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  • 1.
    Adair, Brooke
    et al.
    School of Allied Health, Australian Catholic University, Fitzroy, Vic., Australia.
    Ullenhag, Anna
    Department of Women's and Children's Health, Karolinska Institute, Stockholm, Sweden.
    Keen, Deb
    Autism Centre of Excellence, Griffith University, Mt Gravatt, Qld, Australia.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Behavioural Science and Social Work. Jönköping University, School of Education and Communication, HLK, CHILD. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Imms, Christine
    School of Allied Health, Australian Catholic University, Fitzroy, Vic., Australia.
    The effect of interventions aimed at improving participation outcomes for children with disabilities: a systematic review2015In: Developmental Medicine & Child Neurology, ISSN 0012-1622, E-ISSN 1469-8749, Vol. 57, no 12, 1093-1104 p.Article, review/survey (Refereed)
    Abstract [en]

    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.

  • 2.
    Adolfsson, Margareta
    et al.
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Björck-Åkesson, Eva
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Behavioural Science and Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Pless, M
    ICF-CY based forms for use in problem-solving for children with disabilities2007In: The 10 years anniversary research conference of Nordic Network on Disability Research (NNDR, Göteborg, Sweden, 10-12th May, 2007Conference paper (Other academic)
  • 3.
    Adolfsson, Margareta
    et al.
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Björck-Åkesson, Eva
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Behavioural Science and Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Pless, M
    ICF-CY based forms for use in problem-solving for children with disabilities2007In: 7th International Scientific Conference Research in Education an Rehabilitation Sciences: Zagreb, June 2007, 2007Conference paper (Other academic)
  • 4.
    Adolfsson, Margareta
    et al.
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Behavioural Science and Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Is ICF a valid tool for structuring health information?2007In: 5th Scandinavian Conference on Health Informatics and 11th Swedish National Term Conference: Kalmar, October 2007, 2007Conference paper (Other academic)
  • 5.
    Adolfsson, Margareta
    et al.
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Björck-Åkesson, Eva
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Ibragimova, Nina
    Pless, Mia
    Exploring changes over time in habilitation professionals' perceptions and applications of the International Classification of Functioning, Disability and Health, version for children and youth (ICF-CY)2010In: Journal of Rehabilitation Medicine, ISSN 1650-1977, E-ISSN 1651-2081, Vol. 42, no 7, 670-678 p.Article in journal (Refereed)
    Abstract [en]

    Objective:This study explored how professionals in interdisciplinary teams perceived the implementation of the World Health Organization’s International Classification of Functioning, Disability and Health, version for Children and Youth (ICF-CY) in Swedish habilitation services.

    Design:Descriptive longitudinal mixed-methods design.

    Methods:Following participation in a 2-day in-service training on the ICF-CY, 113 professionals from 14 interdisciplinary teams described their perceptions of the implementation of the ICF-CY at 3 consecutive time-points: during in-service training, after 1 year, and after 2.5 years.

    Results:Implementation of the ICF-CY in daily work focused on assessment and habilitation planning and required adaptations of routines and materials. The ICF-CY was perceived as useful in supporting analyses and in communication about children’s needs. Professionals also perceived it as contributing to new perspectives on problems and a sharpened focus on participation.

    Conclusion:Professionals indicated that the ICF-CY enhanced their awareness of families’ views of child participation, which corresponded to organizational goals for habilitation services. An implementation finding was a lack of tools fitting the comprehensive ICF-CY perspective. The study points to the need for ICF-CY-based assessment and intervention methods focusing on child participation.

  • 6.
    Adolfsson, Margareta
    et al.
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Pless, Mia
    Uppsala universitet.
    Professionals' views of children's everyday life situations and the relation to participation2012In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 34, no 7, 581-592 p.Article in journal (Refereed)
    Abstract [en]

    Purpose: The aim was to determine professionals’ views of everyday life situations (ELS) of importance for children and to explore how ELS correlate with the construct ‘Participation’. This study was part of a larger work to develop a structured tool with code sets to identify child participation and support children with disabilities to describe what matters most for them in intervention planning.

    Method: The study had a concurrent mixed methods design. Information from one open-ended question and questionnaires were linked to the ICF-CY component Activities and Participation. Two concurrent data sets were compared.

    Results: Proposed ELS were distributed across ICF-CY categories from low to high level of complexity and context specificity. The correlation with participation became stronger for the later chapters of the component (d7-d9). Differences between respondents due to working field, country, and children’s ages were explored. Acts and tasks seemed most important for the youngest children whereas ELS shifted towards societal involvement for adolescents.

    Conclusion: Eleven categories related to ICF-CY chapters d3-d9 emerged as ELS. Two age groups (infants/preschoolers and adolescents) are required to develop code sets for the new tool. The results need triangulation with other concurrent studies to provide corroborating evidence and add a family perspective.

  • 7.
    Adolfsson, Margareta
    et al.
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Klang, Nina
    School of Education, Culture and Communication, Mälardalen university.
    Maxwell, Gregor
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Ståhl, Ylva
    Jönköping University, School of Health Science, HHJ. CHILD.
    Ullenhag, Anna
    Karolinska Institutet.
    Participation as the Focus of Intervention:  Cultural Diversity and Universal Characteristics2011In: / [ed] Michael Guralnick, 2011Conference paper (Other academic)
    Abstract [en]

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

  • 8.
    Adolfsson, Margareta
    et al.
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Malmqvist, Johan
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Pless, Mia
    Uppsala universitet.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Behavioural Science and Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Identifying Child Functioning from an ICF-CY Perspective: Everyday Life Situations Explored in Measures of Participation2011In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 33, no 13-14, 1230-1244 p.Article in journal (Refereed)
    Abstract [en]

    Purpose. This study was part of a larger work to develop an authentic measure consisting of code sets for self- or proxy-report of child participation. The aim was to identify common everyday life situations of children and youth based on measures of participation.

    Method. The study was descriptive in nature and involved several stages: systematic search of literature to find articles presenting measures for children and youth with disabilities, identifying measures in selected articles, linking items in included measures to the ICF-CY, analysing content in measures presented as performance and participation and identifying aggregations of ICF-CY codes across these measures.

    Results. A large number of measures for children and youth with disabilities were identified but only 12 fulfilled the inclusion criteria. A slight distinction in content and age appropriateness appeared. Measures presented as performance covered all the ICF-CY Activities and Participation chapters, whereas measures presented as participation covered five of nine chapters. Three common everyday life situations emerged from the measures: Moving around, Engagement in play and Recreation and leisure.

    Conclusion. Only a small number of life situations for children and youth emerged from items in selected measures, thus, other sources are needed to identify more everyday life situations.

