| 1. |
- Augustine, Lilly, 1979-, et al.
(författare)
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Linking youths’ mental, psychosocial, and emotional functioning to ICF-CY : Lessons learned
- 2018
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Ingår i: Disability and Rehabilitation. - : Taylor & Francis. - 0963-8288 .- 1464-5165. ; 40:19, s. 2293-2299
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Tidskriftsartikel (refereegranskat)abstract
- 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 rehabilitationThe 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.
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| 2. |
- Augustine, Lilly, 1979-, et al.
(författare)
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The utility of the International Classification of Functioning construct as a statistical tool – operationalizing mental health as an indicator of adolescent participation
- 2022
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Ingår i: Disability and Rehabilitation. - : Taylor & Francis. - 0963-8288 .- 1464-5165. ; 44:16, s. 4220-4226
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Tidskriftsartikel (refereegranskat)abstract
- Background The ICF provides a common scientific language for the study of health and functioning. Adolescent mental health, operationalized as engagement in life situations, is one aspect of functioning. Engagement as mental health has a bi-directional relation with environmental factors.Aim To test the statistical utility of the International Classification of Functioning (ICF) classification in coding adolescent mental health and mental health problems.Methods Using data measuring mental health in a representative Swedish sample of 12-13-year-olds linking responses to the classification codes. The internal structure of the classification system constructs was tested using factor analysis.Results A factorial solution could be found for most chapters indicating that the ICF framework and coding system could be used; however, the variance explained was quite low. Linking worked better at code-level, rather than chapter level. Items measuring risk behavior or risk factors are loaded in separate constructs.Conclusions When coding items for statistical purposes, code-level rather than chapter level is to be preferred. Also, participation in risk behavior loads in separate factors indicating that these behaviors are separate from other types of participation.Implications for rehabilitation Considering some challenges with varying level of detail in the ICF-CY's chapters, the framework can be used to identify the content of mental health questionnaires to be used in rehabilitation. To provide more detailed information in rehabilitation addressing mental health, a code-level solution is more appropriate than a chapter level solution. Despite the use of same ICF-CY codes, negative participation, i.e., risk behavior, measures a different dimension than positive participation, is especially relevant in rehabilitation addressing mental health.
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| 3. |
- Augustine, Lilly, 1979-, et al.
(författare)
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Trajectories of participation, mental health, and mental health problems in adolescents with self-reported neurodevelopmental disorders
- 2022
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Ingår i: Disability and Rehabilitation. - : Taylor & Francis. - 0963-8288 .- 1464-5165. ; 44:9, s. 1595-1608
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: Having a neurodevelopmental disorder (NDD) increases the risk of mental health problems and lower participation. We investigated the trajectories of mental health problems and participation in adolescents with NDD and compared these with trajectories for peers without NDD. In addition, the relationship between participation, mental health (well-being), and mental health problems were investigated.MATERIALS AND METHODS: Data from a Swedish longitudinal survey study (LoRDIA) was used and adolescents with and without self-reported NDD were followed from 12/13 to 17 years, in three waves. Mental health problems were measured using the Strength and Difficulties Questionnaire, and well-being was measured with the Mental Health Continuum short form.RESULTS: Adolescents with NDD experience more mental health problems than adolescents without NDD. Hyperactivity, a key feature of NDD, remains stable, while emotional problems and psychosomatic complaints, increase over time for girls, independent of NDD. Participation is stable over time but is more related to well-being than to NDD or mental health problems.CONCLUSIONS: Gender is an important factor with girls exhibiting more problems. Mental health explains more of the variation in participation than mental health problems and NDD. Probably participation intervention can enhance mental health which may protect from mental health problems.Implications for rehabilitationMental health, i.e., emotional-, social-, and psychological well-being is more strongly related to participation and to reduced levels of mental health problems than having an NDD or not, thus assessing mental health separately from measuring NDD is important.Interventions focusing on participation may lead to higher mental health and having high mental health (flourishing) may facilitate participation.Girls with self-reported NDD seem to have a higher burden of mental health problems, especially if they also are languishing, i.e., having low mental health, therefore a strong focus on this group is needed both in research and clinical practice.Half of all adolescents are flourishing, independently of NDD or not, even if they are experiencing some symptoms of mental health problems, adolescents with NDD who are also languishing, have much higher ratings of mental health problems.
