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  • 1.
    Andersson, Anna-Lena
    et al.
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics.
    Wilder, Jenny
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics.
    Swedish Classroom Communities Including Learners with Mild Intellectual Disabilities: Lower Secondary School2015In: Children and Young People in School and in Society / [ed] Sandberg Anette & Garpelin Anders, Nova Science Publishers, Inc., 2015, p. 111-133Chapter in book (Refereed)
    Abstract [en]

    According to the Salamanca declaration and framework (UNESCO, 1994) each country should strive to establish an inclusive school where all children can be together in the same school system, in regular classrooms with a customized education in community with others. Despite all children's right to a meaningful and equivalent teaching, categorizations of children with disabilities still occur and in Sweden there is a low degree of inclusion in regular school for pupils with intellectual disabilities (Education, 2012). For these reasons, it is of importance to increase knowledge about and investigate how classroom environments can be inclusive and provide a challenging and meaningful education for all. This chapter discusses inclusive education for children with mild intellectual disability (MID) and how teachers can work to enable learning for all pupils in their classroom. Examples will be given from field notes of different teaching sessions in lower secondary school in Sweden.

  • 2.
    Andersson, Anna-Lena
    et al.
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics.
    Wilder, Jenny
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics.
    Teachers’ Perspectives on the Learning Situation in School for Students with Mild Intellectual Disabilities2016In: Leading Education: The Distinct Contributions of Educational Research and Researchers, 2016Conference paper (Refereed)
  • 3.
    Andersson, Anna-Lena
    et al.
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics.
    Wilder, Jenny
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics.
    Wilder, Jenny (Editor)
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics.
    Tre föräldraberättelser om skolövergångar. Barn som har intellektuell funktionsnedsättning2017In: Barns övergångar: Förskola, förskoleklass, fritidshem, grundsärskola och grundskola / [ed] Lillvist, A & Wilder, J., Lund, 2017, 1, p. 151-167Chapter in book (Refereed)
    Abstract [sv]

    Barn som har intellektuell funktionsnedsättning kan få sin undervisning i grundskolan, men läsa enligt grundsärskolans läroplan. Hur är det att göra övergångar mellan olika skolformer och olika skolor för barn som har intellektuell funktionsnedsättning? Hur kan det se ut för dessa barn i förskola och skolan innan utredning inför mottagande i särskola, under utredning och efter utredning? Detta kapitel diskuterar just dessa frågor och presenterar tre föräldraberättelser om sina barns skoltid.

  • 4.
    Andersson, Anna-Lena
    et al.
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics.
    Wilder, Jenny
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics.
    Klang, Nina
    Magnússon, Gunnlaugur
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics.
    Lillvist, Anne
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics.
    Teachers' perspectives on the learning situation in school of students with mild intellectual disabilities2019In: Journal of Intellectual Disability Research, ISSN 0964-2633, E-ISSN 1365-2788, Vol. 63, p. 762-762Article in journal (Refereed)
  • 5.
    Axelsson, Anna Karin
    et al.
    Hälsohögskolan i Jönköping.
    Granlund, Mats
    Hälsohögskolan i Jönköping.
    Wilder, Jenny
    Mälardalen University, School of Education, Culture and Communication. Hälsohögskolan i Jönköping.
    Engagement in family activities: A quantitative, comparative study of children with profound intellectual and multiple disabilities and children with typical development2013In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 39, no 4, p. 523-534Article in journal (Refereed)
    Abstract [en]

