Turn-taking and communication modes of students and staff in group activities at non-inclusive schools for students with intellectual disability.

Most students with intellectual and communicative disability who rely on augmentative and alternative communication (AAC) attend non-inclusive school settings. Little is known about turn-taking and the use of various communication modes in groups of students and staff in this context. Previous studies on single students with intellectual disability in various school settings have found that staff tend to dominate interactions and augmented communication modes are used more during structured than unstructured activities. The present study explored turn-taking contributions and communication modes in whole groups of students and staff in non-inclusive school settings in Sweden. Video observations of 33 students and 30 school staff were conducted in seven classrooms during one structured activity (circle time) and one unstructured activity (leisure time). Turn-taking contributions and communication modes were examined when comparing students and staff and when comparing the two activities. Findings revealed that staff dominated the interactions and augmented communication modes were used less during leisure time than circle time. Notably, aided augmented communication modes, particularly speech-output technologies, were used sparsely. Findings of this study highlight the importance of supporting staff members in applying partner strategies and incorporating augmented input, especially aided augmented input, across various group activities at school.

Partnering for change (P4C) in Sweden- a study protocol of a collaborative school-based service delivery model to create inclusive learning environments.

BACKGROUND: Inclusive learning environments are considered as crucial for children's engagement with learning and participation in school. Partnering for change (P4C) is a collaborative school-based service delivery model where services are provided at three levels of intensity based on children's needs (class, group-, individual interventions). Interventions in P4C are provided universally to support all children with learning, not only children with special education needs (SEN), and as such are expected to be health-promoting. AIM: The aim of the study is to evaluate the effectiveness and cost-effectiveness of P4C as well as school staff members' and children's experiences after P4C. METHODS: In a parallel, non-randomised controlled intervention design, 400 children, aged 6-12 years, and their teachers, will be recruited to either intervention classes, working according to the P4C, or to control classes (allocation ratio 1:1). Data will be collected at baseline, post-intervention (4 months), and 11 months follow-up post baseline. The primary outcome is children's engagement with learning in school. Secondary outcomes include for example children's health-related quality of life and wellbeing, occupational performance in school, attendance, and special educational needs. The difference-in-differences method using regression modelling will be applied to evaluate any potential changes following P4C. Focus group interviews focusing on children, and professionals' experiences will be performed after P4C. A health economic evaluation of P4C will be performed, both in the short term (post intervention) and the long term (11-month follow-up). This study will provide knowledge about the effectiveness of P4C on children's engagement with learning, mental health, and wellbeing, when creating inclusive learning environments using a combination of class-, group- and individual-level interventions. TRIAL REGISTRATION NUMBER: NCT05435937.

Musical interaction with children and young people with severe or profound intellectual and multiple disabilities: a scoping review.

This scoping review addresses peer-reviewed research on musical interaction with children and young people with severe/profound intellectual and multiple disabilities (S/PIMD). Twenty-five articles published between the years 2000 and 2020 met the inclusion criteria. A narrative synthesis was used to summarise and evaluate different features, including participant characteristics, study design and methods, type of musical interaction, the abilities and behaviours in focus, reported benefits, promising components of musical interaction, and quality appraisal of the studies. The results revealed a variation in participant characteristics and study designs, where small-sample descriptive case studies were most common. In terms of the type of musical interaction, active music therapy was the most commonly used approach, followed by technology-mediated and multisensory musical activities. In terms of abilities and behaviours, a large majority of the studies focused on social interaction and communication, followed by engagement, attention and affect. Six categories were identified as promising components of musical interaction: the responsivity of the interaction partner, singing songs, structure and predictability in the activities, long-term interventions, technology-mediated and multisensory musical activities, and a therapeutic alliance between interaction partners. Based on this review, we discuss future research and practical implications for musical interaction and music therapy for children and young people with S/PIMD.

The involvement matrix as a framework for involving youth with severe communication disabilities in developing health education materials.

INTRODUCTION: Involving youth with severe communication disabilities in health research is foregrounded in a perspective of rights and participation. Researchers aligned with a participatory and inclusive research agenda recommend that involving youth in health research should be a deliberate and well-planned process. However, limited examples exist of how researchers can facilitate the involvement of youth with severe communication disabilities in research projects. METHOD: The aim of this paper was to describe the application of the Involvement Matrix as a conceptual framework to guide the three phases of a research project with youth with severe communication disabilities. RESULTS: Six youth aged 19-34 years consented to be involved in the project. All youth had a severe communication disability and used augmentative and alternative communication (AAC) to support their involvement in the research project. The Involvement Matrix provided a structure to delineate four involvement roles in three research phases: In Phase 1, youth were listeners to research information and advisors in the needs analysis. In Phase 2, as advisors and decision-makers, youth provided their opinions on selecting picture communication symbols for health materials. In Phase 3, as partners, they were copresenters at an online youth forum. CONCLUSION: The Involvement Matrix was used to plan and implement the involvement of youth with severe communication disabilities in codeveloping health materials for use during the COVID-19 pandemic. The Involvement Matrix can be applied together with AAC to enable meaningful involvement of youth in a health research project as listeners, advisors, decision-makers and partners. PATIENT OR PUBLIC CONTRIBUTION: This study project was codeveloped with youth with severe communication disabilities who use AAC in South Africa. A person with lived experience was involved as an advisor to the health material development process and in the drafting of the manuscript.

