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Background: Disabilities can hinder children’s and youths’ participation (frequency of attendance and engagement) and independence in everyday life. Aims: To identify factors that predict levels of participation and independence in everyday activities in Swedish children and youths with disabilities. Material and methods: This cross-sectional study, including 131 participants, utilised instruments about child and environmental factors. LASSO regression analyses were conducted to identify predictors of participation and independence. Results: An item screening for comprehension difficulties was the strongest predictor of attendance, engagement, and independence in daily activities. Other influential child factors included the presence of seizures, speech abilities, age, pain levels, and motor functions. None of the studied environmental factors were retained as predictors in the models. Conclusions: Difficulties in intellectual functioning need to be evaluated and considered in planning interventions to improve participation and independence. Likewise, multifaceted nature of challenges found in this study underscores the need for diversity of interventions tailored for individual needs. Significance: The result underscores the critical role of comprehension and intellectual functioning in predicting and enhancing participation and independence in children and youths with disabilities, advocating for comprehensive assessments and sustained support.

BackgroundFUNDES-Child-SE is a proxy rating questionnaire for measuring participation and independence in children with disabilities in a Swedish context. It includes the components of frequency of attendance, engagement and independence. The original, Taiwanese FUNDES-Child 7.0, has previously been found to have a four-factor structure for frequency of participation and a two-factor structure for independence. The aim of this study was to test the factor structure in FUNDES-Child-SE. The factor structure is an important part of construct validity.MethodsCaregivers of 163 children with disabilities aged 6-18 years participated in this cross-sectional study. Exploratory factor analysis was used to find the factor structure for Engagement. Confirmatory factor analysis was used to test the factor structure for all three components.ResultsThe proposed factor structure for frequency of participation (daily living participation frequency, mobility participation frequency, learning participation frequency and community participation frequency) and independence (daily living independence and social participation independence) fit with data from FUNDES-Child-SE after excluding three to five items and adding two to five covariances of residuals. In the engagement component, two factors, named engagement in informal activities and engagement in formal activities, were found. After excluding one item and adding 10 covariances of residuals, the factor structure had an acceptable fit to data.ConclusionsDifferences in components' factor structure indicate that attendance and engagement are separate aspects of participation. Before using numeric scores from FUNDES-Child-SE in clinical settings, responsiveness and interpretability should be evaluated.

In 2022, an international conference was held focusing on ‘participation’. We shared current evidence, identified knowledge gaps and worked together to understand what new knowledge and community and practice changes were needed. This brief communication is a summary of the conference delegates' discussions. We present the key assumptions we make about participation and propose what is needed to create change for societies, communities, families and individuals. While we have some robust evidence to support participation approaches, more is needed, and it is everyone's responsibility to build an inclusive society where participation for all is the reality., Article; Export Date: 02 April 2024; Cited By: 0; Correspondence Address: A. Ullenhag; Department of Physiotherapy, Academy of Health, Care and Welfare, Mälardalens University, Västerås, Sweden; email: anna.ullenhag@mdu.se; CODEN: CCHDD

BackgroundThere is a need for an instrument to measure participation and independence in children with disabilities. FUNDES-Child-SE has its origin in the participation questionnaire Child and Adolescent Scale of Participation.AimsTest the psychometric properties of internal consistency and test-retest reliability.Material and methodsThis cross-sectional study included caregivers of 163 children with disability aged 6-18 years, 59 of whom were also included in the test-retest study. Descriptive statistics were used to evaluate the proportions of valid ratings. Internal consistency and test-retest reliability were tested through Cronbachs alpha and the intra-class correlation coefficient.ResultsThe amount of not relevant/not applicable ratings was substantial but varied between items and subdomains. Internal consistency was acceptable (0.8-0.95), and the test-retest was marginal to excellent (0.73-0.95).ConclusionsThe reliability together with the content validity support the use of the FUNDES-Child-SE to measure participation and independence in children with disabilities. However, results should be interpreted with caution due to the small sample size and possible selection bias. Modifications to reduce the not relevant/not applicable responses should be investigated together with the instruments responsiveness.SignificanceFUNDES-Child-SE can be used to facilitate a discussion of participation and independence and to plan interventions in a habilitation setting., Funding Agencies|Swedish Research Council [2018-05824_VR]; Sunnerdahls Handikappfond and Futurum; Academy for Healthcare, Region Jonkoping County

