Participation profiles in domestic life and peer relations as experienced by adolescents with and without impairments and long-term health conditions

Purpose: To investigate how individual and environmental factors relate to self-reported participation profiles in adolescents with and without impairments or long-term health conditions. Methods: A person-oriented approach (hierarchical cluster analysis) was used to identify cluster groups of individuals sharing participation patterns in the outcome variables frequency perceived importance in domestic life and peer relations. Cluster groups were compared using one-way analysis of variance (ANOVA). Results: A nine-cluster solution was chosen. All clusters included adolescents with impairment and long-term health conditions. Perceived importance of peer relations was more important than frequent attendance in domestic-life activities. Frequency of participation in dialogues and family interaction patterns seemed to affect the participation profiles more than factors related to body functions. Conclusion: Type of impairment or long-term health condition is a weaker determinant of membership in clusters depicting frequency and perceived importance in domestic life or peer relations than dialogue and family environment.     

Identifying relevant areas of functioning in children and youth with Cerebral Palsy using the ICF-CY coding system: From whose perspective?

AimsA standardized methodology endorsed by the World Health Organization was used to select the most relevant International Classification of Functioning, Disability and Health for children and youth (ICF-CY) categories to inform the development of the ICF Core Sets for CY with Cerebral Palsy (CP). The aim of this study was to appraise comparatively the results of the four studies included in the preparatory phase of the project exploring relevant areas of functioning in CY with CP.MethodsICF-CY categories identified in the preparatory studies – systematic review, global expert survey, qualitative study, and clinical study – were ranked. We compared the ranking percentile scores of the categories across studies.ResultsEach study emphasized different ICF-CY components and provided unique categories. Professionals from the health, education and social sectors described areas of functioning that were well distributed across the ICF-CY components (global expert survey), CY with CP and caregivers highlighted areas within the components activity and participation (a & p) and environmental factors (qualitative study), while the research community and clinical encounters mainly focused on body functions and a & p (systematic review and clinical study).InterpretationThis study highlights the need to consider all relevant perspectives when describing the functional profile of CY with CP.     

基于ICF-CY脑性瘫痪“3+1”全人康复模式临床应用

目的:探讨ICF-CY框架下脑瘫“3+1”全人康复模式临床应用效果。方法:选取2020年3月至2021年1月治疗的44例脑瘫患儿,按就诊先后顺序分为对照组和观察组各22例。对照组给予常规康复康复干预方法,观察组依据ICF-CY评定结果,从身体功能、活动和参与、环境因素三方面制定个体化的“3+1”全人康复治疗。两组均连续干预10周,应用脑瘫ICF-CY核心分类组合简明通用版评价康复效果。结果:治疗后对照组和观察组身体功能ICF限定值与治疗前比较均有降低(P<0.05),观察组活动和参与ICF限定值与治疗前比较亦有降低(P<0.05);两项ICF限定值观察组均优于对照组(P<0.05);观察组和对照组阻碍因素与活动和参与ICF限定值呈正相关关系(P<0.05)。结论:ICF-CY架构下的脑瘫“3+1”全人康复模式能显著改善患儿的身体功能、活动和参与能力,环境因素是影响康复疗效的主要因素之一。     

Applying the ICF framework to study changes in quality-of-life for youth with chronic conditions

Objective: The objective of this paper is to describe how the ICF framework was applied as the foundation for a longitudinal study of changes in quality-of-life (QoL) for youth with chronic conditions.

Method: This article will describe the study's aims, methods, measures and data analysis techniques. It will point out how the ICF framework was used—and expanded upon—to provide a model for studying the impact of factors on changes in QoL for youth with chronic conditions. Further, it will describe the instruments that were chosen to measure the components of the ICF framework and the data analysis techniques that will be used to examine the impact of factors on changes in youths’ QoL.

Conclusions: Qualitative and longitudinal designs for studying QoL based on the ICF framework can be useful for unraveling the complex ongoing inter-relationships among functioning, contextual factors and individuals’ perceptions of their QoL.     

Robots and ICT to support play in children with severe physical disabilities: a systematic review

Purpose: Play is an essential part of children’s lives. Children with physical disabilities experience difficulties in play, especially those with severe physical disabilities. With the progress of innovative technology, the possibilities to support play are increasing. The purpose of this literature study is to gain insight into the aims, control options and commercial availability of information and communication technology (ICT) and robots to support play (especially play for the sake of play) in children with severe physical disabilities. Methods: A systematic literature search in the databases PubMed, CINAHL, IEEE and ERIC was carried out. Titles and abstracts were assessed independently by three reviewers. In addition, studies were selected using Google Scholar, conference proceedings and reference lists. Results: Three main groups of technology for play could be distinguished: robots (n = 8), virtual reality systems (n = 15) and computer systems (n = 4). Besides, ICT and robots developed for specific therapy or educational goals using play-like activities, five of the in total 27 technologies in this study described the aim of “play for play’s sake”. Conclusions: Many ICT systems and robots to support play in children with physical disabilities were found. Numerous technologies use play-like activities to achieve therapeutic or educational goals. Robots especially are used for “play for play’s sake”.