    Background: Participation is known to be of great importance for children's development and emotional well-being as well as for their families. In the International Classification of Functioning, Disability and Health - Children and Youth version participation is defined as a person's 'involvement in a life situation'. Engagement is closely related to involvement and can be seen as expressions of involvement or degree of involvement within a situation. This study focuses on children's engagement in family activities; one group of families with a child with profound intellectual and multiple disabilities (PIMD) and one group of families with children with typical development (TD) were compared. Methods: A descriptive study using questionnaires. Analyses were mainly performed by using Mann-Whitney U-test and Spearman's rank correlation test. Results: Engagement in family activities differed in the two groups of children. The children with PIMD had a lower level of engagement in most family activities even though the activities that engaged the children to a higher or lesser extent were the same in both groups. Child engagement was found to correlate with family characteristics mostly in the children with TD and in the children with PIMD only negative correlations occurred. In the children with PIMD child engagement correlated with cognition in a high number of listed family activities and the children had a low engagement in routines in spite of these being frequently occurring activities. Conclusions: Level of engagement in family activities in the group of children with PIMD was lower compared with that in the group of children with TD. Families with a child with PIMD spend much time and effort to adapt family living patterns to the child's functioning

  • 6.
    Axelsson, Anna Karin
    et al.
    högskolan i jönköping.
    Wilder, Jenny
    Mälardalen University, School of Education, Culture and Communication. högskolan i jönköping.
    Barn med betydande funktionsnedsättningar och delaktighet i familjeaktiviteter.2012Conference paper (Refereed)
  • 7.
    Axelsson, Anna Karin
    et al.
    Jönköping Univ, Sweden.
    Wilder, Jenny
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics. Jönköping Univ, Sweden.
    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 development2014In: INTERNATIONAL JOURNAL OF DEVELOPMENTAL DISABILITIES, ISSN 2047-3869, Vol. 60, no 1, p. 13-25Article in journal (Refereed)
    Abstract [en]

    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.

  • 8.
    Björck-Åkesson, Eva
    et al.
    School of Education and Communication, Jönköping University, Jönköping, Sweden.
    Wilder, Jenny
    School of Health Sciences, Jönköping University, Jönköping, Sweden .
    Granlund, Mats
    School of Health Sciences, Jönköping University, Jönköping, Sweden .
    Pless, Mia
    Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden .
    Simeonsson, Rune
    School of Education and Communication, Jönköping University, Jönköping, Sweden.
    Adolfsson, Margareta
    School of Education and Communication, Jönköping University, Jönköping, Sweden.
    Almqvist, Lena
    Mälardalen University, School of Health, Care and Social Welfare. Mälardalens högskola.
    Klang, Nina
    Mälardalen University, School of Education, Culture and Communication.
    Lillvist, Anne
    Mälardalen University, School of Education, Culture and Communication.
    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 practice2010In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 32, no SUPPL. 1, p. 125-138Article in journal (Refereed)
    Abstract [en]

     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

  • 9.
    Boren, T.
    et al.
    Jönköping University, Jönköping, Sweden.
    Granlund, M.
    Jönköping University, Jönköping, Sweden; Oslo University, Oslo, Norway .
    Wilder, Jenny
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics.
    Axelsson, A. K.
    Jönköping University, Jönköping, Sweden.
    Sweden's LSS and Social Integration: An Exploration of the Relationship between Personal Assistant Type, Activities, and Participation for Children with PIMD2016In: Journal of Policy and Practice in Intellectual Disabilities, ISSN 1741-1122, E-ISSN 1741-1130, Vol. 13, no 1, p. 50-60Article in journal (Refereed)
    Abstract [en]

    The Swedish personal assistance system, facilitated through Swedish legislation (known as the LSS), allows children with profound intellectual and multiple disabilities (PIMD) to receive subsidized personal assistance. This assistance may be either a hired professional from outside the family or a parent paid as a personal assistant. The type of personal assistant can impact activity selection. As noted by bio-ecological systems theory, participation in "systems" beyond the household is important for a child's cognitive and social development, including the development of children with disabilities. The authors explored whether children's personal assistant type (i.e., external or parental) is related to their presence in socially integrative activities (SIAs) versus non-socially integrative activities (NSIAs). The relationship between children's activity engagement and their personal assistant type was examined via a descriptive, comparative study based on a questionnaire. Sixty families answered, providing quantitative data about personal assistance type across 56 common family activities. Children's external assistants showed a greater presence in SIAs than children's parental assistants, who showed a greater presence in NSIAs. The level of activity engagement between personal assistant type, however, had a less direct relationship. In accordance with bio-ecological systems theory, activity selection can influence the child's cognitive and social development. Ultimately, this study suggests that external assistants partake in more SIAs than parental assistants, likely as a function of providing respite for families. This respite stems from the LSS's implicit role for external personal assistants to also serve as relief for parents. In turn, by facilitating exposure to broader systems, these external assistants can play a critical role in children's social and cognitive development.