  • 9.
    Adolfsson, Margareta
    et al.
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Pless, M
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Ibragimova, N
    Björck-Åkesson, Eva
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Behavioural Science and Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    WHO:s Classification of Functioning, Disability and Health in Child- and Youth Habilitation2007In: Presentation at The 5th conference on International Classification of Functioning, Disability and Health. Oslo, June 2007, 2007Conference paper (Other academic)
  • 10.
    Adolfsson, Margareta
    et al.
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Pless, Mia
    Mälardalens högskola.
    Ibragimova, Nina
    Mälardalens högskola.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Björck-Åkesson, Eva
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Användbarhet av ICF/ICF-CY inom Barn- och ungdomshabilitering2007In: / [ed] Högskolan i Jönköping och Mälardalens högskola, 2007Conference paper (Other academic)
  • 11.
    Adolfsson, Margareta
    et al.
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Pless, Mia
    Ibragimova, Nina
    Mälardalens högskola.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Behavioural Science and Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Björck-Åkesson, Eva
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Införande av ICF-CY i habiliteringsverksamhet2008In: Att använda ICF-CY: Västerås,  sept 2008, 2008Conference paper (Other academic)
  • 12.
    Adolfsson, Margareta
    et al.
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Pless, Mia
    Department of Public Health and Caring Sciences, Uppsala universitet.
    Malmqvist, Johan
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Everyday Life Situations for Child Participation2011In: / [ed] Michael Guralnick, 2011Conference paper (Refereed)
    Abstract [en]

    Child Participation is defined by the International Classification of Functioning, Disability and Health forChildren and Youth (ICF-CY) as involvement in life situations but knowledge on children´s specific everydaylife situations (EDLs) is lacking. Professionals in early intervention services need a structured tool to identifyand assess child participation in everyday life situations. It should support children with disabilities indescribing what matters most for them in intervention planning. With the long term goal to create ICF-CY codesets, EDLs were identified by a systematic literature search for measures of performance or participation andby collecting professional opinions on EDL and participation. Information was linked to the ICF-CY andtriangulated with research exploring family opinions. Most items in measures were linked to moving around,play, and recreation and leisure. The six measures of performance and six of participation differed regardingcontent and content dependent on age group.Descriptions on EDLs from 297 professionals were linked to ICF-CY codes. Frequent linkages were Self-care,such as eating and hygiene; Major life areas, such as play and education; and Relationships, but also sleep. Byrelating EDLs directly to predefined ICF-CY categories in the ICF-CY component Activities and Participation,five EDLs across categories were identified based on responses from 207 professionals. These concernedsleep, communication, dressing, family relationships and play. Some differences emerged dependent onparticipants’ culture and on age group. A triangulation between professional and family opinions concerningEDL’s revealed relatively high agreement. As a final result, a set of approximately 12-15 everyday lifesituations is expected to be identified in this study to be used for development of code sets.

  • 13.
    Adolfsson, P.
    et al.
    Department of Public Health and Caring Sciences, Disability and Habilitation, Uppsala University, Uppsala, Sweden.
    Lindstedt, H.
    Department of Public Health and Caring Sciences, Disability and Habilitation, Uppsala University, Uppsala, Sweden.
    Pettersson, I.
    School of Health and Medical Sciences, Örebro University, Örebro, Sweden.
    Hermansson, L. N.
    School of Health and Medical Sciences, Örebro University, Örebro, Sweden.
    Janeslätt, G.
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Department of Public Health and Caring Sciences, Disability and Habilitation, Uppsala University, Uppsala, Sweden.
    Perception of the influence of environmental factors in the use of electronic planning devices in adults with cognitive disabilities2016In: Disability and Rehabilitation: Assistive Technology, ISSN 1748-3107, E-ISSN 1748-3115, Vol. 11, no 6, 493-500 p.Article in journal (Refereed)
    Abstract [en]

    Background: Adults with cognitive disabilities often have difficulties in dealing with the complexity of everyday life. With cognitive assistive technology (e.g. electronic planning devices [EPDs] and individual support), they can bring order to their often chaotic life. Assumptions are that environmental factors influence with non-use of EPDs.

    Objective: To explore how adults with cognitive disabilities perceive the influence of environmental factors in the use of EPDs.

    Methods: A reference group with experience of use of EPDs assisted the researchers. Twelve adults with cognitive disabilities and experience of using EPDs participated. An interview guide was implemented covering environmental factors according to the International Classification of Functioning, Disability and Health. Qualitative content analysis was applied in the analyses.

    Results: Five categories and two themes emerged, which were integrated into a model of facilitating factors influencing the use of EPDs. Measures to prevent or eliminate negative influences of the device use are important to be taken.

    Conclusions: Professionals need more knowledge about EPDs, while users need individual adaption of the EPDs. EPDs need to be user-friendly, manageable and work in any seasons.

    Implications for Rehabilitation: The users should have access to specially trained prescribers. There is a need for development of user-friendly and manageable products to function in any climate. Knowledge is lacking on how to implement the users in all stages of the prescribing process. Prescribers should increase knowledge in the use of EPDs to influence the attitudes of the social environment.

  • 14.
    Ahlstrand, Inger
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Rehabilitation. Jönköping University, School of Health and Welfare, HHJ. ADULT.
    Vaz, Sharmila
    School of Occupational Therapy & Social Work, CHIRI, Curtin University, Perth, WA, Australia.
    Falkmer, Torbjörn
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Rehabilitation. Jönköping University, School of Health and Welfare, HHJ. CHILD. Department of Medical and Health Sciences, Linköping University, Linköping, Sweden.
    Thyberg, Ingrid
    Department of Rheumatology and Department of Clinical and Experimental Medicine, Linköping University, Linköping, Sweden.
    Björk, Mathilda
    Department of Rheumatology and Department of Social and Welfare Studies, Linköping University, Norrköping, Sweden.
    Self-efficacy and pain acceptance as mediators of the relationship between pain and performance of valued life activities in women and men with rheumatoid arthritis2017In: Clinical Rehabilitation, ISSN 0269-2155, E-ISSN 1477-0873, Vol. 31, no 6, 824-834 p.Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To study whether personal factors (self-efficacy and pain acceptance) mediate the relationship between pain and performance of valued life activities in persons with rheumatoid arthritis.

    METHODS: Persons with rheumatoid arthritis for at least four years (n = 737; 73% women) answered a questionnaire measuring self-efficacy, pain acceptance, performance of valued life activities, and self-rated pain. Relationships among these constructs were explored using univariate and multivariate analyses. Structural equation modelling was then used to examine the mediational role of personal factors on the relationship between pain and performance of valued life activities.

    RESULTS: A direct negative association between pain and performance of valued life activities was identified (Beta = .34, P < .001). This suggests that people with rheumatoid arthritis who had higher levels of pain has increased difficulties in performing valued life activities. Self-efficacy and activity engagement component of pain acceptance mediated the relationship between pain and performance of valued life activities, however the pain willingness component of pain acceptance did not influence participation in valued life activities.

