| 1. |
- Adair, Brooke, et al.
(författare)
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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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Ingår i: Developmental Medicine & Child Neurology. - : WILEY. - 0012-1622 .- 1469-8749. ; 60:11, s. 1101-1116
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Forskningsöversikt (refereegranskat)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.
(författare)
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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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Ingår i: Developmental Medicine & Child Neurology. - : Wiley. - 0012-1622 .- 1469-8749. ; 57:12, s. 1093-1104
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Forskningsöversikt (refereegranskat)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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| 3. |
- Adolfsson, Margareta, 1950-
(författare)
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Applying the ICF-CY to identify everyday life situations of children and youth with disabilities
- 2011
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)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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| 4. |
- Arvidsson, Patrik, et al.
(författare)
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Content validity and usefulness of Picture My Participation for measuring participation in children with and without intellectual disability in South Africa and Sweden
- 2020
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Ingår i: Scandinavian Journal of Occupational Therapy. - : Informa UK Limited. - 1103-8128 .- 1651-2014. ; 27:5, s. 336-348
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Tidskriftsartikel (refereegranskat)abstract
- Background: Participation comprises attendance and involvement in everyday situations. Picture My Participation (PmP) is an instrument intended to measure participation in children with disabilities, particularly in low and middle income countries. Aim: To investigate content validity and usefulness of PmP for measuring participation in children with intellectual disability (ID) in South Africa and Sweden. Methods: A picture supported interview with 149 children, 6-18 years, with and without ID. Twenty everyday activities were provided. The three most important activities were selected by the child. Attendance was rated on all activities. Involvement was rated on the most important. Results: All activities were selected as important by at least one child with ID in both countries. There were similarities in perceived importance between the children with and without ID from South Africa. The children from South Africa with ID were the only subgroup that used all scale points for rating attendance and involvement. Conclusion: The 20 selected activities of PmP were especially relevant for children with ID in South Africa. The usefulness of the scales was higher for the children with ID in both countries. PmP is promising for assessing participation across different settings but psychometrical properties and clinical utility need further exploration.
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| 5. |
- Arvidsson, Patrik, et al.
(författare)
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Structural validity and internal consistency of Picture My Participation : A measure for children with disability
- 2021
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Ingår i: African Journal of Disability. - : OASIS. - 2226-7220 .- 2223-9170. ; 10
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Tidskriftsartikel (refereegranskat)abstract
- Background: Picture My Participation (PMP) intended to measure participation, defined as attendance and involvement in everyday situations, of children with disabilities, particularly in low- and middle-income settings.Objectives: To explore structural validity of PMP by identifying possible subcomponents in the attendance scale and examining internal consistency of the total score and each subcomponent.Method: A picture-supported interview was conducted with 182 children, 7–18 years, with and without intellectual disability (ID). Frequency of attendance in 20 activities was rated on a four-point Likert scale (never, seldom, sometimes and always).Results: An exploratory principal component analysis extracted four subcomponents: (1) organised activities, (2) social activities and taking care of others, (3) family life activities and 4) personal care and development activities. Internal consistency for the total scale (alpha = 0.85) and the first two subcomponents (alpha = 0.72 and 0.75) was acceptable. The two last subcomponents alpha values were 0.57 and 0.49.Conclusion: The four possible subcomponents of PMP can be used to provide information about possible domains in which participation and participation restrictions exist. This study provided further psychometric evidence about PMP as a measure of participation. The stability and the utility of these subcomponents needed further exploration.
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| 6. |
- Axelsson, Anna Karin, et al.
(författare)
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Strategies that facilitate participation in family activities of children and adolescents with profound intellectual and multiple disabilities: parents’ and personal assistants’ experiences
- 2014
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Ingår i: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 36:25, s. 2169-2177
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 7. |
- Danielsson, Henrik, et al.