Purpose: The aim was to culturally validate a questionnaire about childrens/youths 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 questionnaires relevance by being a tool to assess important aspects of participation, to gain insights into ones own/the childs 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 childrens participation., Funding Agencies|Foundation of Linnea & Josef Carlsson, Sweden

Background: Meta-synthesis can enhance our existing knowledge regarding experiences of participation in group-based programs designed for young people with disabilities. Aim: This study aimed to identify the transactional relations between the social contexts in group programs and meaningful personal experiences and developmental processes for young people with disabilities. Method: For this research, 4 electronic data-bases were searched, 3406 citations were reviewed, and 13 qualitative studies describing experiences of participation in specially designed group-based programs from the perspective of young people with disabilities were included. A meta-ethnographic approach was used to synthesise the data, and resulting categories were conceptualised in King et al.'s framework of transactional processes and adaptive development. Results: Nineteen categories across six themes describing: environment, social context, social mechanisms, personal processes, meaningful experiences, and outcomes demonstrated the dynamic interrelation between social context and personal processes. Peer group interaction was essential for exploring capacities and developing strategies. Conclusion: This review highlights the important role of the peer group in transferring program experiences into the everyday life contexts of young people with disabilities. It may assist professionals who are considering the use of peer groups when planning participation-focussed programs aiming to facilitate personal development for young people with disabilities.

Background The conceptualisation of participation is an ongoing discussion with importance for measurement purposes. The aim of this study was to explore the two subjective subdimensions of participation, involvement and engagement. The purpose was related to measure development within the field of paediatric rehabilitation. Methods In a scoping review, following the PRISMA-ScR, the databases MEDLINE, PubMed, Academic Research Complete, PsychINFO, and Business Source Complete were searched for publications that described engagement and/or involvement constructs. Results Thirty-nine publications met the inclusion criteria. Involvement could be conceptualised as an unobservable state of motivation, arousal, or interest towards a specific activity or product. Building a consensus over different fields of research, engagement can be seen as the individual's behavioural, cognitive and affective investment during role performance. Conclusions This scoping review points in a direction that the two subdimensions of participation need to be separated, with involvement being a more stable internal state of interest towards an activity, and engagement referring to the specific behaviour, emotions, and thoughts meanwhile participating in a specific setting. Clear definition of concepts will enhance the development of measures to evaluate rehabilitation interventions in the field of occupational therapy and related fields.

Background: There is limited knowledge about facilitators and barriers to leisure activity participation for children with disabilities in Norway, which is needed to improve rehabilitation interventions. Aim: This study aims to explore the main facilitators and barriers for participation in leisure activities for children and youth with disabilities in Norway. Methods: Semi-structured group interviews with 31 parents, 20 healthcare professionals, and nine children with disabilities were conducted. Qualitative content analysis with thematic coding was used, and the model of factors affecting the participation of children with disabilities developed by King et al. was applied for further deductive analysis. Results: Child factors, as viewed by parents and professionals, worked primarily as barriers and tended to increase with the child's age. The children themselves focussed on their own preferences, friendship and enjoyment as their main facilitators for participation. Most environmental and family factors worked both as facilitators and as barriers, with parental support as the most important facilitator. Differences between urban and rural areas in the availability and accessibility of activities were reported.

Aim To evaluate the interrater and test-retest reliability, standard error of measurement (SEM), and the smallest detectable difference (SDD) of the Hand Assessment for Infants (HAI). Method HAI assessments of 55 infants (26 females, 29 males), 25 with clinical signs of unilateral cerebral palsy (CP) and 30 typically developing (mean [SD] age 6.8mo [2.4], range 3-11mo), were scored individually by three therapists. Three clinically experienced occupational therapists (OT 1-OT 3) with extensive experience in using the HAI, independently scored the video recorded HAI play sessions. Analysis of the combined group of infants and just the infants with clinical signs of unilateral CP (12 females, 13 males; mean age 7.6mo [2.1]) were conducted. Intraclass correlation coefficients (ICC, 2.1), Bland-Altman plots, SEM, and SDD were calculated. Results Interrater and test-retest reliability were excellent for the Both Hands Measure (BoHM) and the Each Hand Sum score (EaHS), with ICCs of 0.96 to 0.99. For individual items, the interrater and test-retest reliability was good to excellent (ICC 0.81-0.99). The SDD for the EaHS was 2 points, and for the BoHM the SDD it was 3 HAI units for infants with signs of unilateral CP. Interpretation The HAI results showed good to excellent reliability. The SDDs were low, indicating that results beyond these levels exceed the measurement error and, thus, can be considered true changes.

