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  • 1.
    Augustine, Lilly
    et al.
    Jönköping University, School of Education and Communication, HLK, CHILD. Kristianstad University, Sweden.
    Lygnegård, Frida
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Social Work. Jönköping University, School of Education and Communication, HLK, CHILD. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, HHJ. SALVE (Social challenges, Actors, Living conditions, reseach VEnue).
    Adolfsson, Margareta
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Linking youths’ mental, psychosocial, and emotional functioning to ICF-CY: Lessons learned2018In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 40, no 19, p. 2293-2299Article in journal (Refereed)
    Abstract [en]

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

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

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

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

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

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

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

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

  • 2.
    Huus, Karina
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Dada, S.
    University of Pretoria, South Africa.
    Bornman, J.
    University of Pretoria, South Africa.
    Lygnegård, Frida
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Behavioural Science and Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, HHJ. SALVE (Social challenges, Actors, Living conditions, reseach VEnue).
    The awareness of primary caregivers in South Africa of the human rights of their children with intellectual disabilities2016In: Child: Care, Health and Development, ISSN 0305-1862, Vol. 42, no 6, p. 863-870Article in journal (Refereed)
    Abstract [en]

    Background

    Besides 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.

    Method

    A 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.

    Results

    The 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.

    Conclusion

    Primary caregivers in both rural and urban areas are aware of the rights of their children with disabilities, although there are significant differences between them.

  • 3.
    Huus, Karina
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Behavioural Science and Social Work. Jönköping University, School of Education and Communication, HLK, CHILD. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Bornman, J.
    Centre for Augmentative and Alternative Communication, University of Pretoria, South Africa.
    Lygnegård, Frida
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Behavioural Science and Social Work.
    Human rights of children with intellectual disabilities: comparing self-ratings and proxy ratings2015In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 41, no 6, p. 1010-1017Article in journal (Refereed)
    Abstract [en]

    Background

    A 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.

    Method

    This 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'sRightsQuestionnaire (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.

    Results

    Questions 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.

    Conclusion

    The 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.

  • 4.
    Lygnegård, Frida
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Participation in and outside school: Self-ratings by Swedish adolescents with and without impairments and long-term health conditions2018Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    This thesis concerns the short-term state of and changes in self-rated participation in domestic life, peer relations and, to some extent, school. Participants were adolescents with and without self-reported impairments and long-term health conditions. It is a thesis in disability research and a functional perspective on the participation of adolescents in everyday activities is applied. The thesis is one of several sub-studies in the Swedish research program LoRDIA (Longitudinal Research on Development in Adolescence).

    Aim: The aim was to study the relationships between individual and environmental factors and participation in a two-time point longitudinal study within the frame of the health classification system ICF-CY. The aim was also to study the impact of environmental and individual factors on self-reported participation in adolescents with and without impairments and long-term health conditions.

    Methods: The study designs in the four studies are cross-sectional (studies I and II), and prospective longitudinal (studies III & IV). A combination of person-based (such as cluster analysis in studies II and IV) and variable-based methods (such as ANOVA, multiple regressions, logistic regressions (studies I, II, III and IV)) were used.

    Results: When linking items from a questionnaire aiming to measure mental health in adolescents to codes in the International Classification of Functioning, Disability and Health, Children and Youth version, latent coding is preferable to manifest coding. The focus should be on the underlying meaning of the item and the primary aim of the scale from which the item originated should be taken into consideration. Concerning the self-rated experience of participation, it was stable over time when investigated from a two-time point longitudinal perspective. Results revealed that type of impairment cannot be considered the sole predictor of the experience of participation at home, with peers and in school. Factors in the microsystem, e.g. sibling support, and perceived communication within the family, are of greater importance for the level of both participation attendance and the perceived importance of participating in domestic life and peer relations.

    Conclusion: Everyday functioning in adolescents with self-reported neurodevelopmental impairments is partially affected by the same factors as for children without self-reported neurodevelopmental impairments. The effect of the neurodevelopmental impairment seems more evident in school and decreases in importance with age. Factors in the environment such as the experience of sibling support and communication patterns in the family must be taken into consideration when investigating influences on participation. When measuring participation both the frequency of attendance dimension as well as the perceived importance of the activity should be included as they seem to be related to partly differing influences.

