehabilitation Sciences, University of Queensland, Brisbane, Australia
| | - Niina Kolehmainen
- Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK
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40
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Wang PJ, Liao HF, Kang LJ, Chen LC, Hwang AW, Lu L, Tu YK, Morgan GA. Child and family factors that predict participation attendance in daily activities of toddlers with global developmental delay. Disabil Rehabil 2019; 43:1849-1860. [PMID: 31647340 DOI: 10.1080/09638288.2019.1678685] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/25/2022]
Abstract
PURPOSES Enhancing children's daily participation is the optimal goal of early childhood intervention. This study aimed to identify child and family predictors of participation for toddlers with global developmental delay. METHODS Fifty-nine toddlers with global developmental delay (aged 24-43 months) and their mothers participated in a 6-month longitudinal study. Predictors for participation were child factors [age, gender, delay severity, mastery motivation (perceived persistence and task persistence), and withdrawal behavior], and family factors (socioeconomic status, family income, maternal education, stress, and maternal teaching behavior). Dependent variables were participation diversity and intensity of four activity types measured 6-month later using the Assessment of Preschool Children's Participation (Chinese version). Correlation and hierarchical regression statistical methods were used. RESULTS Older children with higher persistence had higher overall participation. Different factors predicted different participation dimensions and different activity types. Older age, higher perceived persistence, and being less withdrawn predicted higher diversity and intensity for play participation. For skill development participation, older age, less severity, higher mastery motivation, and better maternal teaching behaviors predicted higher diversity; and age, mastery motivation and maternal teaching predicted intensity. CONCLUSIONS Different factors predict participation attendance differently. Supporting parents to enhance toddlers' mastery motivation may optimize children's participation in daily activities.Implications for rehabilitationBased on the child and their caregiver preferences, applicability and/or engagement for different activity types, interventionists could collaborate further with caregivers to find strategies to increase children's participation attendance in daily life.Interventionists could consult with caregivers: (a) to observe the persistence and positive affect (mastery motivation) of children during different activities, (b) to figure out the possible barriers to participation in those activities, and (c) to demonstrate appropriate caregiver-child interactions.Interventionists are encouraged to support children's mastery motivation and quality of maternal teaching behaviors to enhance participation in daily activities.
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Affiliation(s)
- Pei-Jung Wang
- Department of Physical Therapy, College of Medical and Health Science, Asia University, Taichung, Taiwan
| | - Hua-Fang Liao
- School and Graduate Institute of Physical Therapy, National Taiwan University, Taipei, Taiwan.,Taiwan Society of ICF, Taipei, Taiwan
| | - Ling-Ju Kang
- Graduate Institute of Early Intervention, College of Medicine, Chang Gung University, Tao-Yuan, Taiwan.,Physical Medicine and Rehabilitation, Chang Gung Memorial Hospital, Tao-Yuan, Taiwan
| | - Li-Chiou Chen
- Department of Physical Therapy, Fooyin University, Kaohsiung, Taiwan
| | - Ai-Wen Hwang
- Graduate Institute of Early Intervention, College of Medicine, Chang Gung University, Tao-Yuan, Taiwan.,Physical Medicine and Rehabilitation, Chang Gung Memorial Hospital, Tao-Yuan, Taiwan
| | - Lu Lu
- Department of Physical Medicine and Rehabilitation, National Taiwan University Hospital, Taipei, Taiwan
| | - Yu-Kang Tu
- Institute of Epidemiology and Preventive Medicine, College of Public Health, National Taiwan University, Taipei, Taiwan
| | - George A Morgan
- Education and Human Development, Colorado State University, Fort Collins, CO, USA
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Fletcher T, Anderson-Seidens J, Wagner H, Linyard M, Nicolette E. Caregivers' perceptions of barriers and supports for children with sensory processing disorders. Aust Occup Ther J 2019; 66:617-626. [PMID: 31304986 DOI: 10.1111/1440-1630.12601] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 06/16/2019] [Indexed: 11/30/2022]
Abstract
INTRODUCTION This study explored caregivers' perceptions of how children with sensory processing disorders participate in community outings, strategies to support successful outings and if multi-sensory environments mitigate participation barriers. METHODS Seven mothers and two grandmothers of children with sensory challenges participated in focus groups. Following focus groups, participants took part in a workshop on sensory processing disorders and behaviour management strategies and experienced a multi-sensory environment. To ensure trustworthiness, researchers individually coded data, corroborated to develop categories, then recoded until reaching consensus. Three participants reviewed conclusions that the researchers derived from audit trails and focus groups to verify credibility. RESULTS When asked about their child's participation challenges, participants identified sensory processing difficulties, environmental triggers, specific locations visited and how caregivers managed participation challenges. Participants relied on preparation, planning and consistency. Participants had varying exposure to multi-sensory environments and some were uncertain how they supported participation. CONCLUSION Participants reported positive outcomes resulting from proactive planning to manage behaviour, anticipating environmental triggers and challenges posed by locations they visited, and that their child's challenges and their own abilities to meet them evolved over time. They speculated multi-sensory environments could support participation when they were well-designed.
