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  • 1. Anderzén Carlsson, Agneta
    et al.
    Wahlqvist, Moa
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. 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.
    Health and family climate in families where one parent has deafblindness2019Conference paper (Refereed)
  • 2. Anderzén Carlsson, Agneta
    et al.
    Wahlqvist, Moa
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    The experience of family life when one parent has deafblindness - From the perspective of the partner2019Conference paper (Refereed)
  • 3. Anderzén Carlsson, Agneta
    et al.
    Wahlqvist, Moa
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    The lived experience of family life when one parent has deafblindness - from the perspective of the partner2019Conference paper (Refereed)
  • 4.
    Arvidsson, Patrik
    et al.
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Centre for Research and Development, Uppsala University/Region Gävleborg, Gävle, Sweden.
    Dada, Shakila
    Centre for Augmentative and Alternative Communication, University of Pretoria, Pretoria, South Africa.
    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. Jönköping University, School of Health and Welfare, HHJ. SALVE (Social challenges, Actors, Living conditions, reseach VEnue).
    Imms, Christine
    Centre for Disability and Development Research, Australian Catholic University, Melbourne, Australia.
    Bornman, Juan
    Centre for Augmentative and Alternative Communication, University of Pretoria, Pretoria, South Africa.
    Elliott, Catherine
    School of Occupational Therapy, Speech pathology and Social Work, Curtin University, Perth, Australia.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Content validity and usefulness of Picture My Participation for measuring participation in children with and without intellectual disability in South Africa and Sweden2020In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 27, no 5, p. 336-348Article in journal (Refereed)
    Abstract [en]

    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.

  • 5.
    Arvidsson, Patrik
    et al.
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Centre for Research & Development, Uppsala University, Gävleborg, Sweden.
    Dada, Shakila
    Centre for Augmentative and Alternative Communication, Faculty of Humanities, University of Pretoria, Pretoria, South Africa.
    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.
    Imms, Christine
    Department of Paediatrics, Faculty of Medical, Dental and Health Sciences, The University of Melbourne, Melbourne, Australia.
    Shi, Lin Jun
    Jönköping University, School of Health and Welfare, HHJ. CHILD. School of Nursing, Tianjin Medical University, Heping District, China.
    Kang, Lin Ju
    Graduate Institute of Early Intervention, Chang Gung University, Tao-Yuan, Taiwan.
    Hwang, Ai-Wen
    Graduate Institute of Early Intervention, Chang Gung University, Tao-Yuan, Taiwan.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Structural validity and internal consistency of Picture My Participation: A measure for children with disability2021In: African Journal of Disability, ISSN 2226-7220, Vol. 10, article id a763Article in journal (Refereed)
    Abstract [en]

    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.

  • 6.
    Balton, Sadna
    et al.
    Centre for Augmentative and Alternative Communication, University of Pretoria, Pretoria, South Africa.
    Arvidsson, Patrik
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Centre for Research & Development, Uppsala University/Region Gävleborg, Gävle, Sweden.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Dept. of Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD. Centre for Research & Development, Uppsala University/Region Gävleborg, Gävle, Sweden.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Dept. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD. Centre for Research & Development, Uppsala University/Region Gävleborg, Gävle, Sweden.
    Dada, Shakila
    Centre for Augmentative and Alternative Communication, University of Pretoria, Pretoria, South Africa.
    Test-retest reliability of Picture My Participation in children with intellectual disability in South Africa2022In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 29, no 4, p. 315-324Article in journal (Refereed)
    Abstract [en]

    Background

    Picture My Participation (PmP) is a promising instrument for measuring the participation in everyday situations of children with intellectual disability (ID), particularly in low- and middle-income countries.

    Aim

    To explore test-retest reliability of PmP by comparing two repeated measurements of children with ID in an urban context in South Africa.

    Methods

    A picture-supported interview with 31 children with ID, aged 7-17 years, was conducted twice, two weeks apart. The children rated their participation, operationalised as attendance and involvement, in 20 everyday activities. Analyses were completed for total scores, for the four subcomponents and at item level.

    Results

    Test-retest agreement at an item level for both attendance and involvement showed slight/fair agreement for most activities (Kappa = 0.01-0.40), and moderate agreement for some activities (Kappa = 0.41?0.60). Moderate agreement was shown for the total scale and at component level (ICC = 0.5?0.75), except for (firstly) attendance of and involvement in 'Family Activities' (ICC = 0.26 for attendance, 0.33 for involvement), and (secondly) involvement in 'Personal Activities' (ICC = 0.33).

    Conclusion

    The result indicates that PmP can reliably be used at component level and as a screening tool for intervention planning to identify participation and participation restrictions in children with ID.

  • 7.
    Björk, Maria
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Wahlqvist, Moa
    Audiological Research Centre and SIDR, Faculty of Medicine and Health, Örebro University.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Anderzén-Carlsson, Agneta
    Audiological Research Centre and SIDR, Faculty of Medicine and Health, Örebro University.
    The consequences of deafblindness rules the family: Parents’ lived experiences of family life when the other parent has deafblindness2022In: The British Journal of Visual Impairment, ISSN 0264-6196, E-ISSN 1744-5809, Vol. 40, no 1, p. 18-28Article in journal (Refereed)
    Abstract [en]

    Deafblindness is a combined vision and hearing disability that restricts communication, access to information, and mobility, thus limiting a person’s activities and full participation in society. Literature on how this might affect the lives of family members is sparse. The aim of this study is to describe the lived experience of family life from the perspective of one parent when the other has deafblindness. Six partners of deafblind parents, four men and two women, agreed to participate. Three were deaf and communicated in Swedish sign language. Qualitative interviews were conducted and analysed using interpretative phenomenological analysis. Seven themes were identified during the analysis. When one parent has deafblindness, communication within the family and with people outside the family is affected. The non-deafblind partners tried to integrate deafblindness into everyday family life and constantly strove to compensate for the losses caused by deafblindness. They tried to enhance participation and engagement in everyday family life for the parent with deafblindness by facilitating communication and taking a greater part in some areas of their shared responsibilities at home. The results reveal that these partners often put themselves in second place. They and their families needed support to manage family life. Deafblindness affects the life of the entire family, and the non-deafblind partner has to take considerable responsibility for everyday life. Everyday life can be facilitated by an adapted environment and appropriate support, which should be offered to the entire family.