Participation in daily life for adults with profound intellectual (and multiple) disabilities: How high do they climb on Shier's ladder of participation?

Participation is the goal of Swedish disability policy, but it is difficult to achieve for adults with profound intellectual (and multiple) disabilities (PI(M)D). Since these adults are dependent on others in every aspect of their lives, others control their ability to participate in everyday life decisions. This study used observations, analyzed with Shier's ladder of participation, to elucidate and describe participation in daily life for adults with PI(M)D living in a group home. The results showed that the adults often reached the first three levels of Shier's ladder, one adult reached the fourth level once, and no one reached the fifth level. Participation on a higher level, therefore, seems hard to reach for adults. Staff members' attitudes toward the adults' capability can also be a barrier to participation. Applying Shier's ladder of participation can provide valuable information that might lead to increased participation in daily life for adults with PI(M)D.

A Cooperative Learning Intervention to Promote Social Inclusion in Heterogeneous Classrooms.

Concerning challenges with the social inclusion of children with special educational needs (SEN), it is imperative to evaluate teacher interventions that promote social inclusion. This study aimed to investigate the effects of cooperative learning (CL) intervention on social inclusion. In addition, it was investigated to what degree CL implementation affected the outcomes. Fifty-six teachers of 958 fifth-grade children were randomly selected to intervention and control groups upon recruitment to the study. The intervention teachers received training and coaching in CL and implemented this approach three to four times a week for 15 weeks. The results showed a significant but small effect of CL on children's social acceptance, but no significant effect on children's friendships and perceptions of classroom relationships. The degree of CL implementation had effect on children's social acceptance, but the effect was not consistent across social acceptance measures as a friend or a groupmate. Thus, it can be concluded that CL, conducted with the length and intensity of this study, may not lead to substantial changes in the social inclusion of children with SEN. In future studies, more focus needs to be devoted to teacher implementation of the CL approach.

Staff members and managers' views of the conditions for the participation of adults with profound intellectual and multiple disabilities.

BACKGROUND: Participation is a central aspect of quality of life, and it is indicative of high-quality outcomes for people with intellectual disabilities. However, participation is difficult to achieve for adults with profound intellectual and multiple disabilities. AIM: To describe staff members' perceptions of what participation means for adults with profound intellectual and multiple disabilities. METHOD: Using a phenomenographic approach, 27 interviews were analysed resulting in variations in the conditions for participation. RESULTS: The interviews revealed conditions for participation at individual, staff and organisational levels. CONCLUSION: Participation appears to be an un-reflected phenomenon, and several conditions must be met to achieve it. The conditions are experienced being fundamental for adults within the target group to achieve any kind of participation. The staff members and managers' perceptions of participation as conditional can make it more difficult for adults within the target group to achieve the Swedish disability policy goal of participation.

Staffs' documentation of participation for adults with profound intellectual disability or profound intellectual and multiple disabilities.

PURPOSE: This study investigated what areas of International Classification of Functioning, Disability and Health were documented in implementation plans for adults with profound intellectual disability or profound intellectual and multiple disabilities with focus on participation. METHODS: A document analysis of 17 implementation plans was performed and International Classification of Functioning, Disability and Health was used as an analytic tool. RESULTS: One hundred and sixty-three different codes were identified, especially in the components Activities and participation and Environmental factors. Participation was most frequently coded in the chapters Community, social and civic life and Self-care. Overall, the results showed that focus in the implementation plans concerned Self-care and Community, social and civic life. The other life areas in Activities and participation were seldom, or not at all, documented. CONCLUSIONS: A deeper focus on participation in the implementation plans and all life areas in the component Activities and participation is needed. It is important that the documentation clearly shows what the adult wants, wishes, and likes in everyday life. It is also important to ensure that the job description for staff contains both life areas and individual preferences so that staff have the possibility to work to fulfill social and individual participation for the target group. Implications for rehabilitation There is a need for functioning working models to increase participation significantly for adults with profound intellectual disability or profound intellectual and multiple disabilities. For these adults, participation is achieved through the assistance of others and support and services carried out must be documented in an implementation plan. The International Classification of Functioning, Disability and Health can be used to support staff and ensure that information about the most important factors in an individual's functioning in their environment is not omitted in documentation.

Stability and change in sustainability of daily routines and social networks in families of children with profound intellectual and multiple disabilities.

BACKGROUND: Children with profound intellectual and multiple disabilities (PIMD) demand intense family accommodations from birth and onwards. This study used an exploratory and qualitative study design to investigate stability and change in sustainability of daily routines and social networks of Swedish families of children with PIMD. MATERIALS AND METHODS: Eight families participated over two years in eco-cultural family interviews and social networks interviews collected at home visits. Data were analyzed descriptively and by manifest contents analysis. RESULTS: Results showed variations in sustainability of daily routines over time across families. The sustainability was linked to fathers' involvement, couples' connectedness and emotional support. Stability and change of social networks were characterized by low overlap between the child and family networks, the children's communicative dependency and low density of able communication partners. CONCLUSIONS: The results indicate that patterns of stability and change were linked both to family resources and child characteristics.