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| 4. |
- 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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| 5. |
- Fischer, E., et al.
(författare)
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Occupation as means and ends in paediatric occupational therapy : A systematic review
- 2023
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Ingår i: Scandinavian Journal of Occupational Therapy. - : Taylor & Francis. - 1103-8128 .- 1651-2014. ; 30:8, s. 1181-1198
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Forskningsöversikt (refereegranskat)abstract
- Background: There is a lack of evidence-based knowledge in paediatric occupational therapy about the effectiveness of interventions using daily activities as a treatment modality in improving children’s participation.Objective: This study aimed to evaluate the effectiveness of occupation-based and occupation-focused interventions in improving participation in everyday occupations for young children with a disability.Material and methods: A systematic review based on Joanna Briggs Institute methodology and critical appraisal tools was conducted. Six databases were searched for quantitative intervention studies aimed at improving participation in everyday occupations of young children with a disability through the use of everyday occupation.Results: The search yielded 3732 records, of which 13 studies met inclusion criteria. Ten studies met methodological quality criteria and were included in the synthesis, five randomised controlled trials and five quasi-experimental studies, involving a total of 424 children with a mean age of 6.5 years. The studies were classified into cognitive (n = 5), context-focussed (n = 2) and playgroup interventions (n = 3). Study quality ranged from low to moderate, only one study was rated high quality.Conclusions and significance: Occupation-based and occupation-focused interventions may have a positive effect on participation in everyday occupations for young children with a disability, but study design, risk of bias and insufficient reporting limit confidence in the body of evidence.
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| 6. |
- Fischer, Evelin, et al.
(författare)
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Systematic review protocol of the effectiveness of occupation-based and occupation-focused interventions used in occupational therapy to improve participation in everyday activities for young children with a disability [protocol]
- 2022
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Annan publikation (övrigt vetenskapligt/konstnärligt)abstract
- Review question / Objective: The aim of this review was to identify, appraise, evaluate and synthesise evidence of the effectiveness of interventions using occupations and/or occupational performance outcomes in improving activities of daily living and participation of young children with a disability. The PICOS framework was used to develop the review question: Population – children with a disability under the age of 10. Intervention – interventions which are both occupation-based and occupation-focused provided by an occupational therapist in groups or individually, incorporating participation in everyday occupations in the most natural context possible or focusing directly on participation in everyday occupations instead of focusing on improving underlying functions in order to better participate in everyday occupations (1)(Fisher, 2013). Control – alternative occupational therapy (OT) intervention, alternative non-OT intervention or no intervention. Outcome – improved participation in everyday occupations assessed before and after the intervention, measured by standardized assessment tools or self-report measures of occupational performance, engagement and participation. Study characteristics – Systematic Review of original studies (levels I and II, Joanna Briggs Institute) including Randomised Controlled Trials (RCTs) or quasiexperimental designs (eg. with Pre-test – post-test or historic/ retrospective control group study). Research Question: “What is the evidence for the effectiveness of occupation-based and occupationfocused interventions in improving participation in everyday occupations for young children with a disability?”
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| 7. |
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| 8. |
- 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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| 9. |
- Huus, Karina, et al.