  • 8.
    Björkman, Berit
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Natural Science and Biomedicine. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Gimbler Berglund, Ingalill
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Enskär, Karin
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, HHJ. Biomedical Platform.
    Faresjö, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Natural Science and Biomedicine. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, HHJ. Biomedical Platform. Division of Medical Diagnostics, Region Jönköping County, Jönköping, Sweden.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Peri-radiographic guidelines for children with autism spectrum disorder: a nationwide survey in Sweden2017In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 43, no 1, p. 31-36Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: This study aimed to investigate the prevalence of guidelines and routines used nationwide when children with autism spectrum disorder (ASD) are taken care of and examined in a radiology department during a peri-radiographic process.

    METHOD: A nationwide survey was compiled and distributed to 94 radiology departments throughout Sweden, i.e. those performing more than 100 000 radiographic examinations annually. The survey was designed as a web questionnaire with seven questions on possible guidelines and/or routines for the departments when preparing and taking care of children with ASD in conjunction with a radiographic procedure. The data were scrutinized, using descriptive statistics.

    RESULTS: In total, 86 radiology departments responded to the survey (response rate 92%). Of those departments, 40 did not examine children with ASD. None of the departments included in the study had existing guidelines underpinning the routines when preparing and performing radiographic examinations for children diagnosed with ASD. A few departments (n = 8) would set aside more time for the procedure if it were known in advance that the child to be examined had been diagnosed with ASD. Also, some departments (n = 7) had radiographers who were more experienced in the care of children who would be appointed to perform examinations for children with ASD.

    CONCLUSION: It is suggested that guidelines should be developed in order to increase interaction in a supportive way and decrease anxiety during the peri-radiographic process with children with ASD.

  • 9.
    Björkman, Berit
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Natural Science and Biomedicine. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Gimbler Berglund, Ingalill
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Faresjö, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Natural Science and Biomedicine. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, HHJ. Biomedical Platform.
    Enskär, Karin
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. 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.
    Are radiographers prepared to meet children with special needs, when seen for an examination?2017In: Acta Radiologica, ISSN 0284-1851, E-ISSN 1600-0455, Vol. 58, no 1 Suppl., p. 16-16Article in journal (Refereed)
    Abstract [en]

    Introduction: Anxiety is often experienced by children undergoing health care procedures, and children with autism spectrum disorders (ADS) experience more anxiety than typically developed children. A prerequisite for obtaining an optimum procedure is firstly based on the health care provider’s knowledge about children with ASD, but may also depend on the use of guidelines. Two previous national surveys showed, that none radiology or paediatric departments and a minority of anaesthesiology departments throughout Sweden use specific guidelines when seeing children with ASD. Following, the purpose was to develop guidelines to use when caring for and preparing children with ASD in those settings.

    Methods: A modified Delphi method was used, including19 experts identified from the two afore mentioned surveys. The questions considered in the process, proceeded from previous research and the results from the surveys. The experts’ responses regarding the importance of each item, were analysed and scrutinized between each round.

    Results: The Delphi process resulted in guidelines consisting of 15 items and a checklist with 16 aspects. The items cover the areas: planning and involving parents, features in the environment, use of time, communication, thehealth care professionals. The checklist covers the child’spattern of communication, anxiety, sensory stimuli, special interests and likes/dislikes.

    Conclusions: To obtain an optimum caring encounter when a child with ASD is seen in the preoperative and radiology setting, a meticulous planning is important and the environment should be adjusted for the needs of the child. To accomplish this, guidelines need to be in place and be followed.

  • 10.
    Carlsson, Emma
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Natural Science and Biomedicine. Jönköping University, School of Health and Welfare, HHJ. Biomedical Platform.
    Ludvigsson, J.
    Division of Paediatrics, Department of Clinical and Experimental Medicine, Faculty of Health Sciences, Linköping University, Linköping, Sweden.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Faresjö, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Natural Science and Biomedicine. Jönköping University, School of Health and Welfare, HHJ. Biomedical Platform.
    High physical activity in young children suggests positive effects by altering autoantigen-induced immune activity2016In: Scandinavian Journal of Medicine and Science in Sports, ISSN 0905-7188, E-ISSN 1600-0838, Vol. 26, no 4, p. 441-450Article in journal (Refereed)
    Abstract [en]

    Physical activity in children is associated with several positive health outcomes such as decreased cardiovascular risk factors, improved lung function, enhanced motor skill development, healthier body composition, and also improved defense against inflammatory diseases. We examined how high physical activity vs a sedentary lifestyle in young children influences the immune response with focus on autoimmunity. Peripheral blood mononuclear cells, collected from 55 5-year-old children with either high physical activity (n = 14), average physical activity (n = 27), or low physical activity (n  = 14), from the All Babies In Southeast Sweden (ABIS) cohort, were stimulated with antigens (tetanus toxoid and beta-lactoglobulin) and autoantigens (GAD65, insulin, HSP60, and IA-2). Immune markers (cytokines and chemokines), C-peptide and proinsulin were analyzed. Children with high physical activity showed decreased immune activity toward the autoantigens GAD65 (IL-5, P < 0.05), HSP60 and IA-2 (IL-10, P < 0.05) and also low spontaneous pro-inflammatory immune activity (IL-6, IL-13, IFN-γ, TNF-α, and CCL2 (P  < 0.05)) compared with children with an average or low physical activity. High physical activity in young children seems to have positive effects on the immune system by altering autoantigen-induced immune activity.