    CONCLUSION: These findings highlight the importance of considering personal factors, such as pain acceptance and self-efficacy, in facilitating participation in valued life activities.

  • 15.
    Albrecht, Matthew A.
    et al.
    School of Psychology and Speech Pathology, Curtin University, Perth, WA, Australia.
    Foster, Jonathan K.
    School of Psychology and Speech Pathology, Curtin University, Perth, WA, Australia.
    Joosten, Annette
    School of Occupational Therapy & Social Work, CHIRI, Curtin University, Perth, WA, Australia.
    Falkmer, Marita
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Tang, Julia
    School of Occupational Therapy & Social Work, CHIRI, Curtin University, Perth, WA, Australia.
    Leung, Denise
    School of Occupational Therapy & Social Work, CHIRI, Curtin University, Perth, WA, Australia.
    Ordqvist, Anna
    School of Occupational Therapy & Social Work, CHIRI, Curtin University, Perth, WA, Australia.
    Falkmer, Torbjörn
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Visual search strategies during facial recognition in children with ASD2014In: Research in Autism Spectrum Disorders, ISSN 1750-9467, E-ISSN 1878-0237, Vol. 8, no 5, 559-569 p.Article in journal (Refereed)
    Abstract [en]

    Facial recognition is a complex skill necessary for successful human interpersonal and social interactions. Given that the most prevalent disorder of social interaction is autism spectrum disorder (ASD), a number of studies have investigated and found impaired facial recognition abilities in people with ASD. Further, this impairment may be critically involved in mediating the deficits in interpersonal and social interactions in people with ASD. We sought to address the question of whether face processing is impaired in children with ASD in the current study. While there were a number of differences in visual search behaviours between the 19 children with ASD and the 15 controls, this did not manifest in deficits in facial recognition accuracy. In addition, there were notable differences with respect to eye fixation behaviours and recognition accuracy in this study compared to the findings in a previous similar study conducted in adults with ASD. These differences suggest a performance enhancing developmental trajectory in facial processing in controls that may not be present in individuals with ASD.

  • 16.
    Albrecht, Matthew A.
    et al.
    School of Psychology and Speech Pathology, Curtin Health Innovation Research Institute, Curtin University, Perth, WA, Australia.
    Stuart, Geoffrey W.
    Olga Tennison Autism Research Centre, School of Psychological Science, La Trobe University, Melbourne, VIC, Australia.
    Falkmer, Marita
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Ordqvist, Anna
    Faculty of Health Sciences, Department of Medicine and Health Sciences (IMH), Rehabilitation Medicine, Linköping University and Pain and Rehabilitation Centre, UHL, County Council, Linkoping, Sweden.
    Leung, Denise
    Faculty of Health Sciences, School of Occupational Therapy and Social Work, Curtin Health Innovation Research Institute, Curtin University, Perth, WA, Australia.
    Foster, Jonathan K.
    School of Psychology and Speech Pathology, Curtin Health Innovation Research Institute, Curtin University, Perth, WA, Australia.
    Falkmer, Torbjörn
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Brief Report: Visual Acuity in Children with Autism Spectrum Disorders2014In: Journal of autism and developmental disorders, ISSN 0162-3257, E-ISSN 1573-3432, Vol. 44, no 9, 2369-2374 p.Article in journal (Refereed)
    Abstract [en]

    Recently, there has been heightened interest in suggestions of enhanced visual acuity in autism spectrum disorders (ASD) which was sparked by evidence that was later accepted to be methodologically flawed. However, a recent study that claimed children with ASD have enhanced visual acuity (Brosnan et al. in J Autism Dev Disord 42:2491–2497, 2012) repeated a critical methodological flaw by using an inappropriate viewing distance for a computerised acuity test, placing the findings in doubt. We examined visual acuity in 31 children with ASD and 33 controls using the 2 m 2000 Series Revised Early Treatment Diabetic Retinopathy Study chart placed at twice the conventional distance to better evaluate possible enhanced acuity. Children with ASD did not demonstrate superior acuity. The current findings strengthen the argument that reports of enhanced acuity in ASD are due to methodological flaws and challenges the reported association between visual acuity and systemising type behaviours.

  • 17.
    Almberg, Maria
    et al.
    Mobility Centre Gothenburg, Sweden.
    Selander, Helena
    Mobility Centre Gothenburg, Sweden.
    Falkmer, Marita
    Jönköping University, School of Education and Communication, HLK, CHILD. School of Occupational Therapy and Social Work, Faculty of Health Sciences, Curtin University, Perth, Australia.
    Vaz, Sharmila
    School of Occupational Therapy and Social Work, Faculty of Health Sciences, Curtin University, Perth, Australia.
    Ciccarelli, Marina
    School of Occupational Therapy and Social Work, Faculty of Health Sciences, Curtin University, Perth, Australia.
    Falkmer, Torbjörn
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Rehabilitation. Jönköping University, School of Health and Welfare, HHJ. CHILD. School of Occupational Therapy and Social Work, Faculty of Health Sciences, Curtin University, Perth, Australia.
    Experiences of facilitators or barriers in driving education from learner and novice drivers with ADHD or ASD and their driving instructors2017In: Developmental Neurorehabilitation, ISSN 1751-8423, E-ISSN 1751-8431, Vol. 20, no 2, 59-67 p.Article in journal (Refereed)
    Abstract [en]

    Background: Little is known about whether individuals with autism spectrum disorder (ASD) or attention deficit hyperactive disorder (ADHD) experience any specific facilitators or barriers to driving education.

    Objective: To explore the facilitators or barriers to driving education experienced by individuals with ASD or ADHD who obtained a learner’s permit, from the perspective of the learner drivers and their driving instructors.

    Methods: Data were collected from 33 participants with ASD or ADHD, and nine of their driving instructors.

    Results: Participants with ASD required twice as many driving lessons and more on-road tests than those with ADHD. Participants with ADHD repeated the written tests more than those with ASD. Driving license theory was more challenging for individuals with ADHD, whilst individuals with ASD found translating theory into practice and adjusting to “unfamiliar” driving situations to be the greatest challenges.

    Conclusion: Obtaining a driving license was associated with stressful training experience.

  • 18.
    Almquist, Ylva B.
    et al.
    Stockholms universitet, CHESS.
    Modin, Bitte
    Stockholms Universitet, CHESS.
    Augustine, Lilly
    Jönköping University, School of Health Science, HHJ, Dep. of Behavioural Science and Social Work. Jönköping University, School of Health Science, HHJ. Research Platform of Social Work. Jönköping University, School of Health Science, HHJ. CHILD. Statens folkhälsoinstitut, Östersund.
    Peer acceptance in the school class and subjective health complaints: A multilevel approach2013In: Journal of School Health, ISSN 0022-4391, E-ISSN 1746-1561, Vol. 83, no 10, 690-696 p.Article in journal (Refereed)
    Abstract [en]

    BACKGROUND

    Feeling accepted by peers is important for young people's health but few studies have examined the overall degree of acceptance in school and its health consequences. The purpose of the study was to investigate whether health complaints among Swedish students can be attributed to the acceptance climate in their school class even when the health effects of their own (individual) acceptance score have been taken into account.