(författare)
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A Systematic Review of Longitudinal Trajectories of Mental Health Problems in Children with Neurodevelopmental Disabilities
- 2024
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Ingår i: Journal of Developmental and Physical Disabilities. - : Springer. - 1056-263X .- 1573-3580. ; 36, s. 203-242
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Forskningsöversikt (refereegranskat)abstract
- To review the longitudinal trajectories - and the factors influencing their development - of mental health problems in children with neurodevelopmental disabilities. Systematic review methods were employed. Searches of six databases used keywords and MeSH terms related to children with neurodevelopmental disabilities, mental health problems, and longitudinal research. After the removal of duplicates, reviewers independently screened records for inclusion, extracted data (outcomes and influencing factors), and evaluated the risk of bias. Findings were tabulated and synthesized using graphs and a narrative. Searches identified 94,662 unique records, from which 49 publications were included. The median publication year was 2015. Children with attention deficit hyperactivity disorder were the most commonly included population in retrieved studies. In almost 50% of studies, trajectories of mental health problems changed by < 10% between the first and last time point. Despite multiple studies reporting longitudinal trajectories of mental health problems, greater conceptual clarity and consideration of the measures included in research is needed, along with the inclusion of a more diverse range of populations of children with neurodevelopmental disabilities.
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| 8. |
- Deramore Denver, Belinda, et al.
(författare)
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Methods for conceptualising ‘visual ability’ as a measurable construct in children with cerebral palsy
- 2017
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Ingår i: BMC Medical Research Methodology. - London : BioMed Central. - 1471-2288. ; 17:46
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Tidskriftsartikel (refereegranskat)abstract
- Background: Vision influences functioning and disability of children with cerebral palsy, so there is a growing need for psychometrically robust tools to advance assessment of children’s vision abilities in clinical practice and research. Vision is a complex construct, and in the absence of clarity about this construct it is challenging to know whether valid, reliable measures exist. This study reports a method for conceptualising ‘visual ability’ as a measurable construct. Methods: Using the items from 19 assessment tools previously identified in a systematic review, this study used a two-phase process: first, deductive content analysis linked items to the International Classification of Functioning, Disability and Health - Child and Youth version (ICF-CY), and second, vision-specific ‘Activity’-level items were explored using inductive thematic analysis. Results: The linking and content analysis identified that existing assessment tools are measuring vision across the ICF-CY domains of Body Functions, Activities and Participation, and Environmental and Personal Factors. Items specifically coded to vision at the Activity level were defined as measuring ‘how vision is used’, and these items form the basis of the conceptualisation that ‘visual ability’ is measurable as a single construct. The thematic analysis led to the identification of 3 categories containing 13 themes that reflect a child’s observable visual behaviours. Seven abilities reflect how a child uses vision: responds or reacts, initiates, maintains or sustains looking, changes or shifts looking, searches, locates or finds, and follows. Four interactions reflect the contexts in which a child uses their vision to purposefully interact: watches and visually interacts with people and faces, objects, over distance, and with hands. Finally, two themes reflect a child’s overall use of vision in daily activities: frequency of use, and efficiency of use. Conclusions: This study demonstrates an approach to exploring and explaining a complex topic utilising World Health Organization language and building on existing research. Despite the complexity of vision, the concept of ‘how vision is used’ can be clearly defined as a measurable construct at the Activity level of the ICF-CY. This study has identified observable visual behaviours that may be developed into items assessing how vision is used in daily activities.
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| 9. |
- Donlau, Marie, et al.
(författare)
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Children and youth with myelomeningoceles independence in managing clean intermittent catheterization in familiar settings
- 2011
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Ingår i: ACTA PAEDIATRICA. - : Wiley-Blackwell. - 0803-5253 .- 1651-2227. ; 100:3, s. 429-438
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Tidskriftsartikel (refereegranskat)abstract
- Aim: To examine the ability of children and youth with myelomeningocele to independently manage clean intermittent catheterization. Methods: There were 50 participants with myelomeningocele (5-18 years); 13 of them had also participated in a previous hospital-based study. Their abilities and interest in completing the toilet activity were examined at home or in school using an interview and the Canadian Occupational Performance Measure (COPM). Actual performance was observed and rated. Background variables were collected from medical records and KatAD+E tests. Results: In total, 48% were observed to perform the toilet activity independently, in comparison with 74% who self-reported independence. Univariate analyses found KatAD+E could predict who was independent. COPM failed to do so. Ability to remain focused and ambulation were predictors of independence, but age, sex and IQ were not. Multivariable analysis found time to completion to be the strongest predictor of independence. Four children were independent in their familiar environment, but not in the hospital setting, and six of 13 children maintained focus only in their familiar environment. Conclusions: Interviews were not sufficiently accurate to assess independence in the toilet activity. Instead, observations including time to completion are recommended. The execution of the toilet activity is influenced by the environmental context.