  • 11.
    Dada, S.
    et al.
    Centre for Augmentative and Alternative Communication (CAAC), University of Pretoria, South Africa.
    Bastable, K.
    Centre for Augmentative and Alternative Communication, University of Pretoria, South Africa.
    Samuels, A.
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Centre for Augmentative and Alternative Communication, University of Pretoria, South Africa.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Department of Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Schlebusch, L.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    PARTICIPATION OF CHILDREN WITH DISABILITIES AND THEIR PEERS IN LOW- AND MIDDLE-INCOME COUNTRIES: Comparison of Children with and without Disabilities2023In: The Routledge Handbook of Inclusive Education for Teacher Educators: Issues, Considerations, and Strategies, Taylor & Francis, 2023, p. 157-190Chapter in book (Other academic)
    Abstract [en]

    Participation in all aspects of life is a right of children. However, in high-income countries, children with developmental disabilities (DD) are not afforded the same participation as their peers with typical development (TD). This can affect their life experiences and academic success. For children with DD, most of whom live in low- and middle–income countries (LMIC), understanding of how patterns of participation differ from their peers with TD is limited, which impacts how they are included in the classroom. This study described research on the participation of children with DD and their peers with TD in LMIC. A scoping review was conducted for studies on the participation of children with DD and their peers with TD from LMIC, using established assessments. Sixteen studies from eight middle-income countries were identified. These studies suggested that decreased participation for children with DD in comparison to their peers with TD was prevalent. Overall, the participation of children with DD and their peers with TD followed a similar pattern in the LMIC countries to that in high-income countries, with children with DD having lower participation in physical, social and skill-based activities, suggesting that the participation of children may follow universal patterns.

  • 12.
    Dada, Shakila
    et al.
    Centre for Augmentative and Alternative Communication, University of Pretoria, South Africa.
    Andersson, Anna Karin
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    May, Adele
    Centre for Augmentative and Alternative Communication, University of Pretoria, South Africa.
    Elgmark Andersson, Elisabeth
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Rehabilitation. 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.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Agreement between participation ratings of children with intellectual disabilities and their primary caregivers2020In: Research in Developmental Disabilities, ISSN 0891-4222, E-ISSN 1873-3379, Vol. 104, article id 103715Article in journal (Refereed)
    Abstract [en]

    Background: Participation of children with ID it is argued must be understood in relation to the fit with the environment. Since caregivers are a vital factor within the close environment of a child with intellectual disability, their perceptions are unequivocally important.

    Aims: The main aim of this study is to describe the self-reported participation of children with ID and the perceptions of their primary caregivers. Both frequency of attendance and perceived importance of activity was measured with self-reported and proxy-reports.

    Methods & Procedures: A custom developed Picture my Participation (PmP) survey was utilised in an interview format with children with intellectual disability whilst their primary caregivers completed the survey independently.

    Results: Overall, the perceptions of children with intellectual disabilities and of primary caregivers showed similarities regarding attendance and activities considered important. On group level, both children and primary caregivers perceived the child to have a high level of attendance ofFormal learning in school, Family mealtime, Interacting with family and Celebrations. An overall poor agreement in perceived frequency of attendance was found. However, in child-primary cargiver-dyads poor agreement in perceived frequency of attendance was found.

    Conclusions: While primary caregivers and children's ratings of attendance and selection of the most important activities appeared somewhat similar, there was a noted difference, in that primary caregivers’ were uniform in their selection, whilst there was a diversity in the selection of activities amongst children. 

  • 13.
    Danielsson, Henrik
    et al.
    Department of Behavioural Sciences and Learning (IBL), Linköping University, Linköping, Sweden.
    Imms, Christine
    Apex Australia Chair of Neurodevelopment and Disability, Melbourne, Australia; The University of Melbourne, Murdoch Children’s Research Institute, Melbourne, Australia.
    Ivarsson, Magnus
    Department of Behavioural Sciences and Learning (IBL), Linköping University, Linköping, Sweden.
    Almqvist, Lena
    Jönköping University, School of Education and Communication, HLK, CHILD. Mälardalen University, Västerås, Sweden.
    Lundqvist, Lars-Olov
    Örebro University, Örebro, Sweden.
    King, Gillian
    Bloorview Research Institute, Toronto, Canada; Department of Occupational Science and Occupational Therapy, University of Toronto, Toronto, Canada.
    Adams Lyngbäck, Liz
    Stockholm University, Stockholm, Sweden; FUB Swedish National Association for People with Intellectual Disability, Stockholm, Sweden.
    Andersson, Anna Karin
    Jönköping University.
    Arnell, Susann
    Örebro University, Örebro, Sweden.
    Arvidsson, Patrik
    Centre for Research & Development Region Gävleborg, Gävle, Sweden; Centre for Augmentative and Alternative Communication, University of Pretoria, Pretoria, South Africa.
    Augustine, Lilly
    Jönköping University, School of Education and Communication, HLK, CHILD. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Brooks, Rob
    Faculty of Health Studies, University of Bradford, Bradford, UK.
    Eldh, Maria
    Norrköping Habilitation Centre, Region Östergötland, Norrköping, Sweden.
    Engde, Lisa
    Linköping Habilitation Centre, Region Östergötland, Linköping, Sweden.
    Engkvist, Helena
    Jönköping University, School of Health and Welfare, HHJ, Department of Social Work.
    Gimbler Berglund, Ingalill
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Green, Dido
    Jönköping University, School of Health and Welfare, HHJ, Department of Rehabilitation. Jönköping University, School of Health and Welfare, HHJ. CHILD. College of Health Medicine and Life Sciences, Brunel University London, Uxbridge, UK.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Karlsson, Charlotte
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Lygnegård, Frida
    Jönköping University, School of Health and Welfare, HHJ, Department of Rehabilitation. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Sjödin, Linda
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping Habilitation Centre, Region Jönköpings län, Jönköping, Sweden.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Department of Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    A systematic review of longitudinal trajectories of mental health problems in children with neurodevelopmental disabilities2023In: Journal of Developmental and Physical Disabilities, ISSN 1056-263X, E-ISSN 1573-3580Article, review/survey (Refereed)
    Abstract [en]

    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.