Background Children's preferences for activities are one of the most important predictors for participation. Currently no web-based measure of activity preferences exists for children with disabilities. Aim To develop and investigate feasibility and internal consistency of a new web-based measure of activity preferences, ActiveYou I for children with disabilities. Materials and methods The ActiveYou I was developed in three steps using a mixed-methods design. A review of the preferred goal activities of 149 children with disabilities was used to identify relevant activities. A pilot version of ActiveYou I was tested with 341 children with disabilities. Semi-structured group interviews and cognitive interviews were conducted with therapists and children with disabilities. Results Nineteen physical activities were included in the pilot version. The pilot trial resulted in two activities being excluded, and one activity added, leaving the instrument with eighteen activities. Internal consistency was acceptable (Cronbach's alpha >= 0.77). Interviews with therapists and children showed that ActiveYou I included relevant activities and was easy to answer. Conclusion ActiveYou I proves to be a valid and feasible, web-based instrument for mapping activity preferences in children and adolescents with disabilities. Significance Preferences are an important mediator for participation; consequently it is essential to seek activities that match the children's preferences.

BACKGROUND: Children and youth with disabilities participate less in leisure activities than their nondisabled peers. Increasing participation is a primary goal of rehabilitation interventions. However, valid measures that include the individual's perspectives and facilitating and hindering factors for participation are lacking in the Norwegian setting. In this study, ActiveYou II, a self-report, web-based instrument under development, was tested to obtain item quality and applicability. METHODS: Nine children with disabilities participated in cognitive interviews, testing a first set of ActiveYou II items. The verbal probe method for cognitive interviews was applied. RESULTS: The children's comprehension and responses through cognitive interviews improved the applicability and item quality of ActiveYou II. Item adjustments were made to the wording of the questions and response alternatives, and the number of response alternatives were decreased where appropriate. CONCLUSIONS: The use of cognitive interviews with children before performing further psychometric testing has been very useful in the development process of ActiveYou II. Adjustments of the questions and response alternatives were made accordingly.

The aim is to evaluate the feasibility of an intervention model with a client-centered goal-directed approach with the aim to enhance the child's participation in leisure activities, self-efficacy, and activity performance. A pilot intervention using a client-centered goal-directed approach and a single-subject design was performed. Two Swedish boys with neuropsychiatric diagnosis aged 12 and 14 years old were included, and 3 leisure activity goals were identified. The intervention was carried out over 8 weeks and took place in the adolescent's everyday environment and at the pediatric rehabilitation center. The goal attainment of participation goals (GAS), the perceived performance ability according to the Canadian Occupational Performance Measure (COPM), the self-efficacy, and the participants' satisfaction were used to study the effect. The participants succeeded in attaining their leisure goals as specified by the GAS by achieving +2 on one goal and +1 on the other two goals. They estimated higher performance ability and self-efficacy in their goal performance. Participants, parents, and therapists were overall satisfied and found the intervention to be applicable and helpful in optimizing leisure participation. The intervention model with a client-centered goal-directed approach in which participants define their own leisure activity goals appears to be effective in increasing participation in leisure activities.