    METHODS

    The data used were from the Health Behaviour in School-aged Children (HBSC) study for the years 2001 to 2002, 2005 to 2006, and 2009 to 2010, consisting of 13,902 5th-, 7th-, and 9th-grade Swedish students nested into 742 school classes. The statistical analyses were performed by means of linear regression multilevel analysis.

    RESULTS

    The results indicated that the variation in subjective health complaints could be ascribed partly to the school-class level (boys: 5.0%; girls: 13.5%). Peer acceptance at the individual level demonstrated a clear association with health: the lower the acceptance, the higher the complaint scores. For girls, but not for boys, the overall degree of peer acceptance in the school class demonstrated a contextual effect on health, net of acceptance at the student level. Interaction analyses also revealed an increasingly favorable health among poorly accepted girls as the acceptance climate in the school class declined.

    CONCLUSIONS

    A lower overall degree of peer acceptance in the school class is associated with poorer health among girls. However, girls who themselves feel poorly accepted are not as negatively affected health-wise by a poor acceptance climate, as are well-accepted girls.

  • 19. Almqvist, L
    et al.
    Eriksson, L
    Granlund, Mats
    Jönköping University, School of Health Science, HHJ, Dep. of Behavioural Science and Social Work. Jönköping University, School of Health Science, HHJ. CHILD.
    Delaktighet i skolaktiviteter: ett systemteoretiskt perspektiv2004In: Delaktighetens språk, Lund: Studentlitteratur , 2004, 137-155 p.Chapter in book (Other academic)
  • 20. Almqvist, L
    et al.
    Granlund, Mats
    Jönköping University, School of Health Science, HHJ, Dep. of Behavioural Science and Social Work. Jönköping University, School of Health Science, HHJ. CHILD.
    Participation in school environment of children and youth with disabilities: A person-oriented approach2005In: Scandinavian Journal of Psychology, ISSN 0036-5564, E-ISSN 1467-9450, Vol. 46, no 3, 305-314 p.Article in journal (Refereed)
    Abstract [en]

    This study investigated patterns of interrelated positive subject and environmental factors related to participation in school activities of pupils with different kinds of disabilities. Questionnaires concerning participation were collected from 472 pupils with disabilities and their teachers, parents and special education consultants. A person-oriented approach with the aim to identify patterns of variables related to a high degree of participation of pupils with disabilities was used. Cluster-groups were formed based on scores for individual subjects on factors identified as important for participation. Groups with a high degree of participation were characterized by high scores in autonomy and perceived interaction with peers and teachers and an internal locus of control. Type and degree of disability did not predict cluster group membership. A conclusion is that the outcome participation is better predicted by patterns of interrelated positive subject and environmental factors than by type of disability or any other single factor.

  • 21. Almqvist, L
    et al.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Behavioural Science and Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Pathways of engagement of young children with and without developmental delay2007In: Paper presented at the 2nd ISEI Conference, University of Zagreb, Croatia, June 14-16, 2007., 2007Conference paper (Other academic)
  • 22. Almqvist, Lena
    et al.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Behavioural Science and Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Jakobsson, Enar
    Barnens hälsa kräver mer än frånvaro av sjukdom2005In: Psykologtidningen, ISSN 0280-9702, no 8, 12-15 p.Article in journal (Other (popular science, discussion, etc.))
  • 23. Almqvist, Lena
    et al.
    Hellnäs, Petra
    Stefansson, Maria
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Behavioural Science and Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    I can play! Young children's perceptions of health2006In: Pediatric Rehabilitation, ISSN 1363-8491, E-ISSN 1464-5270, Vol. 9, no 3, 275-284 p.Article in journal (Refereed)
    Abstract [en]

    Health is today viewed as a multi-dimensional concept partly conceptualized independent from not being ill. The aim of this study was to gain knowledge of how young children perceive health. Interviews were conducted with 68 children (4–5 years), within their pre-school setting, with the help of a semi-structured interview guide. A multi-dimensional perspective represented by the health dimensions of the International Classification of Functioning, Disability and Health (ICF) was used in a manifest deductive content analysis. The children's statements were categorized and placed under one of the four health dimensions, body, activity, participation and environment. A latent content analysis was applied to identify underlying themes in the manifest categories. The results revealed that young children perceive health as a multi-dimensional construct, largely related to being engaged, i.e. to be able to perform wanted activities and participate in a supportive every-day context. This implies that improvements of child engagement should be emphasized in health promotion and to a greater extent be the central focus of health interventions for young children

  • 24. Anbäcken, Ove
    et al.
    Hultberg, John
    Jarhag, Sven
    Jönköping University, School of Health Science, HHJ, Dep. of Behavioural Science and Social Work. Jönköping University, School of Health Science, HHJ. CHILD.
    Självbestämmande, Medbestämmande, Inflytande: En studie om ett förändringsprojekt inom omsorgerna1988Report (Other academic)
  • 25.
    Andersson, Ann-Christine
    et al.
    Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare.
    Andersson-Gäre, Boel
    Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare. Jönköping University, School of Health and Welfare, HHJ. IMPROVE (Improvement, innovation, and leadership in health and welfare).
    Golsäter, Marie
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Melke, Anna
    Erfarenheter från lärandeseminarier: Barn som anhöriga: Reflektioner från följeforskning2016Report (Other academic)
    Abstract [sv]

    Under 2015 genomfördes nationella lärandeseminarier för att stärka implementeringen av den lag som ger barn rätt till information, råd och stöd när en förälder plötsligt avlider, är svårt sjuk eller skadad (HSL 2g §). Satsningen var ett förbättringsarbete som omfattade sex landsting som med hjälp av en projektledning träffades vid fyra tillfällen från januari till september. Två av träffarna skedde i Stockholm och två var digitala. Under våren 2015 knöts följeforskning till arbetet med frågeställningar om vilka resultat förbättringsarbetet gav och hur deltagarna upplevde arbetssättet. Syftet var att lyfta fram vad satsningen gav samt att lära inför framtida satsningar – är lärandeseminarier ett användbart arbetssätt för nationella implementeringssatsningar?

    Rapporten visar att lärandeseminarier tycks vara en användbar form. Teamen kan redovisa att de uppnått många av de mål som de föresatte sig under projekttiden. Det handlade om kartläggning av kunskapsläge och strukturer, kompetensutveckling samt utveckling av rutiner och material. Teamen uppskattade också att få delta i ett nationellt sammanhang som gav inspiration. Samtidigt framkom det önskemål om fortsatt och ännu mer handfast stöd i fortsatt implementering i klinisk verksamhet.