(författare)
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Human rights of children with intellectual disabilities : comparing self-ratings and proxy ratings
- 2015
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Ingår i: Child Care Health and Development. - : Wiley. - 0305-1862 .- 1365-2214. ; 41:6, s. 1010-1017
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundA child rights-based approach to research articulates well with Article 12 of the United Nations Convention on the Rights of the Child (CRC) and highlights the importance and value of including children's own views about aspects that concern them. The aim of this study is to compare children with intellectual disability's own ratings (as self-raters) to those of their primary caregivers (as proxy raters) regarding human rights of children. The study also aims to establish whether there is an inter-rater agreement between the self-raters and proxy raters concerning Maslow's hierarchy of needs.MethodThis study is nested in a larger study examining the human rights of children with intellectual disability in South Africa. In total, 162 children with intellectual disability from 11 schools across three provinces and their primary caregivers participated by answering parts of a Children's Rights Questionnaire (CRQ) developed by the researchers based on the United Nation's CRC. We compared the answers for six questions in the questionnaire that were addressed to self-raters (children) and proxy raters (primary caregivers) in the same way.ResultsQuestions regarding basic needs, such as access to clean water or whether the child had food to eat at home, were answered similarly by self-raters and proxy raters. Larger differences were found when self-raters and proxy raters were asked about whether the child had things or friends to play with at home. Socio-economic variables seemed to affect whether self-raters and proxy raters answered similarly.ConclusionThe results underscore the importance of promoting children's rights to express themselves by considering the opinions of both the children as self-raters and their primary caregivers as proxy raters – not only the latter. The results indicate that it is especially important to include children's own voices when more complex needs are surveyed. Agreement between self- and proxy ratings could be affected by socio-economic circumstances.
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| 10. |
- Huus, Karina, et al.
(författare)
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The awareness of primary caregivers in South Africa of the human rights of their children with intellectual disabilities
- 2016
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Ingår i: Child: Care, Health and Development. - : Wiley. - 0305-1862. ; 42:6, s. 863-870
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundBesides the right to freedom, human rights can be seen as a basic requirement also for the maintenance of human dignity and the opportunity to thrive – particularly in the case of children with disabilities. It is imperative to explore primary caregivers' awareness of the human rights of their children with intellectual disabilities in view of the role they may play in either facilitating or restricting these rights. This paper explores the awareness of 219 primary caregivers of the human rights of their children with intellectual disabilities.MethodA descriptive survey design was used with a custom-designed questionnaire that employed a deductive content analysis based on the articles of the United Nations Convention on the Rights of a Child. Comparisons were drawn between the awareness of primary caregivers from urban and those from rural areas.ResultsThe majority (85.5%) of participants agreed that their child with intellectual disability had rights. Three broad kinds of right were mentioned (in descending order): provision rights, protection rights and participation rights. Participants from both urban and rural areas mentioned education (a provision right) most frequently. However, participants from urban areas were more aware of the different rights that existed than were their counterparts from rural areas.ConclusionPrimary caregivers in both rural and urban areas are aware of the rights of their children with disabilities, although there are significant differences between them.
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| 11. |
- Lygnegård, Frida, et al.
(författare)
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A Systematic review of Generic and Special Needs of Children with Disabilities Living in Poverty Settings in Low- and Middle-Income Countries
- 2013
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Ingår i: Journal of Policy Practice. - : Informa UK Limited. - 1558-8742 .- 1558-8750. ; 12:4, s. 296-315
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Tidskriftsartikel (refereegranskat)abstract
- Children with disabilities living in poverty settings in low and middle-income countries are particularly in need of special support designed to meet the needs occurring in an environment where poverty is prevalent and resources are scarce. This paper presents a systematic review of the needs of children with disabilities living in poverty settings in low and middle-income countries using Maslow’s Hierarchy of Needs as a theoretical framework. The findings demonstrate that needs at the first level of Maslow’s Hierarchy of Needs are more frequently researched in low and middle-income countries. Higher order needs should be further explored and children’s own voices should be taken into consideration when performing research, designing policies and services aiming at increased service user empowerment.
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| 12. |
- Lygnegård, Frida, et al.