Strategies that facilitate participation in family activities of children and adolescents with profound intellectual and multiple disabilities: parents' and personal assistants' experiences.

PURPOSE: Participation throughout one's life plays a significant role for development and emotional well-being. For this reason, there is a need to identify ways to facilitate participation in family activities for children and adolescents with profound intellectual and multiple disabilities (PIMD). METHODS: The study design was qualitative and explorative, based on semi structured interviews with 11 parents and 9 personal assistants of children with PIMD. RESULTS: The interviews revealed participation-facilitating strategies relating to the children's/adolescent's proximal environment, such as "Availability and acceptability of the activity", "Good knowledge about the child" and a "A positive attitude of people close to the child", as well as strategies related to the children/adolescents themselves: "Sense of belonging", "Possible for the child/adolescent to understand", "Opportunities to influence" and "Feeling of being needed". CONCLUSIONS: Children and adolescents with PIMD are dependent on support obtained through their environment. The identified strategies, individually adapted through awareness and knowledge by the parents and the personal assistants, provide important evidence to assist our understanding in gaining understanding about how to improve participation in family activities of children and adolescents with PIMD. IMPLICATIONS FOR REHABILITATION: Participation-facilitating strategies related to the child/adolescent and his or her proximal environments are identified to improve participation in children and adolescents with profound intellectual and multiple disabilities (PIMD). Examples of strategies for the child's/adolescents' proximal environment include "good knowledge about the child/adolescent", and, for the child/adolescent, include creating "sense of belonging" and "opportunities to influence". Identifying and making these strategies explicit may assist in enhancing the participation of children and adolescents with PIMD in family activities. People in the child's/adolescent's proximal environment need to set the scene for participation.

The International Classification of Functioning, Disability and Health and the version for children and youth as a tool in child habilitation/early childhood intervention--feasibility and usefulness as a common language and frame of reference for practice.

Early childhood intervention and habilitation services for children with disabilities operate on an interdisciplinary basis. It requires a common language between professionals, and a shared framework for intervention goals and intervention implementation. The International Classification of Functioning, Disability and Health (ICF) and the version for children and youth (ICF-CY) may serve as this common framework and language. This overview of studies implemented by our research group is based on three research questions: Do the ICF-CY conceptual model have a valid content and is it logically coherent when investigated empirically? Is the ICF-CY classification useful for documenting child characteristics in services? What difficulties and benefits are related to using ICF-CY model as a basis for intervention when it is implemented in services? A series of studies, undertaken by the CHILD researchers are analysed. The analysis is based on data sets from published studies or master theses. Results and conclusion show that the ICF-CY has a useful content and is logically coherent on model level. Professionals find it useful for documenting children's body functions and activities. Guidelines for separating activity and participation are needed. ICF-CY is a complex classification, implementing it in services is a long-term project.

AAC interventions for children in a family environment: implementing evidence in practice.

Interventions that focus on implementing augmentative and alternative communication (AAC) strategies and methods have been available to children in need of AAC and their families for at least 30 years. To date, most of the research that has considered AAC in family settings has been focused on gathering evidence of the effects of AAC interventions, rather than on implementing evidence-based strategies in everyday practice to improve outcomes. The purpose of this article is to discuss the research that has focused on parents as AAC interventionists, the family as a context for AAC intervention, and the effects of AAC interventions on children and other family members. The discussion is framed within the four steps associated with the process of knowledge translation: (a) deciding on desired outcomes of interventions, (b) evaluating evidence of the effectiveness of different AAC methods to obtain the desired outcomes, (c) translating the research evidence into everyday practice, and (d) implementing knowledge in practice.

Studying interaction between children who do not use symbols in interaction and their parents within the family system--methodological challenges.

PURPOSE: To parents of children with profound multiple disabilities who do not use symbols in interaction a successful outcome of dyadic interaction with their children consists of shared experiences, mutual joy and understanding. In the last two decades interaction intervention for these parents and their children has become an issue for research with the aim to identify factors that facilitate mutually rewarding parent-child interaction. Interaction patterns between the child and his/her caregivers must be studied, assessed and intervened within relation to the family system and how it changes over time. The aim of this article is to discuss the methodological challenges in studying parent-child interaction in the context of the family system. METHOD: Research methods designed to handle complexity, multidimensionality, heterogeneity among research subjects and small number of participants in the analysis are described. CONCLUSIONS: It is concluded that the theories and methods used must guide the researcher in how to delimit a manageable number of factors to include in the analysis, in how to analyse the interrelationships between the factors, and in how to study changes in patterns of factors over time. Prerequisites to meet the methodological challenges are that the constructs investigated have a sound theoretical base and that longitudinal data are collected.