  • 10. Granlund, Mats
    et al.
    Björck-Åkesson, Eva
    Wilder, Jenny
    Mälardalen University, School of Education, Culture and Communication.
    Ylvén, Regina
    Mälardalen University, School of Health, Care and Social Welfare.
    AAC interventions for children in a family environment: – Implementing evidence in practice2008In: Augmentative and Alternative Communication: AAC, ISSN 0743-4618, E-ISSN 1477-3848, Vol. 24, no 3, p. 207-219Article in journal (Refereed)
    Abstract [en]

    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.

  • 11.
    Granlund, Mats
    et al.
    Mälardalen University, Department of Social Sciences.
    Wilder, Jenny
    Mälardalen University, School of Education, Culture and Communication.
    Studying interaction between children who do not use symbols in interaction and their parents within the family system: Methodological challenges2006In: Disability and Rehabilitation, ISSN 0963-8288, Vol. 28, no 3, p. 175-182Article in journal (Refereed)
    Abstract [en]

    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.

  • 12.
    Granlund, Mats
    et al.
    Högskolan i Jönköping.
    Wilder, Jenny
    Mälardalen University, School of Education, Culture and Communication.
    Almqvist, Lena
    Mälardalen University, School of Health, Care and Social Welfare.
    Severe, Multiple Disabilities2013In: The Oxford Handbook of Positive Psychology and Disability / [ed] Michael Wehmeyer, Oxford University Press, 2013, p. Kap. 28-Chapter in book (Refereed)
  • 13. Harty, Michal
    et al.
    Joseph, Neethie
    Wilder, Jenny
    Mälardalen University, School of Education, Culture and Communication.
    Rajaram, Priya
    Social Support and Families of Children with Disabilities: Towards Positive Family Functioning2007In: South African Journal of Occupational Therapy, Vol. 37, no 3, p. 18-21Article in journal (Refereed)
  • 14.
    Lillvist, Anne
    et al.
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics.
    Wilder, JennyStockholms universitet .
    Barns övergångar2017Collection (editor) (Other (popular science, discussion, etc.))
  • 15.
    Lillvist, Anne
    et al.
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics.
    Wilder, Jenny
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics.
    Collaboration in transition: Young children withlearning disabilities in Sweden2014Conference paper (Refereed)
  • 16.
    Lillvist, Anne
    et al.
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics.
    Wilder, Jenny
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics.
    Same Same But Different? Educational transitions of young children with intellectual disabilities2015In: Children and young people in school and society / [ed] Sandberg Anette & Garpelin Anders, Nova Science Publishers, Inc., 2015, p. 135-154Chapter in book (Refereed)
    Abstract [en]

    In previous research transitions have been described in many different ways; as a sensitive period (Rimm-Kaufman & Pianta, 2000), as critical moments (Garpelin, 2014) and rites of passage (van Gennep, 1960). Dockett (2014) describes educational transitions as the "change in the identity and agency of individuals as they engage in different educational settings and adopt different roles" (p. 189). Although no shared definitions exist, the common feature for all definitions of transition is the notion of processes of change. This chapter draws upon findings from an ongoing project investigating the transitions from preschool to compulsory school for students with intellectual disabilities (CSSID) and for young children with intellectual disabilities in Sweden. In the following sections we will first describe some key points highlighted in the transition research today, such as the meaning of positive transition. This is followed by viewing transitions from the perspective of the bioecological model and the developmental niche. The chapter ends with a discussion of the key points and challenges regarding transitions for young children with intellectual disabilities.