AIM: We aimed to identify measures used to assess the participation of disabled children and to map the measures' content to the family of participation-related constructs (fPRC) to inform future research and practice. METHOD: Six databases were searched to identify measures used to assess participation in health, psychology, and education research. Included studies involved children aged 0 to 18 years with a permanent impairment or developmental disability and reported use of a quantitative measure of participation. A second search sought relevant literature about each identified measure (including published manuals) to allow a comprehensive understanding of the measure. Measurement constructs of frequently reported measures were then mapped to the fPRC. RESULTS: From an initial yield of 32 767 articles, 578 reported one or more of 118 participation measures. Of these, 51 measures were reported in more than one article (our criterion) and were therefore eligible for mapping to the fPRC. Twenty-one measures quantified aspects of participation attendance, 10 quantified aspects of involvement as discrete scales, and four quantified attendance and involvement in a manner that could not be separated. INTERPRETATION: Improved understanding of participation and its related constructs is developing rapidly; thoughtful selection of measures in research is critical to further our knowledge base. WHAT THIS PAPER ADDS: The fPRC can support our rapidly evolving and expanding understanding of participation. Instruments selected to measure participation do not always align with emerging concepts. Matching research aims to a chosen measure's content will improve understanding of participation. Opportunities exist to develop validated participation measures, especially self-reported measures of involvement.

AIM To develop the Mini-Manual Ability Classification System (Mini-MACS) and to evaluate the extent to which its ratings are valid and reliable when children younger than 4 years are rated by their parents and therapists. METHOD The Mini-MACS was created by making adjustments to the MACS. The development involved a pilot project, consensus discussions within an expert group, and the creation of a test version of the Mini-MACS that was evaluated for content validity and interrater reliability. A convenience sample of 61 children with signs of cerebral palsy aged 12 to 51 months (mean age 30.2 mo [SD 10.1]) were classified by one parent and two occupational therapists across a total of 64 assessments. Agreement between the parents' and therapists' ratings was evaluated using the intraclass correlation coefficient (ICC) and the percentage of agreement. RESULTS The first sentence of the five levels in the MACS was kept, but other descriptions within the Mini-MACS were adjusted to be more relevant for the younger age group. The ICC between parents and therapists was 0.90 (95% confidence interval [CI] 0.79-0.92), and for the two therapists it was 0.97 (95% CI 0.78-0.92). Most parents and therapists found the descriptions in the Mini-MACS suitable and easy to understand. INTERPRETATION The Mini-MACS seems applicable for children from 1 to 4 years of age.

Purpose: To assess the feasibility of an intervention to improve participation in leisure activities of adolescents with physical impairments by changing aspects of the activity or environment. Methods: A pre-test/post-test pilot study of a multi-strategy intervention was used to explore the effectiveness of the strategies and to determine whether the intervention was practical to apply in a community setting. The intervention involved establishing adolescent and family focused goals, measuring and addressing environmental barriers and building activity performance skills. The Goal Attainment Scale (GAS) and the Canadian Occupational Performance Measure measured outcomes. Results: Eight participants (aged 12-19 years; five males) with physical disabilities set participation goals using a structured approach. Analysis of personal and environmental barriers and facilitators for participation guided the choice of intervention strategies to support goal attainment. The natural environment, government policies and availability of transport were identified as the most frequent barriers to participation in leisure. Support to secure appropriate devices to enable participation was commonly required. As a group, attainment of 12 of 17 GAS goals, and progress on four more goals, was demonstrated. Conclusions: The intervention model was applicable and practical to use in a community therapy setting and the majority of the participation goals set were achieved.Implications for RehabilitationThis ICF-based intervention model was applicable and practical to use in a community therapy setting.The majority of the adolescent's leisure participation goals were achieved following engagement in the multi-strategy intervention.Adolescents with sufficient communication skills (CFCS Levels I-III) benefited from a group-based intervention in addition to individualised support.

Purpose: To compare participation in leisure activities between Swedish children with and without disabilities and to examine whether age, gender, presence of disabilities, and mother’ seducational level influence participation. Method: A Swedish version of the Children’s Assessment of Participation and Enjoyment was used to study the diversity, intensity, and enjoyment of participation in leisure activities of children aged 6 to 17 years. Fifty-five of the children had disabilities and 337 of the children did not have disabilities. A multiple regression analysis was conducted to explore the impact of age, gender, mother’s level of education, and disability on the diversity, intensity, and enjoyment of leisure activities. At-test for independent samples was used to compare the diversity and intensity of participation between children withand without disabilities. Results: The multiple regression analysis explained 4–36% of the variance of diversity, intensity, and enjoyment. Children with disabilities participated with higher diversity, but with less intensity, than children without disabilities. Younger children had higher levels of enjoyment. Conclusions: Children with disabilities participated in several different activities, but the presence of a disability was associated with lower intensity ofparticipation. The low explanatory value of the investigated variables indicates that the combined effect of several variables needs to be taken into consideration when designing participation interventions.

