How can we reach long-lasting inclusive participation for all? A vision for the future.

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.

How did youth with cerebral palsy perceive participation in everyday life after participating in a periodical intensive rehabilitation program based on adapted physical activity in groups? A qualitative interview study.

PURPOSE: Explore how youths with CP experience participation in everyday life, their experience of having participated in a periodical intensive rehabilitation programme and their expectations for the future. MATERIALS & METHODS: A qualitative design that included semi-structured interviews with 14 youths with CP (mean age 17 years). RESULTS: The qualitative content analysis exposed six themes, (1) Everyday life - to get the pieces of your life to fit together, (2) Participation means inclusion and belonging - the meaning of life, (3) Individual and environmental factors influencing participation, (4) Experience of physical and social activities away from home together with like-minded people, (5) To be continued locally, and (6) You do not know the future, anything can happen - visions for the future. CONCLUSIONS: Participation in everyday life increases the meaning of life but takes energy. Periodical intensive rehabilitation programme enabled youths to try new activities, make friends and increase self-insight in their own strengths and limitations.IMPLICATIONS FOR REHABILITATIONYoung people with cerebral palsy (CP) describe participation as the meaning of life and state that it is essential for inclusion and being able to contribute to societyAdaptation of environmental factors including collaboration across service sectors and capacity building in young people within their preferred life situations appear to be essentialA periodical intensive rehabilitation, including adapted physical activities in groups, is recommended to provide peer learning and mastery experiences in young people with CP.Young people with CP seem to have the same hopes for the future as their typically developing peers.

Reliability of FUNDES-Child-SE - measuring participation and independence of children and youths with disabilities.

BACKGROUND: There 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. AIMS: Test the psychometric properties of internal consistency and test-retest reliability. MATERIAL AND METHODS: This 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 Cronbach's alpha and the intra-class correlation coefficient. RESULTS: The 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). CONCLUSIONS: The 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 instrument's responsiveness. SIGNIFICANCE: FUNDES-Child-SE can be used to facilitate a discussion of participation and independence and to plan interventions in a habilitation setting.

A Swedish cultural adaptation of the participation questionnaire Functional Scale of the Disability Evaluation System - Child version.

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.

Exploring two subdimensions of participation, involvement and engagement: A scoping review.

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.

How transactional relations contribute to adaptive developmental outcomes when young people with disabilities participate in specially designed group programs - a scoping review.

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.

Interrater and test-retest reliability of the Hand Assessment for Infants.

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. What this study adds The Hand Assessment for Infants (HAI) shows excellent reliability. A change of ≥3 HAI units is considered a true change. The HAI yields reliable measures for research and clinical practice.

Testing ActiveYou II: Applying Cognitive Interviews in Improving Item Quality and Applicability of a Web-Based, Self-Report Instrument on Participation in Children with Disabilities.

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.

Perceived facilitators and barriers for participation in leisure activities in children with disabilities: Perspectives of children, parents and professionals.

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. CONCLUSION AND SIGNIFICANCE: Knowledge from this study is important for the improvement of rehabilitation interventions that aim to increase participation in leisure activities for children and youth with disabilities.

ActiveYou I - a new web-based measure of activity preferences among children with disabilities.

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 α ≥ 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.

A Strength-Based Intervention to Increase Participation in Leisure Activities in Children with Neuropsychiatric Disabilities: A Pilot Study.

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.

The coolest I know - a qualitative study exploring the participation experiences of children with disabilities in an adapted physical activities program.

Purpose: The first aim of the study was to obtain a broader understanding of how children 10-13 years old with disabilities experience participation in self-selected physical activities during an intensive group rehabilitation program. A second aim was to explore how new skills and experiences gained from intensive group rehabilitation can be transferred to meaningful participation in local environments.Material and methods: Individual in-depth interviews obtained the perspectives on participation of a purposive sample of eleven children with disabilities. The study applied inductive thematic coding of the content associated with participation followed by deductive analysis.Results: Five main themes were derived; "to learn and to show others new activities", "belonging, solidarity and friendship", "activity and participation enjoyment", "participation on my own terms" and "transfer to the local environment at home". To practice and learn physical activities during intensive group rehabilitation seemed to enhance transferring of meaningful participation to the local environment, and was related to the children's activity competence, preferences and self-efficacy.Conclusions: The rehabilitation stay created a setting where children learned diverse activities together with equal peers, which resulted in mastery, friendship and enjoyment. The children participated on their own terms, and continued to do so in their local environment.Implications for RehabilitationA context of freedom to learn preferred adapted physical activities on children's own terms is important for transferring meaningful participation to local environments.A high intensity rehabilitation program with enough time to try and to learn diverse adapted physical activities is essential to increased activity competence in children with disabilities.Attendance in a group of equal peers provides opportunities to experience new roles and thus strengthens the sense-of-self and creates a feeling of belonging, solidarity, friendship and joy.

Measures used to quantify participation in childhood disability and their alignment with the family of participation-related constructs: a systematic review.