  • 17.
    Lillvist, Anne
    et al.
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics.
    Wilder, Jenny
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics.
    Valued and performed or not?: Teachers' ratings of transition activities for young children with learning disability2017In: European Journal of Special Needs Education, ISSN 0885-6257, E-ISSN 1469-591X, Vol. 32, no 3, p. 422-436Article in journal (Refereed)
    Abstract [en]

    Stakeholder collaboration has been identified as a facilitator for positive transition outcomes for all children, and especially for children in need of special support. However, the type and extent of stakeholder collaboration have shown to be related to teachers' view of their transition practises. Thus, this study set out to examine the transition activities reported by 253 teachers in Compulsory School for Students with Learning Disabilities in Sweden. The purpose was to study the type of transition activities performed and how important teachers regarded these activities to be. The results show that overall teachers are engaged in transition activities that can be described as mainly traditional, as they do not differ from transition activities carried out in other educational settings. The results also show that untraditional transition activities, such as home visits and joint parent meetings with preschools, are viewed as important, but rarely executed. The results are discussed from an ecological systems perspective, emphasising the interconnectedness of individuals and their environment. Focus is given to individualised transition processes and developmentally appropriate transition activities for young children with learning disability.

  • 18.
    Talman, Lena
    et al.
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Gustafsson, Christine
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Stier, Jonas
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Wilder, Jenny
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Insufficient documentation of participation: A study of contents in implementation plans for adults with profound intellectual disabilities2016In: Journal of Intellectual Disability Research, ISSN 0964-2633, E-ISSN 1365-2788, Vol. 60, no 7-8, p. 747-747Article in journal (Refereed)
  • 19.
    Talman, Lena
    et al.
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Gustafsson, Christine
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Stier, Jonas
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Wilder, Jenny
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics.
    Staffs’ documentation of participation for adults with profound intellectualdisability or profound intellectual and multiple disabilities2018In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 40, no 21, p. 2527-2537Article in journal (Refereed)
    Abstract [en]

    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.

  • 20.
    Talman, Lena
    et al.
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Wilder, Jenny
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics.
    Stier, Jonas
    Mälardalen University, School of Business, Society and Engineering. Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Gustafsson, Christine
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Participation for adults with profound intellectual disabilities: Perceptions of managers and staff2016In: Journal of Intellectual Disability Research, ISSN 0964-2633, E-ISSN 1365-2788, Vol. 60, no 7-8, p. 812-812Article in journal (Other academic)
  • 21.
    Talman, Lena
    et al.
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Wilder, Jenny
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics. Stockholm Univ, Stockholm, Sweden..
    Stier, Jonas
    Mälardalen University, School of Business, Society and Engineering. Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare. Dalarna Univ, Falun, Sweden..
    Gustafsson, Christine
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Participation in daily life for adults with profound intellectual (and multiple) disabilities: How high do they climb on Shier's ladder of participation?2019In: Journal of Intellectual Disabilities, ISSN 1744-6295, E-ISSN 1744-6309, article id UNSP 1744629519863959Article in journal (Refereed)
    Abstract [en]

    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.

  • 22.
    Talman, Lena
    et al.
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Wilder, Jenny
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics. Stockholm university, Sweden.
    Stier, Jonas
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare. Dalarna university, Sweden.
    Gustafsson, Christine
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Staff members and managers’ views of the conditions for the participation of adults with profound intellectual and multiple disabilities2019In: JARID: Journal of applied research in intellectual disabilities, ISSN 1360-2322, E-ISSN 1468-3148, Vol. 32, no 1, p. 143-151Article in journal (Refereed)
    Abstract [en]

    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.