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Affiliation(s)
| | | | - Hope Wagner
- Children's Health Specialty Center in Grapevine, Texas, USA
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Arakelyan S, Maciver D, Rush R, O'hare A, Forsyth K. Family factors associated with participation of children with disabilities: a systematic review. Dev Med Child Neurol 2019; 61:514-522. [PMID: 30613957 PMCID: PMC6850164 DOI: 10.1111/dmcn.14133] [Citation(s) in RCA: 53] [Impact Index Per Article: 8.8] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Accepted: 10/26/2018] [Indexed: 12/02/2022]
Abstract
AIM The aim of this review was to synthesize empirical evidence of family factors associated with participation of children with disabilities aged 5 to 12 years to inform the development of family-centred participation-fostering interventions. METHOD A systematic search was performed for articles published in English between 2001 and 2017 in MEDLINE, PsycINFO, CINAHL, Scopus, and ASSIA following the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines. Quality of evidence was appraised using the Research Triangle Institute Item Bank. Family factors associated with participation were identified and assessed using a multistage 'semi-quantitative' approach. RESULTS Thirty studies were included in the review. Four non-modifiable 'status' factors consistently associated with participation were parental ethnicity, parental education, family type, and family socio-economic status. Six modifiable 'process' factors with consistent associations with participation were parental mental and physical health functioning, parental self-efficacy beliefs, parental support, parental time, family preferences, and activity orientation. INTERPRETATION Rehabilitation professionals should direct their focus towards modifiable family factors as primary targets for family-centred interventions. Strategies that can improve families' access to information, counselling, and community support services are likely to support children's participation by empowering families and optimizing their health and well-being. WHAT THIS PAPER ADDS Non-modifiable 'status' and modifiable 'process' factors are important in participation of children with disabilities. Disadvantaged family circumstances shaped by status factors are associated with reduced participation. Key process factors for intervention are parental mental and physical health and parental self-efficacy beliefs. Other important process factors for intervention are parental support and time, family preferences, and activity orientation.
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Affiliation(s)
| | - Donald Maciver
- School of Health SciencesQueen Margaret UniversityEdinburghUK
| | - Robert Rush
- School of Health SciencesQueen Margaret UniversityEdinburghUK
| | - Anne O'hare
- Centre for Clinical Brain SciencesThe University of EdinburghEdinburghUK
| | - Kirsty Forsyth
- School of Health SciencesQueen Margaret UniversityEdinburghUK
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43
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Nyquist A, Jahnsen RB, Moser T, Ullenhag A. The coolest I know – a qualitative study exploring the participation experiences of children with disabilities in an adapted physical activities program. Disabil Rehabil 2019; 42:2501-2509. [DOI: 10.1080/09638288.2019.1573937] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 02/08/2023]
Affiliation(s)
- Astrid Nyquist
- Beitostølen Healthsports Center, Beitostølen, Oppland, Norway
| | - Reidun Birgitta Jahnsen
- Beitostølen Healthsports Center, Beitostølen, Oppland, Norway
- Department of Clinical Neurosciences for Children, Oslo University Hospital, Oslo, Norway
- Research Center for Habilitation and Rehabilitation Models and Services, University of Oslo, Institute of Health and Society, CHARM, Oslo, Norway
| | - Thomas Moser
- Department of Educational Science, University of South-Eastern Norway, Tønsberg, Norway
| | - Anna Ullenhag
- Beitostølen Healthsports Center, Beitostølen, Oppland, Norway
- Department of Physiotherapy, School of Health Care and Social Welfare, Mälardalens University, Västerås, Sweden
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44
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"My Child May Be Ready, but I Am Not": Parents' Experiences of Their Children's Transition to Inclusive Fitness Settings. Adapt Phys Activ Q 2019; 36:282-301. [PMID: 30795688 DOI: 10.1123/apaq.2018-0101] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/18/2022] Open
Abstract
Parents play an essential role in the transition from separate physical activity programs to inclusive settings for their children. The purpose of this study was to explore experiences of parents as they anticipate and prepare for their children experiencing disability to transition, understand strategies used to address transition, and gain insights into the supports important to families during transition. Using an interpretative phenomenological analysis research approach, semistructured one-on-one interviews were conducted with 8 parents whose children were undergoing the transition from separate to inclusive community fitness contexts. Four themes described the experiences of parents as they anticipated, prepared for, and supported their child to transition: My child may be ready, but I am not; fear of outside judgment; playing by their rules; and reframing our thinking. Using Schlossberg's model, the tensions parents faced as they negotiated new roles, relationships, routines, and assumptions as they moved through the transition process were uncovered. The parents experienced transition alongside their children, providing insights for fitness and health-promotion professionals. Without preparation for transition, apprehensions and hesitancy may postpone or prevent their children's transition to community programs.