  • 14.
    Darcy, Laura
    et al.
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Knutsson, Susanne
    Institution of Health Science, University College Borås, Sweden.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Enskär, Karin
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    The everyday life of the young child shortly after receiving a cancer diagnosis, from both children's and parent's perspectives2014In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 37, no 6, p. 445-456Article in journal (Refereed)
    Abstract [en]

    Background: Providing qualified, evidence-based healthcare to children requires increased knowledge of how cancer affects the young child's life. There is a dearth of research focusing on the young child's experience of everyday life.

    Objective: The purpose of this study was to explore young children's and their parents' perceptions of how cancer affects the child's health and everyday life shortly after diagnosis.

    Methods: Thirteen children with newly diagnosed cancer aged 1 to 6 years and their parents, connected to a pediatric oncology unit in Southern Sweden, participated in this study through semistructured interviews. Child and parent data were analyzed as a family unit, using qualitative content analysis.

    Results: Everyday life was spent at hospital or at home waiting to go back to hospital. Analysis led to the following categories: feeling like a stranger, feeling powerless, and feeling isolated.

    Conclusions: The child wants to be seen as a competent individual requiring information and participation in care. Parents need to be a safe haven for their child and not feel forced to legitimize painful and traumatic procedures by assisting with them. Nurses play a major role in the lives of children. Research with and on the young child is necessary and a way of making them visible and promoting their health and well-being.

    Implications for practice: Nurses need to reevaluate the newly diagnosed child's care routines so as to shift focus from the illness to the child. This requires competent nurses, secure in their caring role.

  • 15.
    Elgmark Andersson, Elisabeth
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Rehabilitation. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Sjöqvist, Michael
    Granlund, Mats
    Participation restriction is not equal to low frequency of participation in children with  mild intellectual DisabilityManuscript (preprint) (Other academic)
  • 16.
    Enskär, Karin
    et al.
    Jönköping University, School of Health Science, HHJ, Dep. of Nursing Science. Jönköping University, School of Health Science, HHJ. CHILD.
    Ankarcrona, Elisabeth
    Pediatric department, Ryhov County Hospital, Jönköping, Sweden.
    Jörgense, Anna
    Pediatric department, Ryhov County Hospital, Jönköping, Sweden.
    Huus, Karina
    Jönköping University, School of Health Science, HHJ, Dep. of Nursing Science. Jönköping University, School of Health Science, HHJ. CHILD.
    Undocumented refugee children in Swedish healthcare: Nurses' knowledge concerning regulations and their attitudes about the care2012In: Vård i Norden, ISSN 0107-4083, E-ISSN 1890-4238, ISSN 0107-4083, Vol. 32, no 1, p. 44-47Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to investigate nurses' attitudes about care for undocumented refugee children and also to investigate the knowledge among nurses concerning the regulations for this care. The study is quantitative and based on a questionnaire sent to all nurses working in pediatric healthcare and medical care in a medium-sized county in Sweden. The overall response was 91 questionnaires (55.9%). Most of the respondents felt insecure or lacked knowledge of what regulations are valid when undocumented refugee children seek medical care or healthcare. Almost all nurses had a positive attitude toward caring for these children, but they feel they lack knowledge about the regulations regarding their care. To optimize the care situation for these children the regulations should be reviewed and altered to allow the nurse, legally and securely, to care for them.

  • 17.
    Enskär, Karin
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ. CHILD. School of Life Science, University of Skövde, Sweden.
    Knutsson, Susanne
    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. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Darcy, Laura
    Department of Health Science, University College Borås, Sweden.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    A Swedish perspective on nursing and psychosocial research in paediatric oncology: A literature review2015In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 19, no 3, p. 310-317Article, review/survey (Refereed)
    Abstract [en]

    PURPOSE: A dramatic improvement in outcomes of survival rates of childhood cancer has been seen. Caring science research is central in providing skills and knowledge to the health care sector, but few overviews of the content of published research have been carried out. The aim of this review was to investigate the content and methodology of published studies in paediatric oncology relevant to caring science, and also to compare possible differences in content and method of the published studies from the nursing and psychosocial perspectives.

    METHOD: A systematic literature review was performed of 137 published articles on paediatric oncology relevant to caring science in Sweden.

    RESULTS: The results show that most of the studies were descriptive or comparative ones with a quantitative design. Most of them focused on parents (43%) or children (28%). Most of the studies investigated wellbeing (88%), using questionnaires (54%) or interviews (38%). Several different measurement instruments had been used. While the results were often clearly presented, the clinical implications were more diffuse. The most acknowledged research fund was the Swedish Childhood Foundation (75%).

    CONCLUSIONS: To reflect the children' perspectives in paediatric oncology require that future researchers take on the challenge of including children (even young ones) in research. The use of a limited number of agreed measurement instruments is desirable. The biggest challenge for the future is to make a shift from explorative to intervention studies. There is an urgent need to transform research results into clinical practice.