  • 23.
    Wilder, Jenny
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics.
    Access and delivery of formal support to young children with developmental delay in Sweden2015In: Research and Practice in Intellectual and Developmental Disabilities, ISSN 2329-7018, Vol. 2, p. 136-147Article in journal (Refereed)
    Abstract [en]

    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 children may receive a diagnosis of mild intellectual disability during their school years. The nature of Swedish support services, the pathways to access the various types of support, and the delivery of formal support services have been reviewed. The utilisation of formal support, expectations in relation to responsibilities of parents or guardians, and the transition of children into the school system are also discussed. The developmental systems approach was used to frame the discussion. Access to formal support services for young children is not easy. Formal identification and formal eligibility decisions do not necessarily equate to formal service utilisation. Factors important to the provision of formal support include Swedish laws and regulations; the knowledge and attitudes of social service officers, and the guidelines within which they work; the competence of teachers; and parental knowledge and skills. Obtaining support seems heavily dependent on a child's relationships with key facilitators, and their experience and expertise.

  • 24.
    Wilder, Jenny
    Mälardalen University, Department of Social Sciences. Mälardalen University, School of Education, Culture and Communication.
    Barn med flera funktionshinder: Samspel, familjeanpassningar och sociala nätverk2004In: Programbok / Funktionshinder, vardagsliv, habilitering, 9:e forskningskonferensen i Örebro, 20-21 april 2004 / [ed] Örebro läns landsting. Habiliteringens forskningscentrum, 2004, p. 153-155Conference paper (Refereed)
  • 25.
    Wilder, Jenny
    Mälardalen University, Department of Social Sciences. Mälardalen University, School of Education, Culture and Communication.
    Barn med grove funksjonshinderinger, måleinstrument for samspill. Alternativ kommunikasjon: Ulike forutsetninger – ulike tiltak.2005In: ISAAC, 2005Conference paper (Other (popular science, discussion, etc.))
  • 26.
    Wilder, Jenny
    Mälardalen University, School of Education, Culture and Communication.
    Barnperspektiv i LSS-handläggning: En förstudie med fokus på arbetssätt och utvecklingsbehov2009Report (Other academic)
  • 27.
    Wilder, Jenny
    Mälardalen University, Department of Social Sciences. Mälardalen University, School of Education, Culture and Communication.
    Children with multiple disabilities: Family accommodation, social networks and interaction2007In: IASSID Special interest Research Group Persons With Profound and Multiple Disabilities , III Roundtable, 2007Conference paper (Refereed)
  • 28.
    Wilder, Jenny
    Mälardalen University, Department of Social Sciences. Mälardalen University, School of Education, Culture and Communication.
    Children with multiple disabilities- interaction, family accommodation and social networks.2004In: 11th Biennal conference of the international Society for Augmentative and Alternative Communication, 2004Conference paper (Refereed)
  • 29.
    Wilder, Jenny
    Mälardalen University, School of Education, Culture and Communication.
    Children with PIMD: Family accommodation, social network and interaction2010In: JARID: Journal of applied research in intellectual disabilities, ISSN 1360-2322, E-ISSN 1468-3148, Vol. 23, no 5, p. 499-499Article in journal (Refereed)
  • 30.
    Wilder, Jenny
    Mälardalen University, School of Education, Culture and Communication.
    Effekten av personlig assistans för intellektuellt funktionshindrade individers självbestämmande: En systematisk litteraturöversikt om internationell forskning2006Report (Other academic)
  • 31.
    Wilder, Jenny
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics.
    Kommunikation med barn som har funktionsnedsättning2014In: Kommunikation med barn och unga i vården / [ed] Maja Söderbäck, Liber, 2014, p. 190-200Chapter in book (Other academic)
  • 32.
    Wilder, Jenny
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics.
    Professionals’ and Parents’ Shared Learning in Blended Learning Networks related to Communication and Augmentative and Alternative Communication for People with Severe Disabilities2015Conference paper (Refereed)
  • 33.
    Wilder, Jenny
    Mälardalen University, School of Education, Culture and Communication. Stockholms universitet, Psykologiska institutionen.
    Proximal processes of children with profound multiple disabilities2008Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    In this thesis four empirical studies dealt with children with profound multiple disabilities and their parents with regard to: (a) how parents perceived interaction with their children (b) how observed child/parent interaction was linked to behavior style of the children as perceived by the parents (c) how parents of children with profound multiple disabilities perceived child/parent interaction and behavior style of their children in comparison to parents to children without disabilities matched for communicative ability and age respectively, and, (d) how social networks and family accommodations were linked to child/parent interaction and child behavior style over time for these families according to parental appraisals. The results in study I showed that child/parent interaction occurred through out the day and constituted of mutual experience and joy. There were two processes in interaction: monitoring interaction and successful interaction. Study II found hypo- and hyper dominated behaviour style of the children to influence interaction differently. The parents were found to be experts on their children in monitoring interaction to achieve more frequent periods of successful interaction. Study III found few differences in wishes about ideal interaction between parents of children with profound multiple disabilities and parents of typically developing children. Study IV showed that the children were communicative dependent on their parents; there were few complete overlaps between the children’s and the family’s social networks; and although family accommodations were child-driven, sustainability of family life evolved around other factors. There was a “contradiction” in results for the whole thesis: child/parent interaction occurred through out ordinary everyday life and constituted of mutual experience and joy versus the children’s communicative dependency and the distance found between social networks of families and children and child/parent interaction.