  • 26.
    Andersson, Ann-Christine
    et al.
    Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare.
    Golsäter, Marie
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Andersson Gäre, Boel
    Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare. Jönköping University, School of Health and Welfare, HHJ. IMPROVE (Improvement, innovation, and leadership in health and welfare). Jönköping University, School of Health and Welfare, HHJ. ARN-J (Aging Research Network - Jönköping).
    Melke, Anna
    Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare. The Göteborg Region Association of Local Authorities, Gothenburg, Sweden.
    Learning through networking in healthcare and welfare: The use of a breakthrough collaborative in the Swedish context2017In: International Journal of Healthcare Management, ISSN 2047-9700, E-ISSN 2047-9719Article in journal (Refereed)
    Abstract [en]

    Breakthrough Collaborative (BC) aims at learning through networking, mainly at micro level, and is used as a tool to improve care and welfare organizations. The aim of this study was to explore and illuminate the challenges when applying BC model at meso and macro level. In 2010, the Swedish Health and Medical Services Act stated the responsibility of healthcare professionals to consider children’s needs as relatives. This study uses an interactive collaborative research model. To support healthcare organizations in the implementation of the regulation, county councils/regions in Sweden were invited to take part in a BC during 2015. Six teams from different county councils/regions participated. Team members were interviewed several times during the project time. Data were analyzed with an explorative and descriptive qualitative content analysis. The result illuminates the challenges faced when applying BC at meso and macro level. Most challenges concern preparation, support structures and system connections. There are similarities with the challenges met at micro level when BC is used at meso and macro level. But it seems even more important to consider how the team is constituted at meso and macro level to make use of the learnings and achieve long-term impact in the home organization.

  • 27. Andén, M
    et al.
    Andén, G
    Tengström, A
    Leissner, P
    Wallin, J
    Andersson, L
    Lund, L
    Larsson, C
    Harlid, R
    Sandin, E
    Granlund, Mats
    Jönköping University, School of Health Science, HHJ, Dep. of Behavioural Science and Social Work. Jönköping University, School of Health Science, HHJ. CHILD.
    Kvalificerat stöd till personer med flerfunktionshinder2000Other (Other academic)
  • 28. Anund, A.
    et al.
    Falkmer, Torbjörn
    Jönköping University, School of Health Science, HHJ, Dep. of Rehabilitation. Jönköping University, School of Health Science, HHJ. CHILD.
    Forsman, Å.
    Gustafsson, S.
    Matstoms, Y.
    Sörensen, G.
    Turbell, T.
    Wenäll, J.
    Child safety in cars: Literature review2003Report (Other academic)
  • 29. Anund, A.
    et al.
    Kronqvist, L.
    Falkmer, Torbjörn
    Jönköping University, School of Health Science, HHJ, Dep. of Rehabilitation. Jönköping University, School of Health Science, HHJ. CHILD.
    Är kraven på utmärkning av skolskjutsfordon utmärkta?2005Report (Other academic)
  • 30.
    Anund, Anna
    et al.
    Swedish National Road and Transport Research Institute, VTI.
    Dukic, Tania
    Swedish National Road and Transport Research Institute, VTI.
    Thornthwaite, Sian
    STC Ltd., Derby, UK.
    Falkmer, Torbjörn
    Jönköping University, School of Health Science, HHJ, Dep. of Rehabilitation. Jönköping University, School of Health Science, HHJ. CHILD.
    Is European school transportation safe?: The need for a "door-to-door" perspective2011In: European Transport Research Review, ISSN 1867-0717, Vol. 3, no 2, 75-83 p.Article in journal (Refereed)
    Abstract [en]

    Purpose To identify and establish the number and aetiology behind children being killed or injured during school transport from a door-to-door perspective by using experience from Sweden and the UK. Methods Available crash data were analysed. Results In total, 361 children in Sweden during 1994–2001,i.e. 24% of the 1,515 identified children aged 6 - 16 who were injured or killed were identified in 256 school transport events. The predominant reason for being killed or injured when travelling on school transportation was when children were outside the bus (74%), either when passing the bus to cross the street, running in front of the bus (21%) or behind the bus (30%). Contrary to the general belief that children older than 12 are mature enough to handle traffic, more than 50% of the fatal injuries in Sweden affected children aged 13 –16. Similar results were found in the UK. The afternoon school journeys, pedestrians after alighting from the bus, and those in situations that deviated from their normal routine were found to be particularly vulnerable. Conclusions The travel chain perspective/or door to door perspective offers a promising approach for understanding school transport risks and for identifying effective countermeasures; including around bus stops and on the way to/from the bus stop. Data collection needs to be revised to reflect this approach.

  • 31. Anund, Anna
    et al.
    Falkmer, Torbjörn
    Jönköping University, School of Health Science, HHJ, Dep. of Rehabilitation. Jönköping University, School of Health Science, HHJ. CHILD.
    Hellsten, Helena
    Skyltning av hållplats som används vid skolskjutsning: Pilotförsök2003Report (Other academic)
  • 32. Arno, P.
    et al.
    Strypstein, E.
    Naniopoulos, A.
    Bekiaris, E.
    Nalbantis, D.
    Panou, M.
    Gemou, M.
    Falkmer, Torbjörn
    Jönköping University, School of Health Science, HHJ, Dep. of Rehabilitation. Jönköping University, School of Health Science, HHJ. CHILD.
    Gregersen, N.P.
    Hellsten, H.
    Pardo, J.
    Dols, J.
    Rothermel, S.
    Breker, S.
    Ruspa, C.
    Pilot Evaluation2003Report (Other academic)
  • 33.
    Arvidsson, Patrik
    et al.
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Centre for Research & Development, Uppsala University/Region Gävleborg, Sweden.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    The Relationship Between Intelligence Quotient and Aspects of Everyday Functioning and Participation for People Who Have Mild and Borderline Intellectual Disabilities2016In: JARID: Journal of applied research in intellectual disabilities, ISSN 1360-2322, E-ISSN 1468-3148Article in journal (Refereed)
    Abstract [en]

    Background

    This study explored the relationship between intelligence quotient (IQ) and aspects of everyday functioning/participation in individuals (age 16–40) who have a mild/borderline intellectual disability (IQ 55–85).

    Method

    Correlations were examined between IQ and (i) self-rated (n = 72) ability, participation as performance (how often an activity is performed), important participation restriction (not/seldom performing an activity perceived as important) and general well-being and (ii) proxy-rated (n = 41) ability and participation as performance.

    Results

    No significant correlations between IQ and any of the explored measures were found. However, the effect sizes of the correlations between IQ and ability were considered as small but not negligible.

    Conclusions

    The results support the notion that IQ is a poor predictor of general aspects of everyday functioning in persons with mild/borderline intellectual disability. The result indicates that self-ratings partly generate other information than proxy ratings which may be important for assessments of supportive requirements and diagnosis.

