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- Adair, Brooke, et al.
(author)
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Measures used to quantify participation in childhood disability and their alignment with the family of participation-related constructs : a systematic review
- 2018
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In: Developmental Medicine & Child Neurology. - : WILEY. - 0012-1622 .- 1469-8749. ; 60:11, s. 1101-1116
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Research review (peer-reviewed)abstract
- AimWe aimed to identify measures used to assess the participation of disabled children and to map the measures' content to the family of participation-related constructs (fPRC) to inform future research and practice. MethodSix databases were searched to identify measures used to assess participation in health, psychology, and education research. Included studies involved children aged 0 to 18 years with a permanent impairment or developmental disability and reported use of a quantitative measure of participation. A second search sought relevant literature about each identified measure (including published manuals) to allow a comprehensive understanding of the measure. Measurement constructs of frequently reported measures were then mapped to the fPRC. ResultsFrom an initial yield of 32 767 articles, 578 reported one or more of 118 participation measures. Of these, 51 measures were reported in more than one article (our criterion) and were therefore eligible for mapping to the fPRC. Twenty-one measures quantified aspects of participation attendance, 10 quantified aspects of involvement as discrete scales, and four quantified attendance and involvement in a manner that could not be separated. InterpretationImproved understanding of participation and its related constructs is developing rapidly; thoughtful selection of measures in research is critical to further our knowledge base.
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| 2. |
- Adair, Brooke, et al.
(author)
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The effect of interventions aimed at improving participation outcomes for children with disabilities : a systematic review
- 2015
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In: Developmental Medicine & Child Neurology. - : Wiley. - 0012-1622 .- 1469-8749. ; 57:12, s. 1093-1104
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Research review (peer-reviewed)abstract
- AimEnhancement 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.MethodNine 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.ResultsSeven 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.IntepretationFew 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.
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| 4. |
- Adolfsson, Margareta, 1950-
(author)
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Applying the ICF-CY to identify everyday life situations of children and youth with disabilities
- 2011
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Doctoral thesis (other academic/artistic)abstract
- Four studies were included in this doctoral dissertation aiming to investigatehow habilitation professionals perceive the ICF-CY in clinical work and to identify everyday life situations specific for children and youth aged 0-17 years. The ICF-CY was the conceptual framework and since the research was conducted on as well as with the ICF-CY, the use of the classification runs like a thread through all the work. The design was primarily qualitative and included descriptive and comparative content analyses. Study I was longitudinal, aiming to explore how an implementation of the ICF-CY in Swedish habilitation services was perceived. Studies II-IV were interrelated, aiming to explore children’s most common everyday life situations. Content in measures of participation, professionals’ perspectives, and external data on parents’ perspectives were linked to the ICF-CY and compared. Mixed methods design bridged the Studies III-IV. Results in Study I indicated that knowledge on the ICF-CY enhanced professionals’ awareness of families’ views of child functioning and pointed to the need for ICF-CY based assessment and intervention methods focusing on child participation in life situations. A first important issue in this respect was to identify everyday life situations. Two sets of ten everyday life situations related to the ICF-CY component Activities and Participation, chapters d3-d9, were compiled and adopted for younger and older children respectively, establishing a difference in context specificity depending on maturity and growing autonomy. Furthermore, key constructs in the ICFCY model were discussed, additional ICF-CY linking rules were presented and suggestions for revisions of the ICF linking rules and the ICF-CY were listed. As the sample of everyday life situations reflects the perspectives of adults, further research has to add the perspective of children and youth. The identified everyday life situations will be the basis for the development of code sets included in a screening tool intended for self- or proxy- report of participation from early childhood through adolescence.
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| 5. |
- Adolfsson, Margareta, 1950-, et al.
(author)
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Everyday Life Situations for Child Participation
- 2011
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In: Third ISEI Conference.
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Conference paper (peer-reviewed)abstract
- 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.
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| 6. |
- Adolfsson, Margareta, 1950-, et al.
(author)
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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).
- 2010
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In: Journal of Rehabilitation Medicine. - : Medical Journals Sweden AB. - 1650-1977 .- 1651-2081. ; 42:7, s. 670-678
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Journal article (peer-reviewed)abstract
- OBJECTIVE This study explored how professionals in inter-disciplinary 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
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| 8. |
- Adolfsson, Margareta, 1950-, et al.
(author)
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Identifying child functioning from an ICF-CY perspective : everyday life situations explored in measures of participation
- 2011
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In: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 33:13-14, s. 1230-1244
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Journal article (peer-reviewed)abstract
- 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.
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