  • 18.
    Enskär, Karin
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Darcy, Laura
    University of Borås, Sweden.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Knutsson, Susanne
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. 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.
    Experiences of young children with cancer and their parents with nurses' caring practices during the cancer trajectory2020In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 37, no 1, p. 21-34Article in journal (Refereed)
    Abstract [en]

    Children with cancer require repeated hospitalizations and the family's everyday life and routines undergo change. Concrete descriptions of how nurses act when caring for children with cancer throughout the various phases of care and treatment are sparsely highlighted in the literature. The aim of this study was to describe young children with cancer and their parents' experiences of nurses' caring practices over a 3-year period, from diagnosis to follow-up. This study is based on semistructured interviews with 25 children newly diagnosed with cancer, aged 1 to 6 years, and their parents, connected to a pediatric oncology unit in Sweden. Child and parent data were analyzed with a deductive content analysis using Swanson's theory of caring. The result shows that nurse care practices directed toward young children with cancer and their parents are to some extent similar across a 3-year period from diagnosis to follow-up but also differ in some ways. Nurses' caring practices aim to support children and parents in the transition to a "new normal." Child- and family-friendly care processes include the following: creating hope and a trustful relationship, asking rather than assuming, providing knowledge and information, performing tasks skillfully, displaying an interest in the child's and parents' life outside the hospital, and helping the family to trust in the future and other health care providers. Based on these results, we recommend the development of a standardized and structured nursing care plan or clinical guideline with detailed information on how to carry out clinical nurse care practices in the different phases.

  • 19.
    Enskär, Karin
    et al.
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD. School of Life Science, University of Skövde, Skövde, 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.
    Darcy, Laura
    Institution of Health Science, University College of Borås, Borås, Sweden.
    Knutsson, Susanne
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Institution of Health Science, University College of Borås, Borås, Sweden.
    An analytic review of clinical implications from nursing and psychosocial research within Swedish pediatric oncology2015In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 30, no 4, p. 550-559Article, review/survey (Refereed)
    Abstract [en]

    The purpose of this manuscript is to analyze researchers' suggestions for clinical implications of their findings as stated in recent published articles on nursing and psychosocial research within the setting of Swedish pediatric oncology. Identified categories included staff awareness of the effects of child illness on families; systems for care improvement; provision of quality of care, education and support; and empowerment of children and families. In order to be able to realize these clinical suggestions, expanded research is needed as well as continued education and support for staff. 

  • 20.
    Enskär, Karin
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Knutsson, Susanne
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. 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.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Darcy, Laura
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science.
    A literature review of the results from nursing and psychosocial research within Swedish pediatric oncology2014In: Journal of Nursing & Care, ISSN 2167-1168, Vol. 3, no 6, p. 1-8Article, review/survey (Refereed)
    Abstract [en]

    The body of research-based knowledge in paediatric caring science has been increasing leading to dramaticimprovements in treatment. The purpose of this manuscript was to analyze results as stated by the researchers', inrecently published articles on nursing and psychosocial research, within Swedish pediatric oncology setting. Thiswas done through a review of 137 published articles about paediatric oncology related to caring science in Sweden.The result shows that the illness has affected, in both positive and negative ways, the wellbeing of everyone cominginto contact with the child. The cancer also causes distress related to all aspects of life including physical,psychological, existential and social. Mediating factors for the experience of distress and wellbeing are: disease andtreatment severity, age, gender and ethnicity of the participant, time since diagnosis, the use of internal and externalsupport, and the identity of the person reporting the data. Health promoting aspects frequently reported are: familytogetherness, coping strategies, engaging in normal life and activities, and quality of care which includes emotionalsupport, information and family participation in care. The hospital staff has to be aware of the psychosocial issuesexperienced by children with cancer and their families, and they have to acknowledge the value of formalinterventions, reporting benefits for children, families, and themselves.

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  • 21.
    Gimbler Berglund, Ingalill
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Björkman, Berit
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Natural Science and Biomedicine. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Enskär, Karin
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Faresjö, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Natural Science and Biomedicine.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Management of children with Autism Spectrum Disorder in the anesthesia and radiographic context2017In: Journal of Developmental and Behavioral Pediatrics, ISSN 0196-206X, E-ISSN 1536-7312, Vol. 38, no 3, p. 187-196Article in journal (Refereed)
    Abstract [en]

    Objective: As a primary objective, this study purports to develop guidelines to better care for children with autism spectrum disorder (ASD), particularly regarding these children's preparation for anesthesia and radiologic procedures.

    Methods: Using a Delphi method with an online distribution of questionnaire, guidelines for caring for children with ASD were created. Twenty-one participants were included in the expert panel. These participants were working with children with ASD in several anesthesia and radiology departments in Sweden. A list of items was created from a previous survey and the literature. In the first round, the items with <60% agreement were discarded. Items were merged, and a new list was created. Two more similar rounds were performed. In the last 2 rounds, 21 participants responded, and 80% agreement was considered to be consensus.

    Results: The final guidelines consisted of 14 items and a checklist of 16 factors. The 5 areas covered by the items and the checklist were as follows: planning involving parents/guardians, features in the environment, and use of time, communication, and the health care professionals. The organization was important in making it possible for the health care professional to care for the individual child according to the child's needs. It was important to involve the parents/guardians to obtain knowledge about the functioning of the child.

    Conclusion: A caring encounter involving a child with ASD in the anesthesia and radiology contexts requires advance planning, catered specifically to the individual needs of each child. To accomplish this, general knowledge regarding ASD and ASD's particular manifestation in the child entrusted to their care, is required from the health care workers. The organization needs to have structures in place to facilitate this process.

