| 1. |
- 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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| 3. |
- 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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| 4. |
- Arvidsson, Patrik, et al.
(author)
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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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In: Scandinavian Journal of Occupational Therapy. - : Informa UK Limited. - 1103-8128 .- 1651-2014. ; 27:5, s. 336-348
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Journal article (peer-reviewed)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.
(author)
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Structural validity and internal consistency of Picture My Participation : A measure for children with disability
- 2021
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In: African Journal of Disability. - : OASIS. - 2226-7220 .- 2223-9170. ; 10
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Journal article (peer-reviewed)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.
(author)
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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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In: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 36:25, s. 2169-2177
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Journal article (peer-reviewed)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.
(author)
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A Systematic Review of Longitudinal Trajectories of Mental Health Problems in Children with Neurodevelopmental Disabilities
- 2024
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In: Journal of Developmental and Physical Disabilities. - : Springer. - 1056-263X .- 1573-3580. ; 36, s. 203-242
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Research review (peer-reviewed)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.
(author)
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Methods for conceptualising ‘visual ability’ as a measurable construct in children with cerebral palsy
- 2017
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In: BMC Medical Research Methodology. - London : BioMed Central. - 1471-2288. ; 17:46
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Journal article (peer-reviewed)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.
(author)
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Children and youth with myelomeningoceles independence in managing clean intermittent catheterization in familiar settings
- 2011
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In: ACTA PAEDIATRICA. - : Wiley-Blackwell. - 0803-5253 .- 1651-2227. ; 100:3, s. 429-438
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Journal article (peer-reviewed)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.
(author)
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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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In: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 18:4, s. 1-19
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Journal article (peer-reviewed)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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