  • 5.
    Lygnegård, Frida
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Patterns of participation within domestic life and peer relations - Youth’s own experiences2018Conference paper (Refereed)
  • 6.
    Lygnegård, Frida
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Almqvist, Lena
    Jönköping University, School of Education and Communication, HLK, CHILD. Mälardalen University.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Participation profiles in domestic life and peer relations as experienced by adolescents with and without impairments and long-term health conditions2019In: Developmental Neurorehabilitation, ISSN 1751-8423, E-ISSN 1751-8431, Vol. 22, no 1, p. 27-38Article in journal (Refereed)
    Abstract [en]

    PURPOSE: To investigate how individual and environmental factors relate to self-reported participation profiles in adolescents with and without impairments or long-term health conditions.

    METHODS: A person-oriented approach (hierarchical cluster analysis) was used to identify cluster groups of individuals sharing participation patterns in the outcome variables frequency perceived importance in domestic life and peer relations. Cluster groups were compared using one-way analysis of variance (ANOVA).

    RESULTS: A nine-cluster solution was chosen. All clusters included adolescents with impairment and long-term health conditions. Perceived importance of peer relations was more important than frequent attendance in domestic-life activities. Frequency of participation in dialogues and family interaction patterns seemed to affect the participation profiles more than factors related to body functions.

    CONCLUSION: Type of impairment or long-term health condition is a weaker determinant of membership in clusters depicting frequency and perceived importance in domestic life or peer relations than dialogue and family environment.

  • 7.
    Lygnegård, Frida
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Augustine, Lilly
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Department of Psychology, Faculty of Education, Kristianstad University, Kristianstad, Sweden.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD. Department of Special Education, Oslo University, Oslo, Norway.
    Kåreholt, Ingemar
    Jönköping University, School of Health and Welfare, HHJ, Institute of Gerontology. Jönköping University, School of Health and Welfare, HHJ. ARN-J (Aging Research Network - Jönköping).
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    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 Study2018In: Frontiers in Education, ISSN 2504-284X, Vol. 3, p. 1-13, article id 28Article in journal (Refereed)
    Abstract [en]

    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.

  • 8.
    Lygnegård, Frida
    et al.
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Donohue, Dana
    Centre for Augumentative and Alternative Communication, University of Pretoria, South Africa.
    Bornman, Juan
    Centre for Augumentative and Alternative Communication, University of Pretoria, South Africa.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    A Systematic review of Generic and Special Needs of Children with Disabilities Living in Poverty Settings in Low- and Middle-Income Countries2013In: Journal of Policy Practice, Vol. 12, no 4, p. 296-315Article in journal (Refereed)
    Abstract [en]

    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.

  • 9.
    Lygnegård, Frida
    et al.
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Kapetanovic, S.
    Augustine, Lilly
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Short-term longitudinal participation trajectories related to domestic life and peer relations for adolescents with and without self-reported neurodevelopmental impairmentsManuscript (preprint) (Other academic)
  • 10.
    Ramstrand, Nerrolyn
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Rehabilitation. Jönköping University, School of Health and Welfare, HHJ. Prosthetics and Orthotics.
    Lygnegård, Frida
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Rehabilitation.
    Can balance in children with cerebral palsy improve through use of an activity promoting computer game?2012In: Technology and Health Care, ISSN 0928-7329, E-ISSN 1878-7401, Vol. 20, no 6, p. 501-510Article in journal (Refereed)
    Abstract [en]

    INTRODUCTION:

    This study aimed to evaluate if use of an activity promoting computer game, used in the home (Nintendo Wii Fit; Nintendo Co Ltd, Japan), could influence balance related outcome measures in children with cerebral palsy.

    METHOD:

    Eighteen children with hemiplegic or diplegic cerebral palsy were recruited for the study. A randomised cross-over design was used with children tested at baseline, after five weeks of playing Wii Fit games and after five weeks without any intervention. Outcome measures of interest included: performance on the modified sensory organisation test, reactive balance test and rhythmic weight shift test.

    RESULTS:

    No significant difference was observed between testing occasions for any of the balance measures investigated (p > 0.05).

    CONCLUSION:

    Our results suggest that use of a Nintendo Wii balance board and Wii Fit software for a minimum of thirty minutes per day in the patient's own home, over a five week period, is not effective as a balance training tool in children with cerebral palsy.

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