  • 34.
    Arvidsson, Patrik
    et al.
    Swedish Institute for Disability Research, Örebro University, Örebro, Sweden.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Thyberg, Ingrid
    Department of Clinical and Experimental Medicine, Faculty of Rheumatology, Linköping University, Linköping , Sweden.
    Thyberg, Mikael
    Swedish Institute for Disability Research, Örebro University, Örebro , Sweden.
    Important aspects of participation and participation restrictions in people with a mild intellectual disability2014In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 36, no 15, 1264-1272 p.Article in journal (Refereed)
    Abstract [en]

    Purpose: This study explored a possibility to assess the concepts of participation and participation restrictions in the International Classification of Functioning, Disability and Health (ICF) by combining self-ratings of the perceived importance with the actual performance of different everyday activities in people with a mild intellectual disability.

    Method: Structured interviews regarding 68 items from the ICF activity/participation domain were conducted (n  = 69). The items were ranked by perceived importance, performance and by combined measures. Furthermore, the measures were related to a single question about subjective general well-being.

    Results: Rankings of performance highlighted about the same items as “important participation”, while rankings of low performance addressed quite different items compared with “important participation restriction”. Significant correlations were found between subjective general well-being and high performance (r = 0.56), high performance/high importance (important participation) (r = 0.56), low performance (r = –0.56) and low performance/high importance (important participation restriction; r = –0.55).

    Conclusions: The results support the clinical relevance of the ICF and the studied selection of 68 items. Although performance only may sometimes be a relevant aspect, knowledge about the relationship between the perceived importance and the actual performance is essential for clinical interventions and for research aiming to understand specific needs regarding participation.

  • 35.
    Arvidsson, Patrik
    et al.
    Swedish Institute for Disability Research, Örebro University.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Thyberg, Ingrid
    Rheumatology, Department of Clinical and Experimental Medicine, Linköping University.
    Thyberg, Mikael
    Swedish Institute for Disability Research, Örebro University.
    International Classification of Functioning, Disability and Health categories explored for self-rated participation in Swedish adolescents and adults with a mild intellectual disability2012In: Journal of Rehabilitation Medicine, ISSN 1650-1977, E-ISSN 1651-2081, Vol. 44, no 7, 562-569 p.Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To explore internal consistency and correlations between perceived ability, performance and perceived importance in a preliminary selection of self-reported items representing the activity/participation component of the International Classification of Functioning, Disability and Health (ICF).

    DESIGN: Structured interview study.

    SUBJECTS: Fifty-five Swedish adolescents and adults with a mild intellectual disability.

    METHODS: Questions about perceived ability, performance and perceived importance were asked on the basis of a 3-grade Likert-scale regarding each of 68 items representing the 9 ICF domains of activity/participation.

    RESULTS: Internal consistency for perceived ability (Cronbach’s alpha for all 68 items): 0.95 (values for each domain varied between 0.57 and 0.85), for performance: 0.86 (between 0.27 and 0.66), for perceived importance: 0.84 (between 0.27 and 0.68). Seventy-two percent of the items showed correlations > 0.5 (mean = 0.59) for performance vs perceived importance, 41% > 0.5 (mean = 0.47) for perceived ability vs performance and 12% > 0.5 (mean = 0.28) for perceived ability vs perceived importance.

    CONCLUSION: Measures of performance and perceived importance may have to be based primarily on their estimated clinical relevance for describing aspects of the ICF participation concept. With a clinimetric approach, parts of the studied items and domains may be used to investigate factors related to different patterns and levels of participation, and outcomes of rehabilitation.

  • 36. Arvidsson, Patrik
    et al.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Behavioural Science and Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Thyberg, M
    Factors related to self-fated participation in adolescents and adults with mild intellectual disability: A systematic literature review2008In: JARID: Journal of applied research in intellectual disabilities, ISSN 1360-2322, E-ISSN 1468-3148, Vol. 21, no 3, 277-291 p.Article in journal (Refereed)
    Abstract [en]

    Background Self-rated participation is a clinically relevant intervention outcome for people with mild intellectual disability. The aim of this systematic review was to analyse empirical studies that explored relationships between either environmental factors or individual characteristics and aspects of participation in young adults with mild intellectual disability. Method Four databases were used, 756 abstracts examined and 24 studies were evaluated in-depth. Results Four aspects of participation were found: involvement, perceptions of self, self-determination and psychological well-being. Reported environmental factors were: social support, choice opportunity, living conditions, school, work and leisure, attitudes, physical availability and society. Reported individual characteristics were adaptive and social skills. Conclusions There is a relative lack of studies of factors influencing self-rated participation and existing studies are difficult to compare because of disparity regarding approaches, conceptual frameworks, etc. For adequate interventions, it seems important to study how profiles of participation are influenced by different patterns of environmental factors and individual characteristics.

  • 37. Arvidsson, Patrik
    et al.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Behavioural Science and Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Thyberg, M
    Factors with a positive relation to self rated participation in adolescent and adult people with mild intellectual disability: a systematic literature review2007In: Oral presentation 30 min: The international summit for an alliance on social inclusion, AAMR Montréal, 2007Conference paper (Other academic)
  • 38.
    Arvidsson, Patrik
    et al.
    Centre for Research & Development, Uppsala University/County Council of Gävleborg, Sweden.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Thyberg, Mikael
    Linköping University, Sweden.
    How are the activity and participation aspects of the ICF used? Examples from studies of people with intellectual disability2015In: NeuroRehabilitation (Reading, MA), ISSN 1053-8135, E-ISSN 1878-6448, Vol. 36, no 1, 45-49 p.Article, review/survey (Refereed)
    Abstract [en]

    INTRODUCTION: Interdisciplinary differences regarding understanding the International Classification of Functioning, Disability and Health (ICF) concepts activity/participation may hinder its unifying purpose. In the ICF model, functioning (and disability) is described as a tripartite concept: 1) Body structures/functions, 2) Activities, and 3) Participation. Activities refer to an individual perspective on disability that does not tally with the basic structure of social models.

    OBJECTIVE: To review how activity and participation are actually used in studies of intellectual disability (ID).

    CONCLUSION: Based on 16 papers, four different usages of activity/participation were found. 1) Theoretical reference to tripartite ICF concept with attempts to use it. 2) Theoretical reference to tripartite ICF concept without actual use of activities. 3) "Atheoretical" approach with implicit focus on participation. 4) Theoretical reference to bipartite concept with corresponding use of terms. The highlighted studies have in common a focus on participation. However, the usage of the term "activity" differs both within and between studies. Such terminology will probably confuse interdisciplinary communication rather than facilitating it. Also, the use of an explicit underlying theory differs, from references to a tripartite to references to a bipartite concept of disability. This paper is focused on ID, but the discussed principles regarding the ICF and interdisciplinary disability theory are applicable to other diagnostic groups within rehabilitation practices.