  • 34.
    wilder, Jenny
    et al.
    Mälardalen University, School of Education, Culture and Communication. högskolan i jönköping.
    Axelsson, Anna Karin
    högskolan i jönköping.
    Enhancing Engagement and Participation of Children with PMD in Family Activities. 2012Conference paper (Refereed)
  • 35.
    Wilder, Jenny
    et al.
    Mälardalen University, School of Education, Culture and Communication. Högskolan i Jönköping.
    Axelsson, Anna Karin
    Högskolan i Jönköping.
    Participation in Family Activities: Children with Multiple Disabilities2011Conference paper (Refereed)
  • 36.
    Wilder, Jenny
    et al.
    Mälardalen University, Department of Social Sciences.
    Axelsson, C.
    Mälardalen University.
    Granlund, Mats
    Mälardalen University, Department of Social Sciences.
    Parent-child interaction: A comparison of parents’ perceptions in three groups2004In: Disability and Rehabilitation, ISSN 0963-8288, Vol. 26, no 21-22, p. 1313-1322Article in journal (Refereed)
    Abstract [en]

    Purpose: To evaluate a children's version of the ICF that takes children's 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 children's 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.

  • 37.
    Wilder, Jenny
    et al.
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics.
    Granlund, Anna
    Mälardalen University, School of Innovation, Design and Engineering, Innovation and Product Realisation. Mälardalen University, School of Business, Society and Engineering, Industrial Economics and Organisation.
    Children with PIMD: family accommodation, social networks and interaction2010In: JARID: Journal of applied research in intellectual disabilities, ISSN 1360-2322, E-ISSN 1468-3148, Vol. 23, no 5, p. 499-499Article in journal (Other academic)
  • 38.
    Wilder, Jenny
    et al.
    Mälardalen University, School of Education, Culture and Communication.
    Granlund, Mats
    Mälardalen University, School of Education, Culture and Communication. ALA Research Foundation, Stockholm, Sweden.
    Behaviour style and interaction between seven children with multiple disabilities and their caregivers2003In: Child: Care, Health and Development,, ISSN 0305-1862, Vol. 29, no 6, p. 559-567Article in journal (Refereed)
    Abstract [en]