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45
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Van keer I, Van Leeuwen K, Maes B. Exploring family activities and child engagement: A study on children with a significant cognitive and motor developmental delay. JOURNAL OF APPLIED RESEARCH IN INTELLECTUAL DISABILITIES 2019; 32:779-791. [DOI: 10.1111/jar.12568] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/30/2018] [Revised: 10/17/2018] [Accepted: 01/06/2019] [Indexed: 12/01/2022]
Affiliation(s)
- Ines Van keer
- Research Unit Parenting and Special Education Faculty of Psychology and Educational Sciences Catholic University of Leuven Leuven Belgium
| | - Karla Van Leeuwen
- Research Unit Parenting and Special Education Faculty of Psychology and Educational Sciences Catholic University of Leuven Leuven Belgium
| | - Bea Maes
- Research Unit Parenting and Special Education Faculty of Psychology and Educational Sciences Catholic University of Leuven Leuven Belgium
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46
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Miró J, Sánchez-Rodríguez E, Brijaldo S, Jensen MP. The Silhouettes Fatigue Scale: comprehensibility and validity in older individuals. Disabil Rehabil 2019; 42:1906-1911. [PMID: 30672341 DOI: 10.1080/09638288.2018.1539129] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/27/2022]
Abstract
Purpose: Fatigue has been shown to be one of the key factors that interfere in the quality of life of elderly individuals. In order to understand its impact and evaluate the efficacy of treatments that target fatigue, researchers and clinicians need psychometrically sound and easy to use assessment instruments. The aim of this work was to address this need by evaluating the comprehensibility and validity of the Silhouettes Fatigue Scale (SFS) in a sample of older individuals.Methods: A total of 70 older individuals participated in the study. Participants were interviewed individually and asked to rate their level of fatigue during the week before the interview using the SFS and the FACIT-Fatigue Scale (to help evaluate convergent validity), and respond to the Pain Catastrophizing Scale (to help evaluate discriminant validity).Results: The results indicate that the SFS is understandable and that the scores have an adequate convergent validity and discriminant validity when used with older adults.Conclusions: The SFS is a valid measure of fatigue that can be used with older adults. It fills the need for a brief and easy to administer and score measure, which can be used in situations where assessment burden is a significant issue.Implications for rehabilitationFatigue is a significant problem among the elderly resulting in significant disability, and psychometrically sound and easy to use questionnaires are needed.The Silhouettes Fatigue Scale (SFS) is a new single-item self-report fatigue rating scale.Results show that the SFS is understandable, and that the scores have discriminant and convergent validity when used with older adults.As it does not use written items, it may be more easily understood by people who have basic or even no literacy level, thus making it easier to use for a wider audience.