  • 39.
    Arzoo, Pakeeza Shaiq
    et al.
    Department of Immunology, Genetics and Pathology, Science for Life Laboratory, Uppsala University, Uppsala, Sweden.
    Klar, Joakim
    Department of Immunology, Genetics and Pathology, Science for Life Laboratory, Uppsala University, Uppsala, Sweden.
    Bergendal, Birgitta
    National Oral Disability Centre, The Institute for Postgraduate Dental Education, Jönköping, Sweden.
    Norderyd, Johanna
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Dahl, Niklas
    Department of Immunology, Genetics and Pathology, Science for Life Laboratory, Uppsala University, Uppsala, Sweden.
    WNT10A mutations account for ¼ of population-based isolated oligodontia and show phenotypic correlations2014In: American Journal of Medical Genetics. Part A, ISSN 1552-4825, E-ISSN 1552-4833, Vol. 164, no 2, 353-359 p.Article in journal (Refereed)
    Abstract [en]

    A large proportion (>50%) of patients with isolated oligodontia were recently reported with WNT10A mutations. We have analyzed a population-based cohort of 102 individuals diagnosed with non-syndromic oligodontia and a mean of 8.2 missing teeth. The cohort included 94 families and screening of WNT10A identified that 26 probands (27.7%) had at least one WNT10A variant. When we included the MSX1, PAX9, AXIN2, EDA, EDAR, and EDARADD genes, 38.3% of probands were positive for a mutation. Biallelic WNT10A mutations were strongly associated with a larger number of missing teeth (11.09) when compared to both monoallelic WNT10 mutations (6.82) and the group without mutations in WNT10A, MSX1, PAX9, AXIN2, EDA, EDAR, or EDARADD (7.77). Genotype–phenotype analysis of individuals with WNT10A mutations showed that premolars were the most common missing teeth. Furthermore, biallelic WNT10A mutations were associated with absence of maxillary and mandibular molars as well as mandibular central incisors. Maxillary central incisors were always present. Thus, our study indicates that WNT10A mutations are associated with both the type and numbers of missing teeth. Furthermore, we show that this population-based cohort of isolated oligodontia had a considerably lower frequency of mutated WNT10A alleles and a lower mean number of missing teeth when compared to patients recruited from dental specialist centers.

  • 40.
    Augustine, Lilly
    et al.
    Jönköping University, School of Health and Welfare, HHJ. SALVE (Social challenges, Actors, Living conditions, reseach VEnue). Jönköping University, School of Health and Welfare, HHJ. CHILD. Kristianstad University, Sweden.
    Lygnegård, Frida
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Behavioural Science and Social Work. Jönköping University, School of Education and Communication, HLK, CHILD. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, HHJ. SALVE (Social challenges, Actors, Living conditions, reseach VEnue).
    Adolfsson, Margareta
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Linking youths’ mental, psychosocial, and emotional functioning to ICF-CY: Lessons learned2017In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165Article in journal (Refereed)
    Abstract [en]

    Purpose: Linking ready-made questionnaires to codes within the International Classification of Functioning, Disability and Health, Children and Youth Version with the intention of using the information statistically for studying mental health problems can pose several challenges. Many of the constructs measured are latent, and therefore, difficult to describe in single codes. The aim of this study was to describe and discuss challenges encountered in this coding process.

    Materials and methods: A questionnaire from a Swedish research programme was linked to the International Classification of Functioning, Disability and Health, Children and Youth Version and the agreement was assessed.

    Results: Including the original aim of the questionnaire into the coding process was found to be very important for managing the coding of the latent constructs of the items. Items from the International Classification of Functioning, Disability and Health, Children and Youth Version chapters with narrow definitions for example mental functions, were more easily translated to meaningful concepts to code, while broadly defined chapters, such as interactions and relationships, were more difficult.

    Conclusion: This study stresses the importance of a clear, predefined coding scheme as well as the importance of not relying too heavily on common linking rules, especially in cases when it is not possible to use multiple codes for a single item.

    • Implications for rehabilitation
    • The International Classification of Functioning, Disability and Health, Children and Youth Version, is a useful tool for merging assessment data from several sources when documenting adolescents’ mental functioning in different life domains.

    • Measures of mental health are often based on latent constructs, often revealed in the description of the rationale/aim of a measure. The latent construct should be the primary focus in linking information.

    • By mapping latent constructs to the International Classification of Functioning, Disability and Health, Children and Youth Version, users of the classification can capture a broad range of areas relevant to everyday functioning in adolescents with mental health problems.

    • The subjective experience of participation, i.e., the level of subjective involvement, is not possible to code into the International Classification of Functioning, Disability and Health, Children and Youth Version. However, when linking mental health constructs to the International Classification of Functioning, Disability and Health, Children and Youth Version codes, the two dimensions of participation (the being there, and the level of involvement) need to be separated in the linking process. This can be performed by assigning codes focusing on being there as separate from items focusing on the subjective experience of involvement while being there.

  • 41.
    Axelsson, Anna Karin
    Jönköping University, School of Health Science, HHJ. CHILD.
    Children with profound intellectual and multiple disabilities and their participation in family activities2014Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Background. Families are essential parts of any community and throughout childhood one’s family serves as the central setting wherein opportunities for participation are offered. There is a lack of knowledge about participation of children with profound intellectual and multiple disabilities (PIMD) in family activities and how improved participation can be reached. Gathering such knowledge could enable an improvement in child functioning and wellbeing and also ease everyday life for families of a child with PIMD.

    Aim. The overall aim of this thesis was to explore participation seen as presence and engagement in family activities in children with PIMD and to find strategies that might facilitate this participation.

    Material and Methods. The research was cross-sectional and conducted with descriptive, explorative designs. First a quantitative, comparative design was used including questionnaire data from 60 families with a child with PIMD and 107 families with children with typical development (TD) (I, II). Following that, a qualitative, inductive design was used with data from individual interviews with parents of 11 children with PIMD and nine hired external personal assistants (III). Finally a mixed method design was conducted where collected quantitative data was combined with the qualitative data from the previous studies (IV).

    Results. It was found that children with PIMD participated less often, compared to children with TD, in a large number of family activities, however they participated more often in four physically less demanding activities. Children with PIMD also participated in a less diverse set of activities. Additionally, they overall had a lower level of engagement in the activities; however, both groups of children showed higher engagement in enjoyable, child-driven activities and lower engagement in routine activities. The motor ability of the child with PIMD was found to be the main child characteristic that affected their presence in the family activities negatively and child cognition was found to be the personal characteristic that affected their engagement in the activities. The child’s presence and engagement were influenced to a lesser extent by family socio-economic factors when compared to families with children with TD. Parents and hired external personal assistants described several strategies to be used to improve participation of the children with PIMD, such as by showing engagement in the activities oneself and by giving the child opportunities to influence the activities. The role of the hired external personal assistant, often considered as a family member for the child, was described as twofold: one supporting or reinforcing role in relation to the child and one balancing role in relation to the parents/the rest of the family, including reducing the experience of being burdened and showing sensitivity to family life and privacy.