(författare)
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Adolescent co-researchers identified the central role of social media for young people during the pandemic
- 2023
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Ingår i: Acta Paediatrica. - : John Wiley & Sons. - 0803-5253 .- 1651-2227. ; 112:4, s. 787-793
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Tidskriftsartikel (refereegranskat)abstract
- AIM: To test the method of engaging co-researcher adolescents in data collection and explore stated motives for their selection of social media material related to COVID-19.METHODS: Twenty-three adolescents, 13-19-years old, in Sweden participated as co-researchers collecting material from their social media related to COVID-19. Specifically, they motivated their selection of social media material in field notes. Their motives were explored using content analysis.RESULTS: Adolescent co-researchers understood and performed the task well, providing insight into the social media exchanges of adolescents during the pandemic. An overarching theme for the motivation for their selection emerged: Social media is an important tool for adolescents' communication and information exchange during COVID-19. Four categories were identified: Keeping track of the talk of the town; Recognition of personally relevant topics; Adolescents as information consumers; Social media as a means for expressing feelings, advice and existential reflections. Co-researchers reported challenges relating to the quality of pandemic-related information available to adolescents.CONCLUSION: Including young people as co-researchers on matters relevant to them was successful. This study also underlines the need to consider the role of social media in information exchange during crises and to co-produce health communication with adolescents to meet their specific needs.
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| 13. |
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| 14. |
- Lygnegård, Frida
(författare)
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Att forska tillsammans med ungdomar, hur gör man det? [bloggpost]
- 2022
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Annan publikation (populärvet., debatt m.m.)abstract
- Ingress: Att involvera den målgrupp som forskningen berör har under senare år blivit alltmer vanligt. Att målgruppen själv involveras kan innebära större träffsäkerhet i insatser som görs baserat på de resultat som forskningen kommit fram till då målgruppen själva varit involverade. När det gäller forskning som rör barn och ungdomar möjliggör detta också ur barnrättssynpunkt att de ges möjlighet att göra sin röst hörd.
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| 15. |
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| 16. |
- Lygnegård, Frida
(författare)
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Barnen som slutat gråta - konsekvenser av krig och att vara på flykt [bloggpost]
- 2022
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Annan publikation (populärvet., debatt m.m.)abstract
- Ingress: Vi får dagligen ta del av rapporter om hur människor flyr från kriget i Ukraina. Många av dessa är kvinnor och barn. SVT Nyheter rapporterade 16 mars, 2022 om att ungefär 70 000 barn om dagen har nu flytt från kriget i Ukraina. Detta motsvarar ungefär ett barn i sekunden enligt James Elder, talesperson på Förenta Nationernas barnfond, Unicef.
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| 17. |
- Lygnegård, Frida
(författare)
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Barns rätt till en trygg uppväxt fri från våld [bloggpost]
- 2022
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Annan publikation (populärvet., debatt m.m.)abstract
- Ingress: Dagligen hör vi om brott mot barn i olika former och trots att det finns många initiativ i skolor och i fritidsverksamheter och i andra för barn viktiga miljöer behöver vi fortsätta jobba för att utbilda, informera och uppmärksamma alla barns rätt till en uppväxt fri från våld.
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| 18. |
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| 19. |
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| 20. |
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| 21. |
- Lygnegård, Frida
(författare)
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En god jul för alla barn IRL och i den digitala världen [bloggpost]
- 2022
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Annan publikation (populärvet., debatt m.m.)abstract
- Ingress: Julen är här igen. Ytterligare ett år har gått och vi har handskats med fortsatta utmaningar som kanske mer än någonsin också avspeglas på våra barn och ungdomar. I och med att Internet är en så naturlig del av mycket unga barns liv, öppnas dörren till den digitala världen i tidig ålder där barn konsumerar och interagerar i filmer, chattar, spel och sociala medier.
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| 22. |
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| 23. |
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| 24. |
- Lygnegård, Frida, et al.