    Introduction Recent studies show that the existing interaction patterns of children with multiple disabilities should be taken into consideration when planning communication interventions. For children with disabilities, it is especially important that the partner in interaction is sensitive and well aware of the importance of a qualitatively successful interaction. Wilder (unpublished report) found that the behaviour style of 30 children with multiple disabilities was more related to the caregiver-perceived interaction than the communicative skills and functional abilities of the children. This study inductively explored the caregivers' perceptions of interaction within seven caregiver-child dyads. The research questions were: How do the caregivers perceive the interaction? How do the caregivers perceive the children's behaviour style to be related to the interaction with the caregivers? Method The children were selected individually from the participants in Wilder (unpublished report) depending upon the responses the caregivers had given about the children's self-regulation and reactivity in the Carolina Record of Individual Behaviour questionnaire. The study was undertaken by means of home visits where the caregivers participated in an interview asking about their strategies for interaction, how they perceived the roles of the children and their own roles in interaction, the caregivers' opinion of what an interaction constituted of and the caregivers' aims and aspiration for interaction. The data analysis was performed by meaning concentration and categorization through a pendulum between the parts and the entirety of the interviews. In this way, hermeneutics and thematic analysis were both being practised. Results The results of the interviews are presented as a model with categorizations as a network. The categorizations reflect the system of themes that permeate how the caregivers perceived interaction in the dyad. The themes are: sharing of experience, successful interaction, role of the child, role of the caregiver, interaction methods, obstacles and facilitators and aims and aspirations. Discussion The caregivers perceived their own role in interaction to be of a sensitive leading kind. The caregivers lead the interaction by using their knowledge about the children's usual way of interacting, the children's behaviour styles, functional abilities, the children's current mood and situation as well as the whole context. They monitored the interaction such that, throughout an interaction sequence, the caregivers always tried to optimize the interaction between the parties in the dyad. The behaviour style was a background factor that the caregivers had knowledge of and scanned in their everyday turn taking. Although there were differences in the children's behaviour styles, the caregivers discussed the same themes in the interviews. The behaviour style became a facilitator for the whole interaction, forced the interaction in certain directions and made the interaction more complete with turn taking of different kinds from both parties. The findings show that it is imperative to see caregivers as experts on their children and to make them assertive in this in relation to professionals. Furthermore, as a successful interaction can boost the development of children, it is essential to direct interventions to the everyday interaction in caregiver-child dyads.

  • 39.
    Wilder, Jenny
    et al.
    Mälardalen University, School of Education, Culture and Communication.
    Granlund, Mats
    Mälardalen University, School of Education, Culture and Communication.
    Interaction: Proximal processes of children with PIMD2010In: JARID: Journal of applied research in intellectual disabilities, ISSN 1360-2322, E-ISSN 1468-3148, Vol. 23, no 5, p. 498-498Article in journal (Refereed)
  • 40.
    Wilder, Jenny
    et al.
    Mälardalen University, School of Education, Culture and Communication.
    Granlund, Mats
    Högskolan i Jönköping.
    Personer med flerfunktionshinder2011In: Nya Omsorgsboken / [ed] Lena Söderman & Sivert Antonson, Malmö: Liber, 2011, 5, p. 29-37Chapter in book (Other academic)
  • 41.
    Wilder, Jenny
    et al.
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics.
    Granlund, Mats
    Jönköping University, Jönköping, Sweden .
    Stability and Change in Sustainability of Daily Routines and Social Networks in Families of Children with Profound Intellectual and Multiple Disabilities2015In: JARID: Journal of applied research in intellectual disabilities, ISSN 1360-2322, E-ISSN 1468-3148, Vol. 28, no 2, p. 133-144Article in journal (Refereed)
    Abstract [en]

    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.