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  • 22.
    Gimbler Berglund, Ingalill
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. 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.
    Enskär, Karin
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Faresjö, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Natural Science and Biomedicine. Jönköping University, School of Health and Welfare, HHJ. Biomedical Platform.
    Björkman, Berit
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Natural Science and Biomedicine. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Perioperative and anesthesia guidelines for children with autism: A nationwide survey from Sweden2016In: Journal of Developmental and Behavioral Pediatrics, ISSN 0196-206X, E-ISSN 1536-7312, Vol. 37, no 6, p. 457-464Article in journal (Refereed)
    Abstract [en]

    Objective: The overall aim of this study was to describe the current set of guidelines for the preparation and care for children with autism spectrum disorder (ASD) in the perioperative setting across Sweden and explore the content of these guidelines in detail.

    Method: An online questionnaire was distributed to the chairpersons of all anesthesia departments (n = 68) and pediatric departments (n = 38) throughout Sweden. Follow-up phone calls were made to those departments that did not return the questionnaire. The presence of guidelines was analyzed through descriptive statistics. These guidelines and comments on routines used in these departments were analyzed inspired by conventional content analysis.

    Results: Seven of the 68 anesthesia departments and none of the 38 pediatric departments across Sweden have guidelines for preparing and/or administering care to children with ASD within the perioperative setting. From the guidelines and routines used, 3 categories emerge: "lacking the necessary conditions," "no extra considerations needed," and "care with specific consideration for children with ASD." These 3 categories span a continuum in the care. In the first category, the anesthesia induction could result in the child with ASD being physically restrained. In the last category, the entire encounter with the health care service would be adapted to the specific needs of the child.

    Conclusion: There is a lack of evidence-based guidelines specifically designed to meet the needs of children with ASD in the preoperative period in Sweden. Further research is needed to understand if children with ASD would benefit from evidence-based guidelines.

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  • 23.
    Gimbler Berglund, Ingalill
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. 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.
    Enskär, Karin
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Møller Christensen, Berit
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Natural Science and Biomedicine. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, HHJ. Biomedical Platform.
    Faresjö, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Natural Science and Biomedicine. Jönköping University, School of Health and Welfare, HHJ. Biomedical Platform.
    Jacobsson, Brittmarie
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Natural Science and Biomedicine. Jönköping University, School of Health and Welfare, HHJ. Centre for Oral Health.
    How do we care for children with Autism Spektrum Disorder when coming for a procedure requiring anesthesia?2019Conference paper (Refereed)
  • 24.
    Hasselberg, Marita
    et al.
    Child and Adolescent Clinic, Södra Älvsborg's Hospital, Borås, Sweden.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Golsäter, Marie
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Breastfeeding preterm infants at a neonatal care unit in rural Tanzania2016In: Journal of Obstetric, Gynecologic and Neonatal Nursing, ISSN 0884-2175, E-ISSN 1552-6909, Vol. 45, no 6, p. 825-835Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To describe the breastfeeding experiences of mothers with preterm and low-birth-weight infants in a neonatal unit in Tanzania.

    DESIGN: A qualitative research design.

    SETTING: A neonatal unit at a referral hospital in rural Tanzania.

    PARTICIPANTS: Convenience sample of 10 new mothers with preterm infants. Additionally, to triangulate the data, five nurses affiliated with the neonatal unit were interviewed.

    METHODS: A semistructured interview guide was used for data collection. All interviews were audiotaped and transcribed verbatim. Data were analyzed with inductive qualitative content analysis.

    RESULTS: One main category, The mother has to adapt to the new situation to make breastfeeding natural, and three generic categories, The challenges of breastfeeding a premature infant, Enhancing the feeding situation, and The need for support, were used to describe breastfeeding challenges. Challenges consisted of the perception that the infant was different than healthy infants and the infant's and mother's health problems and needs. To improve the feeding situation, mothers learned how to feed their infants using timing strategies. Confidence and security were achieved with support from family and friends, the other mothers, and the health care staff.

    CONCLUSION: Mothers perceived breastfeeding as natural but needed support to overcome the challenges of breastfeeding preterm infants. Through support and education they were empowered, adapted to their new situations, and felt confident with breastfeeding.

  • 25.
    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.
    Brekke, Hilde
    Ludvigsson, Jonas
    Ludvigsson, Johnny
    Relationship of food frequencies as reported by parents to overweight and obesity at 5 years2009In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 98, no 1, p. 139-143Article in journal (Refereed)
    Abstract [en]

    Aim: To investigate if food frequencies are related to overweight/obesity in 5-year-old children.

    Methods: During 1997–1999, 21 700 infants were invited to participate in ABIS (All Babies in Southeast Sweden), a prospective, cohort study. Participants were followed from birth (n = 16 058) to 5 years (n = 7356). Food frequencies reported by parents at 2.5 and 5 years were studied in the relation to overweight/obesity at 5 years using multiple logistic regressions. A p-value < 0.01 was considered statistically significant.

    Results: At 2.5 years frequencies of intake of cheese were positively associated with overweight/obesity at 5 years while porridge, fried potatoes/french fries and cream/crème fraiche showed a negative association. When adjusting for known risk factors, porridge and fried potatoes/french fries remained negatively associated with overweight/obesity. At 5 years, chocolate and lemonade were positively associated with overweight/obesity whereas cream/crème fraiche, pastries and candy were negatively associated. Candy remained negatively associated to overweight/obesity after adjustment for potential confounders.

    Conclusion: Food frequencies do not offer any simple explanation for overweight/obesity. Porridge at 2.5 years may protect against overweight/obesity at 5 years, while lemonade may contribute to overweight. Our finding that fried potatoes/french fries may protect against overweight/obesity is unexpected and must be interpreted with caution. These findings should be confirmed by prospective studies using objective recordings.