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Affiliation(s)
- Jordi Miró
- Department of Psychology, Unit for the Study and Treatment of Pain - ALGOS, Research Center for Behavior Assessment, Universitat Rovira i Virgili, Tarragona, Spain
| | - Elisabet Sánchez-Rodríguez
- Department of Psychology, Unit for the Study and Treatment of Pain - ALGOS, Research Center for Behavior Assessment, Universitat Rovira i Virgili, Tarragona, Spain
| | - Solángel Brijaldo
- Department of Psychology, Unit for the Study and Treatment of Pain - ALGOS, Research Center for Behavior Assessment, Universitat Rovira i Virgili, Tarragona, Spain
| | - Mark P Jensen
- Department of Rehabilitation Medicine, University of Washington, Seattle, WA, USA
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Bowman S, Evans C. It's Not Just Me. Parents' Perceptions of a Multi-Disciplinary Therapy Group for Infants with Disabilities. Phys Occup Ther Pediatr 2019; 39:502-513. [PMID: 30880538 DOI: 10.1080/01942638.2019.1577785] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 10/27/2022]
Abstract
Aim: To explore parent perceptions of Baby Club, a therapeutic program involving physiotherapy, occupational therapy, and speech and language therapy for infants with physical disabilities under 2 years and to better understand how the group addresses child and family needs. Methods: A qualitative descriptive design using semi-structured interviews and a brief demographics questionnaire. Eight parents who attended a Baby Club program between 2017 and 2018 were recruited from ErinoakKids Centre for Treatment and Development. Interviews were audio-recorded, transcribed, and de-identified. A content analysis approach was used with an inductive process to generate a coding scheme. Investigators developed overarching themes. Results: Three themes representing parents' perceptions of Baby Club were identified: (1) Learning Together through Play and Fun; (2) I'm Not the Only One - Sharing and Support; (3) The Value of Therapist Time and Expertise. Conclusions: Baby Club provides parents and infants with opportunities to learn new skills through play, providing enriching social experiences and networking in a supportive therapeutic group environment.
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Affiliation(s)
- Susan Bowman
- a Department of Physical Therapy, University of Toronto , Toronto , Ontario , Canada.,b ErinoakKids Centre for Treatment & Development , Mississauga , Ontario , Canada
| | - Catherine Evans
- a Department of Physical Therapy, University of Toronto , Toronto , Ontario , Canada
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48
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Heräjärvi N, Leskinen M, Pirttimaa R, Jokinen K. Subjective quality of life among youth with severe physical disabilities during the transition to adulthood in Finland. Disabil Rehabil 2018; 42:918-926. [DOI: 10.1080/09638288.2018.1511756] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.1] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/28/2022]
Affiliation(s)
- Nina Heräjärvi
- Department of Education, Special Education, University of Jyväskylä, Jyväskylä, Finland
| | - Markku Leskinen
- Department of Education, Special Education, University of Jyväskylä, Jyväskylä, Finland
| | - Raija Pirttimaa
- Department of Education, Special Education, University of Jyväskylä, Jyväskylä, Finland
| | - Kimmo Jokinen
- Department of Social Sciences and Philosophy, Family Research Centre, University of Jyväskylä, Jyväskylä, Finland
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49
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van Vulpen LF, de Groot S, Rameckers EA, Becher JG, Dallmeijer AJ. Improved parent-reported mobility and achievement of individual goals on activity and participation level after functional power-training in young children with cerebral palsy: a double-baseline controlled trial. Eur J Phys Rehabil Med 2018. [DOI: 10.23736/s1973-9087.18.04921-3] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/31/2022]
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50
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Everyday Activities for Children with Mitochondrial Disorder: A Retrospective Chart Review. Occup Ther Int 2018; 2018:5716947. [PMID: 29977174 PMCID: PMC6011071 DOI: 10.1155/2018/5716947] [Citation(s) in RCA: 6] [Impact Index Per Article: 0.9] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/28/2017] [Accepted: 05/22/2018] [Indexed: 01/14/2023] Open
Abstract
Background Engagement in everyday activities is important for the health and wellbeing of children. Children with mitochondrial disorders have impaired energy production leading to limitations in activity. It is unknown which activities these children perform and if the nature of activities of low-functioning children differs from average-functioning children. Therefore, this pilot study explored the activities reported in patient records of a heterogeneous group of children with genetically confirmed mitochondrial disorders. Methods A retrospective qualitative directed content analysis by health care professionals reported activities (as part of their professional reasoning obligations) in hospital patient records of children with mitochondrial disorder. Results Seventeen patient records, presenting notes on capacities and performed activities, showed an overview of everyday activities that covered the categories: self-care, house chores, therapy, school, computing, hobby, play, sports, and mobility/transport. The activity categories of low-functioning children did not differ from average-functioning children, although descriptions of specific activities differed between groups. Conclusion This pilot exploration indicates that the types of activities that children with mitochondrial disorders perform are not necessarily linked to the child's impairments. However, differences in levels of independence, assistive device usage, and energy costs seem to exist. Future research should address the child's perspective on, and meaning of, activity performances.
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