  • 42.
    Wilder, Jenny
    et al.
    Mälardalen University, School of Education, Culture and Communication.
    Granlund, Mats
    Högskolan i Jönköping.
    Björck-Åkesson, Eva
    Högskolan i Jönköping.
    Cooperación entre profesionales y familias de niños con pluridiscapacidad [Cooperation between professionals and families of children with multiple disabilities]2012In: Pluridiscapacidad y contextos de intervención [Multiple disabilities and contexts for interventions] / [ed] E. Soro-Camats, C. Basil, y C. Rosell, Barcelona: Barcelona University (Institute for Science of Education). Digital Edition , 2012, p. 149-162Chapter in book (Refereed)
  • 43.
    Wilder, Jenny
    et al.
    Stockholms universitet .
    Lillvist, Anne
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics.
    Collaboration in Transitions from preschool: Young children with Intellectual Disabilities2017In: Pedagogies of Educational Transitions: European and Antipodean Research / [ed] Nadine Ballam, Bob Perry, Anders Garpelin, Springer, 2017, p. 59-74Chapter in book (Refereed)
  • 44.
    Wilder, Jenny
    et al.
    Stockholms Universitet .
    Lillvist, Anne
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics.
    Hope, despair and everything in between: Parental expectations of Educational Transitions for young children with intellectual disability2017In: Families and transition to School / [ed] Sue Dockett, Wilfred Griebel, Bob Perry, Springer, 2017, p. 51-66Chapter in book (Refereed)
  • 45.
    Wilder, Jenny
    et al.
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics.
    Magnusson, L.
    Linnaeus University, Kalmar, Sweden .
    Hanson, E.
    Linnaeus University, Kalmar, Sweden; University of Sheffield, Sheffield, United Kingdom.
    Professionals’ and parents’ shared learning in blended learning networks related to communication and augmentative and alternative communication for people with severe disabilities2015In: European Journal of Special Needs Education, ISSN 0885-6257, E-ISSN 1469-591X, Vol. 30, no 3, p. 367-383Article in journal (Refereed)
    Abstract [en]

    People with severe disabilities (SD) communicate in complex ways, and their teachers, parents and other involved professionals find it difficult to gain knowledge and share their experiences regarding the person with SD’s communication methods. The purpose of this study is to contribute to our understanding of how parents and professionals share learning about communication and augmentative and alternative communication (AAC) for people with SD by participating in blended learning networks (BLNs). Thirty-six parents and professionals participated in online web-based BLNs according to a prepared format; four groups were formed, and all of the groups participated in four discussion sessions and an evaluation session. Detailed minutes from the 16 BLN sessions, an evaluation session and course evaluation data were thematically analysed. The theoretical frameworks were different perspectives on disability within communication research and special education research, and theories about shared learning in networks. The analyses revealed themes that focused on communication partners’ knowledge, attitudes and strategies regarding communicating with people with SD; the importance and power of using multimodal AAC; and the universality, user-friendliness and empowering aspects of iPads and apps. The findings suggest that participants perceive communication and AAC with people with SD from relational, dialogical and interactional perspectives, whereas the categorical perspective was less pronounced. In accordance with other professional competence research, the use of online web-based BLNs with mixed groups that was described in this paper yielded positive evaluations from the participants. The opportunity for meeting others involved in caring for people with SD, the actual blended groups and the sharing of technology and AAC experiences in particular were highlighted.

  • 46.
    Wilder, Jenny
    et al.
    Mälardalen University, Department of Social Sciences. Mälardalen University, School of Education, Culture and Communication.
    Ylvén, Regina
    Mälardalen University, Department of Social Sciences.
    Legislation vs everyday life for families of children with disabilities2004In: Colloque international: Conciliation Famille Handicap: Strasbourg, France, January, 2004Conference paper (Refereed)
  • 47.
    Ylvén, Regina
    et al.
    Mälardalen University, School of Health, Care and Social Welfare.
    Wilder, Jenny
    Mälardalen University, School of Education, Culture and Communication.
    Samverkan med barn och familjer2009In: Med sikte på förskolan: Barn i behov av stöd / [ed] Sandberg, Anette, Lund: Studentlitteratur, 2009, 1, p. 239-258Chapter in book (Other academic)
  • 48.
    Ylvén, Regina
    et al.
    Mälardalen University, School of Health, Care and Social Welfare. Karolinska Institutet.
    Wilder, Jenny
    Mälardalen University, School of Education, Culture and Communication.
    Persson, Carina
    Linnéuniversitetet.
    Family leisure activities in everyday life for families of children with profound intellectual and multiple disabilitiesManuscript (preprint) (Other academic)
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