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| 10. |
- Granlund, Mats, 1954-, et al.
(författare)
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Definitions and operationalization of mental health problems, wellbeing and participation constructs in children with ndd : Distinctions and clarifications
- 2021
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Ingår i: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 18:4, s. 1-19
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Tidskriftsartikel (refereegranskat)abstract
- Children with impairments are known to experience more restricted participation than other children. It also appears that low levels of participation are related to a higher prevalence of mental health problems in children with neurodevelopmental disorders (NDD). The purpose of this conceptual paper is to describe and define the constructs mental health problems, mental health, and participation to ensure that future research investigating participation as a means to mental health in children and adolescents with NDD is founded on conceptual clarity. We first discuss the difference between two aspects of mental health problems, namely mental disorder and mental illness. This discussion serves to highlight three areas of conceptual difficulty and their consequences for understanding the mental health of children with NDD that we then consider in the article: (1) how to define mental health problems, (2) how to define and assess mental health problems and mental health, i.e., wellbeing as separate constructs, and (3) how to describe the relationship between participation and wellbeing. We then discuss the implications of our propositions for measurement and the use of participation interventions as a means to enhance mental health (defined as wellbeing). Conclusions: Mental disorders include both diagnoses related to impairments in the developmental period, i.e., NDD and diagnoses related to mental illness. These two types of mental disorders must be separated. Children with NDD, just like other people, may exhibit aspects of both mental health problems and wellbeing simultaneously. Measures of wellbeing defined as a continuum from flourishing to languishing for children with NDD need to be designed and evaluated. Wellbeing can lead to further participation and act to protect from mental health problems.
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| 11. |
- Granlund, Mats, 1954-, et al.
(författare)
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Participation as a means-implications for intervention reasoning
- 2024
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Ingår i: Frontiers in Rehabilitation Sciences. - : Frontiers Media S.A.. - 2673-6861. ; 5
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Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION: The increased focus among researchers and professionals on participation as an explicit intervention outcome has prompted a paradigm shift in both thought and practice. However, much research centers on altering participation outcomes in specific life situations and stages. This discussion paper considers "participation as a means" in pediatric rehabilitation and special education interventions, emphasizing its role in achieving lasting outcomes.METHOD: This paper uses a Venn diagram approach to consider relations between three core concepts-participation, intervention, and outcomes-and their intersection. The paper's central theme revolves around the intersection of these concepts, wherein participation serves as a means to achieve enduring participation outcomes within the realms of rehabilitation and special education. The discussion is supported by contemporary empirical work and from literature identified in two recent scoping reviews focusing on the intervention process.RESULTS: Achieving enduring participation outcomes through participation in the intervention process necessitates creating a learning experience, with children and families actively participating in every step: identifying participation issues, seeking explanations, prioritizing intervention goals, selecting methods, implementing interventions, and evaluating the process and outcomes.DISCUSSION: This structured approach supports professionals and researchers to foster the skills and capacity required for lasting participation outcomes for children with impairments.
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| 12. |
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| 13. |
- Hwang, Ai-Wen, et al.
(författare)
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Longitudinal trends of participation in relation to mental health in children with and without physical difficulties
- 2020
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Ingår i: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 17:22
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Tidskriftsartikel (refereegranskat)abstract
- Children with physical disabilities (PD) are known to have participation restrictions when in inclusive settings alongside typically developing (TD) children. The restrictions in participation over time may affect their mental health status. This study aimed to investigate the longitudinal relationship between independence in activities (capability) and frequency of attendance in activities, in relation to perceived mental health status in children with and without PD. The participants were a convenience sample of parents of 77 school children with PD and 94 TD children who completed four assessments with a one-year interval between each assessment. Parents of these children were interviewed with the Functioning Scale of the Disability Evaluation System-Child version (FUNDES-Child). Three dimensions of mental health problems-loneliness, acting upset, and acting nervous-were rated by parents with the Child Health Questionnaire (CHQ). Linear trend was tested by repeated-measure ANOVA. The results revealed different longitudinal patterns of independence and frequency of attendance over time for children with PD and TD. Frequency of attending activities may be more important than independence in performing activities for experiencing fewer mental health problems. The findings highlight the need for supporting children's actual attendance in daily activities which may benefit their later mental health.