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.

Enabling physical activity participation for children and youth with disabilities following a goal-directed, family-centred intervention.

BACKGROUND: There is a paucity of research demonstrating the optimisation and maintenance of participation outcomes following physical activity interventions for children and youth with disabilities. AIM: To evaluate changes in physical activity participation in children with disabilities following a goal-directed, family-centred intervention at a healthsports centre, and to identify factors influencing participation following the intervention. METHODS AND PROCEDURES: A mixed methods pre-test post-test cohort design was applied. Recruitment occurred over a 12 month period during standard clinical service provision. The Canadian Occupational Performance Measure (COPM) was administered to children and parents pre (T1) and post-intervention (T2), and at 12 weeks follow-up (T3). Goal Attainment Scaling (GAS) was applied to assess outcomes at 12 weeks follow-up (T2-T3). Qualitative inquiry described barriers to goal attainment at T3. OUTCOMES AND RESULTS: Ninety two children with a range of disabilities (mean age 11.1yr; 49 males) were included in the study. Statistically significant and clinically meaningful improvements in parent ratings of COPM performance and satisfaction of participation goals were observed following intervention. Ratings at 12 weeks follow-up remained significantly higher than baseline, and 32% of children attained their COPM-derived GAS goal. Environmental factors were the most frequent barrier to goal attainment following intervention. CONCLUSION AND IMPLICATIONS: These results provide preliminary evidence for goal-directed, family-centred interventions to optimise physical activity participation outcomes for children with disabilities.

Mini-MACS: development of the Manual Ability Classification System for children younger than 4 years of age with signs of cerebral palsy.

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 30.2mo [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.

'Participation': a systematic review of language, definitions, and constructs used in intervention research with children with disabilities.

AIM: Improving participation of children with disabilities is a priority; however, the participation construct lacks clarity. This systematic review investigated how researchers defined 'participation' and the language used in participation intervention research. METHOD: Nine health and education databases were searched for intervention studies of children with disabilities that included a participation outcome. Quantitative data were extracted using a customized form, and participation text data were extracted verbatim. Themes were derived using a thematic coding approach. These participation themes were applied to the outcome measures used in the included studies to compare participation language with the methods used to quantify participation changes. RESULTS: Of the 2257 articles retrieved, 25 were included in this review. Five participation themes and nine subthemes were developed. Two themes, attendance and involvement, were directly related to the participation construct. Three additional themes described related concepts: preferences, activity competence, and sense of self. INTERPRETATION: Attendance and involvement seem to describe the essence of the participation concept. The related themes may provide important avenues to enhance participation outcomes. This review highlighted the need for researchers to define the construct under investigation clearly and select measures carefully, as measurement choice is the mechanism through which the concept is operationalized in research.

Optimising leisure participation: a pilot intervention study for adolescents with physical impairments.

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 REHABILITATION: This 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.

The effect of interventions aimed at improving participation outcomes for children with disabilities: a systematic review.

AIM: Enhancement of participation has been described as the ultimate outcome for health and educational interventions. The goal of this systematic review was to identify and critically appraise studies that aimed to improve the participation outcomes of children with disabilities. METHOD: Nine databases that index literature from the fields of health, psychology, and education were searched to retrieve information on research conducted with children with disabilities aged between 5 years and 18 years. Articles were included if the author(s) reported that participation was an intended outcome of the intervention. The articles included were limited to those reporting high-level primary research, as defined by Australia's National Health and Medical Research Council evidence hierarchy guidelines. No restrictions were placed on the type of intervention being investigated. RESULTS: Seven randomized controlled or pseudo-randomized studies were included. Only three of these studies identified participation as a primary outcome. Both individualized and group-based approaches to enhancing participation outcomes appeared to be effective. Studies of interventions with a primary focus on body function or activity level outcomes did not demonstrate an effect on participation outcomes. INTEPRETATION: Few intervention studies have focused on participation as a primary outcome measure. Approaches using individually tailored education and mentoring programmes were found to enhance participation outcomes, while exercise programmes, where participation was a secondary outcome, generally demonstrated little effect.

Differences in patterns of participation in leisure activities in Swedish children with and without disabilities.

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's educational 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. A t-test for independent samples was used to compare the diversity and intensity of participation between children with and 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 of participation. 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. Implications for Rehabilitation Children with disabilities participated in a high number of activities but with a low intensity compared to children without disabilities. Analysis of the children's personal and environmental barriers and facilitators is critical to providing the therapist with ideas about which strategies should be implemented to increase participation. Assessment and intervention may need to focus on methods for supporting the children's autonomy and on creating goals for intervention that focus on activities that are determined by the child based on their interests and desires. Age and gender influenced the variance in the diversity and enjoyment outcome and the presence of disability was associated with the intensity outcome. Age, gender, parental educational level, and disability only explain a small proportion of the variance in leisure participation patterns. Thus, client-centred and individually tailored interventions are needed that are based on the individual's unique situation.