    Conclusion. A child with PIMD affects the family’s functioning and the family’s functioning affects the child. Child and environmental factors can act as barriers that have the result that children with PIMD may experience fewer and less varied activities that can generate engaged interaction within family activities than children with TD do. Accordingly, an awareness and knowledge of facilitating strategies for improved participation in family activities is imperative. There needs to be someone in the child’s environment who sets the scene/stage and facilitates the activity so as to increase presence and engagement in proximal processes based on the child’s needs. The family, in turn, needs someone who can provide respite to obtain balance in the family system. External personal assistance includes these dual roles and is of importance in families with a child with PIMD.

  • 42.
    Axelsson, Anna Karin
    Jönköping University, School of Health Science, HHJ. CHILD.
    The role of the external personal assistant for children with profound intellectual and multiple disabilities working in the children’shomeManuscript (preprint) (Other academic)
  • 43.
    Axelsson, Anna Karin
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    The role of the external personal assistants for children with profound intellectual and multiple disabilities working in the children's home2015In: JARID: Journal of applied research in intellectual disabilities, ISSN 1360-2322, E-ISSN 1468-3148, Vol. 28, no 3, 201-211 p.Article in journal (Refereed)
    Abstract [en]

    Background Children with profound intellectual and multiple disabilities need support to function in an optimal way. However, there is a limited knowledge about the role of external personal assistants working in the children's home. Materials and Methods A mixed method study was performed including qualitative data from interviews with 11 Swedish parents and nine external personal assistants and quantitative data from questionnaires answered by 60 families. Results For the child, the assistant's role was one of reinforcing, meaning supportive and empowering, and the child needed a high level of assistance. For the family, the role was one of balancing and the external personal assistant was more often found to assist in activities away from home while parents tended to assist within home and in family unit activities. Conclusion In planning and implementation of external assistance, the child's needs as well as considerations of the whole family should be regarded.

  • 44.
    Axelsson, Anna Karin
    et al.
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Wilder, Jenny
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    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, 523-534 p.Article 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.

  • 45.
    Axelsson, Anna Karin
    et al.
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Imms, Christine
    Australian Catholic University, Melbourne.
    Wilder, Jenny
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Strategies that facilitate participation in family activities of children and adolescents with profound intellectual and multiple disabilities: parents’ and personal assistants’ experiences2014In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 36, no 25, 2169-2177 p.Article in journal (Refereed)
    Abstract [en]

    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.

  • 46.
    Axelsson, Anna Karin
    et al.
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Wilder, Jenny
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Mälardalens Högskola.
    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, 13-25 p.Article 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.

  • 47. Bedrosian, J
    et al.
    Calculator, S
    Granlund, Mats
    Jönköping University, School of Health Science, HHJ, Dep. of Behavioural Science and Social Work. Jönköping University, School of Health Science, HHJ. CHILD.
    Light, J
    Mirenda, P
    Schlosser, R
    Issues in AAC efficacy research1998In: Proceedings from the eight biennal ISAAC conference, 1998Conference paper (Other academic)
  • 48. Bekiaris, E.
    et al.
    Panou, M.
    Gemou, M.
    Nalbantis, D.
    Arno, P.
    Tavares, G.
    Falkmer, Torbjörn
    Jönköping University, School of Health Science, HHJ, Dep. of Rehabilitation. Jönköping University, School of Health Science, HHJ. CHILD.
    Foerst, K.
    Ruspa, C.
    New driver training curricula, best practice, design guidelines and recommendations to authorities.2003Report (Other academic)
  • 49.
    Bengtsson, Staffan
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Behavioural Science and Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, HHJ. SALVE (Social challenges, Actors, Living conditions, reseach VEnue).
    Out of the frame: disability and the body in the writings of Karl Marx2017In: Scandinavian Journal of Disability Research, ISSN 1501-7419, E-ISSN 1745-3011, Vol. 19, no 2, 151-160 p.Article in journal (Refereed)
    Abstract [en]

    How disability as a phenomenon is to be understood has been widely discussed within the field of disability research. Influenced by a Marxist perspective, the social model has reinforced the view that disability results from the organization of society rather than from individual premises. This article elaborates on these issues by exploring the writings of Karl Marx and his views concerning disability. The analysis pinpoints bodily normality in Marx’s reasoning and how the economic system shapes the premises for participation and roles, but also how people with disabilities were left out of the progressive call for social change. 

  • 50.
    Bergendal, Birgitta
    et al.
    Jönköping University, School of Health and Welfare, HHJ. CHILD. National Oral Disability Centre for Rare Disorders, The Institute for Postgraduate Dental Education, Jönköping, Sweden.
    Norderyd, Johanna
    Jönköping University, School of Health and Welfare, HHJ. CHILD. National Oral Disability Centre for Rare Disorders, The Institute for Postgraduate Dental Education, Jönköping, Sweden.
    Zhou, Xiaolei
    Uppsala University, Department of Immunology, Genetics and Pathology, Uppsala, Sweden.
    Klar, Joakim
    Uppsala University, Department of Immunology, Genetics and Pathology, Uppsala, Sweden.
    Dahl, Niklas
    Uppsala University, Department of Immunology, Genetics and Pathology, Uppsala, Sweden.
    Abnormal primary and permanent dentitions with ectodermal symptoms predict WNT10A deficiency2016In: BMC Medical Genetics, ISSN 1471-2350, E-ISSN 1471-2350, Vol. 17, no 1, 88Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The WNT10A protein is critical for the development of ectodermal appendages. Variants in the WNT10A gene may be associated with a spectrum of ectodermal abnormalities including extensive tooth agenesis.

    METHODS: In seven patients with severe tooth agenesis we identified anomalies in primary dentition and additional ectodermal symptoms, and assessed WNT10A mutations by genetic analysis.

    RESULTS: Investigation of primary dentition revealed peg-shaped crowns of primary mandibular incisors and three individuals had agenesis of at least two primary teeth. The permanent dentition was severely affected in all individuals with a mean of 21 missing teeth. Primary teeth were most often present in positions were succedaneous teeth were missing. Furthermore, most existing molars had taurodontism. Light, brittle or coarse hair was reported in all seven individuals, hyperhidrosis of palms and soles in six individuals and nail anomalies in two individuals. The anomalies in primary dentition preceded most of the additional ectodermal symptoms. Genetic analysis revealed that all seven individuals were homozygous or compound heterozygous for WNT10A mutations resulting in C107X, E222X and F228I.

    CONCLUSIONS: We conclude that tooth agenesis and/or peg-shaped crowns of primary mandibular incisors, severe oligodontia of permanent dentition as well as ectodermal symptoms of varying severity may be predictors of bi-allelic WNT10A mutations of importance for diagnosis, counselling and follow-up.

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