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| 14. |
- Imms, Christine, et al.
(författare)
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Optimising leisure participation : a pilot intervention study for adolescents with physical impairments
- 2016
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Ingår i: Disability and Rehabilitation. - : TAYLOR & FRANCIS LTD. - 0963-8288 .- 1464-5165. ; 38:10, s. 963-971
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: To assess the feasibility of an intervention to improve participation in leisure activities of adolescents with physical impairments by changing aspects of the activity or environment. Methods: A pre-test/post-test pilot study of a multi-strategy intervention was used to explore the effectiveness of the strategies and to determine whether the intervention was practical to apply in a community setting. The intervention involved establishing adolescent and family focused goals, measuring and addressing environmental barriers and building activity performance skills. The Goal Attainment Scale (GAS) and the Canadian Occupational Performance Measure measured outcomes. Results: Eight participants (aged 12-19 years; five males) with physical disabilities set participation goals using a structured approach. Analysis of personal and environmental barriers and facilitators for participation guided the choice of intervention strategies to support goal attainment. The natural environment, government policies and availability of transport were identified as the most frequent barriers to participation in leisure. Support to secure appropriate devices to enable participation was commonly required. As a group, attainment of 12 of 17 GAS goals, and progress on four more goals, was demonstrated. Conclusions: The intervention model was applicable and practical to use in a community therapy setting and the majority of the participation goals set were achieved.Implications for RehabilitationThis ICF-based intervention model was applicable and practical to use in a community therapy setting.The majority of the adolescent's leisure participation goals were achieved following engagement in the multi-strategy intervention.Adolescents with sufficient communication skills (CFCS Levels I-III) benefited from a group-based intervention in addition to individualised support.
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| 15. |
- Imms, Christine, et al.
(författare)
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‘Participation’: a systematic review of language, definitions, and constructs used in intervention research with children with disabilities
- 2016
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Ingår i: Developmental Medicine & Child Neurology. - : Wiley. - 0012-1622 .- 1469-8749. ; 58:1, s. 29-38
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Forskningsöversikt (refereegranskat)abstract
- AimImproving participation of children with disabilities is a priority; however, the participation construct lacks clarity. This systematic review investigated how researchers defined ‘participation’ and the language used in participation intervention research.MethodNine health and education databases were searched for intervention studies of children with disabilities that included a participation outcome. Quantitative data were extracted using a customized form, and participation text data were extracted verbatim. Themes were derived using a thematic coding approach. These participation themes were applied to the outcome measures used in the included studies to compare participation language with the methods used to quantify participation changes.ResultsOf the 2257 articles retrieved, 25 were included in this review. Five participation themes and nine subthemes were developed. Two themes, attendance and involvement, were directly related to the participation construct. Three additional themes described related concepts: preferences, activity competence, and sense of self.InterpretationAttendance and involvement seem to describe the essence of the participation concept. The related themes may provide important avenues to enhance participation outcomes. This review highlighted the need for researchers to define the construct under investigation clearly and select measures carefully, as measurement choice is the mechanism through which the concept is operationalized in research.
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| 16. |
- Imms, Christine, et al.
(författare)
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Participation: Are we there yet...
- 2014
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Ingår i: Australian Occupational Therapy Journal. - : Wiley. - 0045-0766 .- 1440-1630. ; 61:5, s. 291-292
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)
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| 17. |
- Imms, Christine, et al.
(författare)
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Participation, both a means and an end : a conceptual analysis of processes and outcomes in childhood disability
- 2017
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Ingår i: Developmental Medicine & Child Neurology. - : Wiley-Blackwell. - 0012-1622 .- 1469-8749. ; 59:1, s. 16-25
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Forskningsöversikt (refereegranskat)abstract
- This review outlines a conceptual approach to inform research and practice aimed at supporting children whose lives are complicated by impairment and/or chronic medical conditions, and their families. ‘Participation’ in meaningful life activities should be an essential intervention goal, to meet the challenges of healthy growth and development, and to provide opportunities to help ensure that young people with impairments reach their full potential across their lifespan. Intervention activities and research can focus on participation as either an independent or dependent variable. The proposed framework and associated hypotheses are applicable to children and young people with a wide variety of conditions, and to their families. In taking a fresh ‘non-categorical’ perspective to health for children and young people, asking new questions, and exploring issues in innovative ways, we expect to learn lessons and to develop creative solutions that will ultimately benefit children with a wide variety of impairments and challenges, and their families, everywhere.