• Implications for Rehabilitation

• This study gives insight into the aims, control options and commercial availability for application of robots and ICT to support play in children with severe physical disabilities.

• This overview can be used in both the fields of rehabilitation and special education to search for new innovative intervention options and it can stimulate them to use these innovative play materials.

• Especially robots may have great potential in supporting “play for play's sake”.

     

How are actual needs recognized in the content and goals of written rehabilitation plans?

Abstract

Purpose: The primary aim of the study was to investigate the interrelation between needs and functional difficulties and the therapeutic goals in children with cerebral palsy (CP) as documented in individual written rehabilitation plans. Method: The study was a retrospective cross-sectional register study. The data consisted of randomly chosen register documents for 77 children and adolescents with CP in different predetermined age ranges. The International Classification of Functioning, Disability and Health – Child and Youth version (ICF-CY) was used as a reference for analyzing the content of the written statements. Results: The rehabilitation plans for 70 children, 1–16 years of age, representing all GMFCS levels were analyzed. Goals were not well reflected in the children’s needs and functional difficulties. The needs, functional difficulties and goals mainly encompassed the components of body functions and activity/participation. In half of the plans the presence of the parents was mentioned, and the plans were made in multidisciplinary collaboration. Conclusions: The results of this study indicate deficiencies in the content and goals of the written rehabilitation plans. The ICF-CY could serve as a framework to help professionals and parents identify the child’s needs and those areas where the goals should be targeted.

• Implications for Rehabilitation

• Documenting the child’s and family’s needs in relation to activity and participation preferences is critical to rehabilitation and intervention planning.

• Goals, based on the child’s needs, should be identified in collaboration with all parties involved, and focus on the child’s functioning in meaningful everyday activities.

• The ICF-CY could serve as a framework for the family and professionals to identify needs and to communicate rehabilitation goals.

     

The uses of outcome measures within multidisciplinary early childhood intervention services: a systematic review

Abstract

Purpose of the article: To review the use of outcome measures, across the domains of activity, participation, and environment, within multidisciplinary early childhood intervention services.

Materials and methods: A systematic literature search was undertaken that included four electronic databases: Medline, CINAHL, EMBASE, and the Cochrane Library and Cochrane Database of Systematic Review. Inclusion criteria were age 0–24 months, having or at risk of a developmental disability, in receipt of multidisciplinary early childhood intervention services, and included outcome measures across all domains of the International Classification of Functioning-Child & Youth (ICF-CY). Only peer-reviewed journal articles were considered. Eligible studies were coded using the Oxford Levels of Evidence. Methodological quality was assessed using the Physiotherapy Evidence Database (PEDro) Scale for randomised controlled trials and the QualSyst for non-randomised control trials.

Results: Of the total of 5764 records identified, 10 were considered to meet inclusion criteria.

Conclusion: Fourteen outcome measures were identified, addressing the domains of activity, participation, and environment. Of these, eight have been recommended in the early intervention literature. While the methodological quality of the 10 studies varied, these papers make a contribution to the body of research that acknowledges the role of routine and enriched environments.

• Implications for Rehabilitation

• Core practice elements of multidisciplinary early childhood intervention services indicate it is necessary to select outcome measures framed within the International Classification of Functioning-Child & Youth to inform clinical decision-making for measuring intervention effectiveness across the domains of activity, participation and environment.

• Of the identified measures, three (Canadian Occupational Performance Measure, Pediatric Evaluation of Disability Inventory, and Goal Attainment Scaling) are well-established and identified in the literature as multidisciplinary outcome measures for children with developmental disability.

• The selection of an appropriate outcome measure depends on the age of the child, individual goals of the family, and the type of intervention.

• This requires the combination of measures as no one measure alone will capture all components of the International Classification of Functioning-Child & Youth.

     

The Communication Supports Inventory-Children & Youth (CSI-CY), a new instrument based on the ICF-CY

Purpose: Two studies are presented that evaluated the Communication Supports Inventory-Children & Youth (CSI-CY), an instrument designed to facilitate the development of communication-related educational goals for students with complex communication needs (CCN). The CSI-CY incorporates a code set based on the ICF-CY. The studies were designed to determine the effect of using the CSI-CY on IEP goals for students with CCN and to evaluate consumer satisfaction.

Method: In Study 1, sixty-one educators and speech–language pathologists were randomly assigned to either (a) provide a student’s current IEP (control group) or (b) complete the CSI-CY prior to preparing a student’s next IEP and to submit the new IEP (experimental group). Study 2 was a field test to generate consumer satisfaction data.

Results: Study 1 showed that IEP goals submitted by participants in the experimental group referenced CSI-CY-related content significantly more frequently than did those submitted by control participants. Study 2 revealed high satisfaction with the instrument.

Conclusions: The code set basis of the CSI-CY extends the common language of the ICF-CY to practical educational use for children with CCN across diagnostic groups. The CSI-CY is well regarded as an instrument to inform the content of communication goals related to CCN.

• Implications for Rehabilitation

• The CSI-CY will guide rehabilitation professionals to develop goals for children with complex communication impairments.

• The CSI-CY is a new instrument that is based on the ICF-CY for documentation of communication goals.