Jenny Wilder

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.

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 childrens 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.

Parent?-?child interaction: a comparison of parents' perceptions in three groups

Purpose: To evaluate a childrens version of the ICF that takes childrens dependency on their parents and a developmental perspective into consideration. Method: This study explored how 91 parents perceived child participation in terms of parent/child immediate interaction, and desires for ideal interaction in relation to body impairments and activity limitations. Similarities and differences were investigated in three matched groups of families through questionnaires. Group 1 consisted of parents of children with profound multiple disabilities, Group 2 was developmentally matched and Group 3 was matched according to chronological age. Results: The children with profound multiple disabilities expressed the same amount of emotions as the other groups, but they had difficulties expressing more complex emotions. Parents perceived the childrens behaviour styles in a similar way in the three groups. There were significant differences in how the immediate interaction was perceived with parents to children of Group 1 perceiving difficulties in maintaining joint attention and directing attention. Conclusions: The results suggest that parental perceptions of the interaction with their children with profound multiple disabilities in the immediate setting to a certain extent are related to the body impairments of the children but not strongly to communicative skills /activity limitations. Thus, to focus communication intervention on participation and interaction, assessment and questions to parents have to be focused directly on these issues.

Frequency of Occurrence and Child Presence in Family Activities : A Quantitative, Comparative Study of Children with Profound Intellectual and Multiple Disabilities and Children with Typical Development

Abstract Objectives: The objective was to investigate the performance aspect of participation, operationalized as the frequency of occurrence of family activities and child presence in these activities for children with profound intellectual and multiple disabilities (PIMD) and children with typical development (TD). The focus was also on how family and child characteristics are related to the frequency of occurrence of family activities. This is part of a larger research project investigating facilitating factors for participation in children with PIMD. Methods: A descriptive, comparative study was performed using a questionnaire developed for the purpose. Results: In the families with a child with PIMD, the majority of activities occurred less often than in families with children with TD. In both groups, relationships were found between the frequency of occurrence of family activities and total family income, as well as the educational level of the parents. For children with PIMD, motor ability, cognition, health, and behaviour, were related to frequency of occurrence. Moreover, the presence of the children in the activities differed in the two groups; the children with PIMD were present in the activities less often. Discussion: Considering a long-term perspective, low occurrence of family activities and child presence may affect child development and everyday functioning. Knowledge about factors related to the occurrence of family activities and child presence in them, as well as an understanding of its causes, can promote the provision of everyday natural learning opportunities for children with PIMD.

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.

Collaboration in Transitions from Preschool: Young Children with Intellectual Disabilities

Diversity can be defined as the qualities of having variety and catering for a wide range of different people. The concept of diversity is often thought of as the integration and inclusion of all ethnic/cultural groups, genders and ages in the community. Children with disabilities are part of the variety of society and disabilities can be considered as a diversity category alongside others. This chapter explores the educational transitions of young children with intellectual disabilities, especially focusing on collaboration between educational settings. The chapter describes an ongoing research project on the educational transitions of young children with intellectual disabilities in Sweden and its preliminary results. It also aims to widen the appraisal of diversity and inclusion in the discourses and practice of professionals who work with children in times of educational transition.

Video Observations of Dyadic Interaction: Behaviour style of Presymbolic Children

Research has shown that the behaviour style of children with multiple disabilities who do not use symbols in their communication affects their interaction with others. This study investigated the patterns of caregiver–child interaction and the relation between patterns of interaction and behaviour style in seven children with multiple disabilities who do not use symbols. Purposive sampling was employed and video recordings of caregiver–child interaction were performed during home visits. The results showed that the childrens behaviour style and how easily the children could be interpreted were factors that the caregivers used to monitor the interaction and obtain more frequent periods of successful interaction. By triangulation of instruments the caregivers were shown to be well aware of the roles children and parents had in the dyadic interaction.

Access and delivery of formal support to young children with developmental delay in Sweden

AbstractThis article provides a review and discussion of formal support in Sweden for young children up to 6 years of age with developmental delay and in need of special support. Some of these chil ...

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

Abstract 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.

Hope, Despair and Everything in Between – Parental Expectations of Educational Transition for Young Children with Intellectual Disability

The transition from preschool into school for children with disabilities is an important passage in the development of the child and in the family. Although children’s transitions from one educational practice to another is a growing field of research, there is limited knowledge of how the transitions from preschool to schools for children with intellectual disability (ID) are formed and experienced by families. Taking a theoretical stand point from Griebel and Niesel’s model of changes at the individual, relationships and contextual levels, and ecocultural theory on family life, the expectations of 8 parents of children with ID are analysed and discussed. The chapter presents results from an ongoing Swedish research project on understanding the learning journey in educational transitions of children with ID aged 6–7 years.