  • 26.
    Huus, Karina
    et al.
    Jönköping University, School of Health Science, HHJ, Dep. of Nursing Science. Jönköping University, School of Health Science, HHJ. CHILD.
    Castor, Maria
    Rosander Ek, Charlotte
    Enskär, Karin
    Jönköping University, School of Health Science, HHJ, Dep. of Nursing Science. Jönköping University, School of Health Science, HHJ. CHILD.
    Hur syskon påverkas av att ha en bror eller syster med diabetes - ett föräldraperspektiv2012In: Vård i Norden, ISSN 0107-4083, E-ISSN 1890-4238, Vol. 32, no 2, p. 41-45Article in journal (Refereed)
  • 27.
    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 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.

  • 28.
    Huus, Karina
    et al.
    Jönköping University, School of Health Science, HHJ, Dep. of Nursing Science. Jönköping University, School of Health Science, HHJ. CHILD.
    Enskär, Karin
    Jönköping University, School of Health Science, HHJ, Dep. of Nursing Science. Jönköping University, School of Health Science, HHJ. CHILD.
    Adolescents' experience of living with diabetes2007In: Paediatric Nursing, ISSN 0962-9513, Vol. 19, no 3, p. 29-31Article in journal (Refereed)
  • 29.
    Huus, Karina
    et al.
    Jönköping University, School of Health Science, HHJ, Dep. of Nursing Science. Jönköping University, School of Health Science, HHJ. CHILD.
    Enskär, Karin
    Jönköping University, School of Health Science, HHJ, Dep. of Nursing Science. Jönköping University, School of Health Science, HHJ. CHILD.
    Living with diabetes type 1 from an adolescent's perspective2006In: Diabetic medicine: journal of diabetes UK Vol. 23 Suppl. 4: Abstracts of the 19th World Diabetes Congress, Cape Town, South Africa, 3-7 December 2006., 2006, p. 261-Conference paper (Other academic)
  • 30.
    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 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 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.

  • 31.
    Huus, Karina
    et al.
    Jönköping University, School of Health Science, HHJ, Dep. of Nursing Science. Division of Pediatrics, Diabetes Research Centre, Linköping University, Linköping, Sweden .
    Ludvigsson, Jonas F
    Department of Pediatrics, Clinical Research Centre, Örebro University Hospital, Örebro, Sweden; Clinical Epidemiology Unit, Department of Medicine, Karolinska University Hospital, Stockholm, Sweden .
    Enskär, Karin
    Jönköping University, School of Health Science, HHJ, Dep. of Nursing Science. Jönköping University, School of Health Science, HHJ. CHILD.
    Ludvigsson, Johnny
    Division of Pediatrics, Diabetes Research Centre, Linköping University, Linköping, Sweden .
    Exclusive breastfeeding of Swedish children and its possible influence on the development of obesity: a prospective cohort study2008In: BMC Pediatrics, ISSN 1471-2431, E-ISSN 1471-2431, Vol. 8, article id 42Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Overweight and obesity are increasing among children all over the world. Socio-economic factors may influence the development of overweight and obesity in childhood, and it has been proposed that breastfeeding may protect against obesity. The aim of our study was to examine the relationship between exclusive breastfeeding and obesity when potential confounders, such as socioeconomic factors, are considered. METHODS: The data analyzed was from ABIS (All Babies in Southeast Sweden), a prospective cohort study. All parents with children born between October 1, 1997 and October 1, 1999 in Southeast Sweden (n = 21,700) were asked to participate. Parents were asked to answer periodic questionnaires from the time of the child's birth (n = 16,058) until he/she was five years of age (n = 7,356). Cutoffs for overweight and obesity were defined according to Cole et al, age and gender adjusted. Short-term exclusive breastfeeding was defined as < 4 months of exclusive breastfeeding. Multiple logistic regressions were used to identify variables that predict the child's BMI (Body Mass Index) at five years of age. RESULTS: At five years of age, 12.9% of the children in the study were overweight and 4.3% were obese. At the age of three months, 78.4% of the children were being breastfed exclusively. The median exclusive breastfeeding duration was four months. High maternal BMI > 30 (AOR = 1.07; CI = 1.05-1.09; P < 0.001), maternal smoking (AOR = 1.43; CI = 1.05-1.95; P = 0.023) and being a single parent (AOR = 2.10; CI = 1.43-3.09; P < 0.001) were associated with short-term exclusive breastfeeding (less than 4 months). Short-term exclusive breastfeeding was less common if one of the parents had a university degree (Mother: AOR = 0.74; CI = 0.61-0.90; P = 0.003 Father: AOR = 0.73; CI = 0.58-0.92; P = 0.008) or if the father was more than 37 years old (AOR = 0.74; CI = 0.55-0.99; P = 0.045). Short-term exclusive breastfeeding was associated with obesity in five-year-old children (simple logistic regression: OR = 1.44; CI = 1.00-2.07; P = 0.050), but when including other independent factors in the analysis, short-term exclusive breastfeeding did not attain statistical significance. CONCLUSION: We cannot exclude the possibility that exclusive breastfeeding influences weight development, but it does not seem to protect against obesity at five years of age.