(författare)
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Factors associated with participation and change over time in domestic life, peer relations and school for adolescents with and without self-reported neurodevelopmental disorders : a follow-up prospective study
- 2018
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Ingår i: Frontiers in Education Conference, Conference Proceedings. - : Frontiers Media S.A.. - 1539-4565. ; 3, s. 1-13
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Tidskriftsartikel (refereegranskat)abstract
- Even though participation in everyday events is a vital part in the fulfilment of human rights, adolescents with neurodevelopmental disorders often face participation restrictions in every-day activities. Few studies have investigated the predictors for participation in different contexts, over time and in relation to the same outcome variables. The objective of the current study was therefore to investigate predictors of change in participation operationalized as frequency of attendance and perceived importance in domestic life activities, peer related activities, and school activities as experienced by adolescents with and without self-reported neurodevelopmental disorders. Method: Associations with participation, both in terms of frequency and perceived importance, in domestic life, peer relations, and the school setting were investigated using six independent variables measuring experience of time and self, sex, age, stress, support from siblings, and atmosphere in family at two-time (with approximately 2 years in between). The sample consisted of adolescents with and without self-reported neurodevelopmental disorders (n= 916). Adolescents with self-reported neurodevelopmental disorders were n=154 and adolescents without self-reported neurodevelopmental disorders was n= 762. Data was collected via self-reported questionnaires administered in schools. Results: Three key findings are presented. 1) more factors were associated with participation outcomes at time1 for adolescents without NDD than for adolescents with NDD, but this difference in the number of factors decreases with time; 2) few associations were related to time for both adolescents with and without NDD; and 3) patterns of predicting variables were different for adolescents with and without NDD. Conclusion: The findings indicate that the factors related to participation in and outside school differs between groups, when the impairment or disability is not considered as a predictor for participation. This study supports the need for using a multidimensional developmental and contextual perspective in addressing enhanced participation for adolescents with neurodevelopmental disorders.
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| 25. |
- Lygnegård, Frida, et al.
(författare)
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Factors associated with participation and change over time in domestic life, peer relations and school for adolescents with and without self-reported neurodevelopmental disorders : a follow-up prospective study
- 2018
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Ingår i: Frontiers in Education Conference, Conference Proceedings. - : Institute of Electrical and Electronics Engineers Inc.. - 1539-4565. ; 3
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Tidskriftsartikel (refereegranskat)abstract
- Even though participation in everyday events is a vital part in the fulfilment of human rights, adolescents with neurodevelopmental disorders often face participation restrictions in every-day activities. Few studies have investigated the predictors for participation in different contexts, over time and in relation to the same outcome variables. The objective of the current study was therefore to investigate predictors of change in participation operationalized as frequency of attendance and perceived importance in domestic life activities, peer related activities, and school activities as experienced by adolescents with and without self-reported neurodevelopmental disorders. Method: Associations with participation, both in terms of frequency and perceived importance, in domestic life, peer relations, and the school setting were investigated using six independent variables measuring experience of time and self, sex, age, stress, support from siblings, and atmosphere in family at two-time (with approximately 2years in between). The sample consisted of adolescents with and without self-reported neurodevelopmental disorders (n= 916). Adolescents with self-reported neurodevelopmental disorders were n=154 and adolescents without self-reported neurodevelopmental disorders was n= 762. Data was collected via self-reported questionnaires administered in schools. Results: Three key findings are presented. 1) more factors were associated with participation outcomes at time1 for adolescents without NDD than for adolescents with NDD, but this difference in the number of factors decreases with time; 2) few associations were related to time for both adolescents with and without NDD; and 3) patterns of predicting variables were different for adolescents with and without NDD. Conclusion: The findings indicate that the factors related to participation in and outside school differs between groups, when the impairment or disability is not considered as a predictor for participation. This study supports the need for using a multidimensional developmental and contextual perspective in addressing enhanced participation for adolescents with neurodevelopmental disorders.
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