The World Health Organization (WHO) defines participation as a person’s involvement in a life situation, and to participate in leisure activities is one of the most important aspects of health and well-being. When a child is involved and engaged in a leisure activity, it gives the child a sense of belonging, opportunities to make friendships, and possibilities to develop physical and social competences and skills. Children with disabilities tend to be restricted in their abilities to participate in leisure activities due to mobility problems, communication disorders, and pain, but also as a result of negative attitudes from others and problems with transportation and accessibility. Knowledge of the personal and environmental factors that facilitate or hinder participation in leisure activities for children with disabilities is essential to be able to implement successful interventions with the aim of increasing participation. This requires a valid assessment of participation that can give both an objective and subjective view of the multidimensional construct. The overall aim of this doctoral thesis is to describe and compare patterns of participation in leisure activities of children with and without disabilities by cultural validation and use of the Children’s Assessment of Participation and Enjoyment/Preferences for Activities of Children (CAPE/PAC) in the Swedish context. A specific goal is to develop and implement a client-centred model of intervention with the aim of improving participation in leisure activities by children with disabilities. The result from Study I showed that the slightly modified Swedish version of the CAPE was valid for Swedish children. The outcome of standardized mean diversity score was significantly higher compared with the outcome of the original version of the CAPE, indicating that validation of the item relevance in the new context was necessary. The overall findings in Study II indicated that Swedish children with disabilities part

Objective: The aim was to evaluate whether the activity items of the Children's Assessment of Participation and Enjoyment/Preferences for Activities of Children (CAPE/PAC) were relevant for Swedish children. Subjects: A total of 337 typically developed children aged 6–17 years old. Methods: The CAPE/PAC was translated into Swedish in accordance with accepted translation procedures. By means of 14 group interviews with children with and without disabilities aged 6–15 years old and parents, available leisure activities were listed. These were matched to the items in the CAPE/PAC. Sixteen new potential activities were added and tested on 337 typical developed children from different regions of Sweden. A cutoff level of activities performed by >10% was set to identify relevant activities. Differences between the original and a proposed Swedish version were analysed using paired-samples t-tests of standardized mean scores. Results: Three new activity items were included, for 10 items new activity examples were added, and three not relevant items were excluded. In the Swedish version the outcome of standardized mean diversity score was significantly higher compared with the outcome of the original version. Conclusions:When using instruments in new contexts, it is not enough simply to translate; validation of the item relevance to the new context is essential.

Participation as a construct can be applied on all ecological levels from participation for individual children in their everyday life to participation for all as a societal goal. It is defined in the ICF-CY as involvement in a life situation. Participation is occurring at the nodal point between children and their environments. Contexts vary with socio-economical standards, culture and geographical characteristics and thus also the expressions of participation. This presentation will discuss cultural diversity in children’s participation in relation to the universal characteristics of participation defined as “being there” and participation defined as “degree of engagement while being there”. The utility of the ICF-CY as a tool to analyze universal characteristics and cultural diversity in conditions for, and actual experiences of, participation are examined in findings from five studies: 1) Maxwell et al. have analyzed national, regional and local educational policy documents in Scotland and Sweden regarding children in need of special support in relation to conditions for participation and participation; 2) Ståhl et al. have linked and compared ICF-CY codes to information regarding children’s health in Child Health Care and School Health Care and analyzed whether biomedical or participation information is the focus of the information; 3) Adolfsson et al. have collected and compared data from respondents in Sweden, the USA, and Portugal concerning what professionals consider to be important everyday situations for child participation; 4) Klang et al. has studied domains of participation and environment related to child and caregiver interaction in a Russian context to identify factors related to participation; and 5) Ullenhag et al. have studied participation in leisure activities and leisure activity preferences of Swedish children and compared with data from the Netherlands and Canada using the same questionnaire.