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| 18. |
- Kaelin, Vera C., et al.
(författare)
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Participation-focused strategy use among caregivers of children receiving early intervention
- 2021
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Ingår i: American Journal of Occupational Therapy. - : AOTA Press. - 0272-9490 .- 1943-7676. ; 75:1
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Tidskriftsartikel (refereegranskat)abstract
- Importance: Evidence on common types of participation-focused caregiver strategies can help occupational therapy practitioners to take an evidence-based approach to designing participation-focused practice.Objective: To identify and explore types of caregiver strategies to support young children’s participation in valued occupations in the home and community.Design: Qualitative study using a subset of data collected online with the Young Children’s Participation and Environment Measure (YC–PEM). Narrative responses about strategy use were content coded to the family of Participation-Related Constructs (fPRC) framework using a deductive analytic approach to identify relevant types of participation-focused strategies used in the home and community. Responses were further analyzed within each relevant fPRC construct using an inductive analytic approach to identify the scope of strategies used for each construct.Setting: Early intervention.Participants: Caregivers (N = 106) of young children receiving early intervention.Outcomes and Measures: Caregivers’ strategies to support their child’s home and community participation, provided by the YC–PEM.Results: Caregivers most commonly adapted the child’s environment or context to support their child’s home and community participation (45.06%). The least common focus of caregiver strategies was the child’s activity competencies (11.16%). Three or more types of caregiver strategies were identified for each participation-related construct.Conclusion and Relevance: Results indicated that caregivers used a range of strategies related to each of the participationrelated constructs to support their child’s participation in home and community occupations, most commonly targeting the environment. Occupational therapy practitioners can select from this range of strategies when planning participation-focused early intervention with families.What This Article Adds: This study yields new evidence on the scope of caregiver strategy use to support young children’s participation in home and community occupations. Occupational therapy practitioners can apply this evidence to anticipate common areas of caregiver strategy use in participation-focused practice with families in early intervention.
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| 19. |
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| 20. |
- Kilgour, Gaela, et al.
(författare)
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Participating together in CP-ACHIEVE : Experiences, opportunities and reflections from a collaborative research team of people with lived experience of cerebral palsy and health care professionals
- 2024
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Ingår i: Childhood. - : Sage Publications. - 0907-5682 .- 1461-7013.
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Tidskriftsartikel (refereegranskat)abstract
- The Australian Centre for Health, Independence, Economic participation and Value Enhanced care for adolescents and young adults with Cerebral Palsy (CP-ACHIEVE) is a Centre of Research Excellence (CRE), funded for 5-year by the National Health and Medical Research Council of Australia. The vision of CP-ACHIEVE is an Australia where people with cerebral palsy receive excellent healthcare throughout their lives and live in, and contribute to, supportive communities that welcome and enable their participation. CP-ACHIEVE began with the ethical commitment to bring together people with lived experience of cerebral palsy, researchers, and health professionals to develop and conduct research informed by, and relevant to, people with cerebral palsy and their allies. From inception, co-research and collaboration with (not 'to' or 'about') young people with cerebral palsy (10 to 30 years of age) and their families has been central to our work. In this paper, we describe the CP-ACHIEVE values, structure and strategy for this approach, and its implementation at each stage of the research process. We then provide an example of the strategy in action, using a qualitative exploration of CP-ACHIEVE's Participation Theme team's experiences of collaboration and involvement as co-researchers. Active participation in research for young people with lived experience of cerebral palsy and their families is a fundamental human right, based on their right to be active agents in decisions that affect them. In this paper we explore how our collaborative approach, and the integration of diverse views, has enhanced the relevance, quality, usefulness, and translation of our research. We also describe (i) the structural elements of our research group that have facilitated our work together, (ii) our challenges, and (iii) how the ownership of our research by people with cerebral palsy is driving future research directions and empowering involvement of people with lived experience beyond CP-ACHIEVE. We offer this knowledge and our experiences to assist other research teams in their journeys towards collaborative research alongside people with lived experience of disability.
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| 21. |
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