  • 32.
    Huus, Karina
    et al.
    Jönköping University, School of Health Science, HHJ, Dep. of Nursing Science. Jönköping University, School of Health Science, HHJ. CHILD.
    Ludvigsson, Jonas F
    Enskär, Karin
    Jönköping University, School of Health Science, HHJ, Dep. of Nursing Science. Jönköping University, School of Health Science, HHJ. CHILD.
    Ludvigsson, Johnny
    Risk factors in childhood obesity: findings from the All Babies In Southeast Sweden (ABIS) cohort2007In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 96, no 9, p. 1321-1325Article in journal (Refereed)
  • 33.
    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.
    Morwane, R
    Univ Pretoria, Ctr Augmentat & Alternat Commun, Pretoria, South Africa.
    Ramaahlo, M
    Univ Pretoria, Ctr Augmentat & Alternat Commun, Pretoria, South Africa.
    Balton, S
    Univ Pretoria, Ctr Augmentat & Alternat Commun, Pretoria, South Africa.
    Pettersson, E
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science.
    Gimbler Berglund, Ingalill
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Dada, S
    Univ Pretoria, Ctr Augmentat & Alternat Commun, Pretoria, South Africa.
    Voices of children with intellectual disabilities on participation in daily activities2021In: African Journal of Disability, ISSN 2223-9170, Vol. 10, p. 1-9, article id a792Article in journal (Refereed)
    Abstract [en]

    Background: Participation in daily activities is expressed as a human right. Full participation of children with disabilities in daily activities creates optimal opportunities for learning and development. Previous studies have focused primarily on proxy ratings of participation of children with intellectual disabilities in daily activities. However, little is known about how the children rate barriers and facilitators to their participation in everyday activities. Objectives: To identify barriers to and facilitators for everyday activities as experienced by children with intellectual disabilities from low- and middle-income countries and high-income countries. The research questions were as follows: 'what barriers to participation do children with disabilities experience in everyday activities?' and 'what facilitators to participation do children with disabilities experience in everyday activities?' Method: A qualitative content analyses was used in this study, and individual interviews were conducted with 49 children with intellectual disabilities. The interviews were performed using pictures. The children also selected the most important activities and described in their own words the facilitators and barriers relevant to being able to perform the activities. Results: The most important activities were organised leisure activities, formal learning at school, taking care of other family members and family mealtimes. Self-reported barriers identified were personal functioning, social exclusion and lack of resources. The identified facilitators included satisfaction, personal capability, being included and having access to resources. Conclusion: These findings provide important knowledge about the factors to consider in the development of interventions, aimed at improving the participation of children with intellectual disabilities.

  • 34.
    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.
    Ngoc, Luc Dang
    Da Nang University of Medical Technology and Pharmacy, Viet Nam.
    Dam, Kim An
    Da Nang University of Medical Technology and Pharmacy, Viet Nam.
    Ljusegren, Gunilla
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Enskär, Karin
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Gimbler Berglund, Ingalill
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science.
    Caring for children in pain: a Vietnamese perspective2016In: Annals of Nursing and Practice, ISSN 2379-9501, Vol. 3, no 7, article id 1071Article in journal (Refereed)
    Abstract [en]

    Purpose: The purpose of this study was to identify and describe Vietnamese nurse’s pain management in children.

    Methods: A quantitative cross-sectional study using a questionnaire measuring 110 registered Vietnamese nurse’s perception of pain and pain management in children.

    Results: The results showed that many nurses in Vietnam are using pain assessment instruments as well as non-pharmacological alleviations methods extensively. Vietnamese nurses had high levels of knowledge in physiology of pain. Nurses’ knowledge about the use of pain medication was correlated to attitudes. The higher level of knowledge the nurses had about pain medication, the more positive was their attitude towards pain management in general.

    Conclusion: In conclusion, the most commonly used non-pharmacology pain alleviation method among the nurses was talking to the child and be close to the child. This method to attempt to relive pain is valuable as it doesn’t require any specific equipment. Vietnamese nurses had high levels of knowledge about physiology of pain.

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  • 35.
    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.
    Olsson, Lena M.
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Elgmark Andersson, Elisabeth
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Rehabilitation. 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.
    Augustine, Lilly
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Kristianstad University.
    Perceived needs among parents of children with a mild intellectual disability in Sweden2017In: Scandinavian Journal of Disability Research, ISSN 1501-7419, E-ISSN 1745-3011, Vol. 19, no 4, p. 307-317Article in journal (Refereed)
    Abstract [en]

    Parents of children with a mild intellectual disability experience more distress and require more support than other parents. The aim was to investigate the perceived family needs of parents of children with an MID and to investigate the relationship between parents’ perceived self-efficacy in their parental role and in collaborating with professionals as well as with their perceived needs for support. Interviews were based on questionnaires to the parents of 38 children. The results revealed that parents perceived need for information, respite, and venues in which to meet other parents in similar situations. The informational needs were related to parental self-efficacy and obtaining support. A lower need for information was related to higher perceived control over services. In conclusion, it appears that professionals need to work to strengthen parents’ ability to ask for support and to express the needs. Well-informed parents will develop stronger parental self-efficacy and perceived control over services.

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  • 36.
    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.
    Schlebusch, L.
    Centre for Augmentative and Alternative Communication, Faculty of Humanities, University of Pretoria, Pretoria, South Africa.
    Ramaahlo, M.
    Centre for Augmentative and Alternative Communication, Faculty of Humanities, University of Pretoria, Pretoria, South Africa.
    Samuels, A.
    Centre for Augmentative and Alternative Communication, Faculty of Humanities, University of Pretoria, Pretoria, South Africa.
    Gimbler Berglund, Ingalill
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Dada, S.
    Centre for Augmentative and Alternative Communication, Faculty of Humanities, University of Pretoria, Pretoria, South Africa.
    Barriers and facilitators to participation for children and adolescents with disabilities in low- and middle-income countries – A scoping review2021In: African Journal of Disability, ISSN 2223-9170, Vol. 10, p. 1-10, article id a771Article in journal (Refereed)
    Abstract [en]

    Background: Research has shown that all children and adolescents have the right to participate in their everyday life. However, little is known about what impacts the participation of children and adolescents with disabilities living in low-and middle-income countries. Objective: The present study undertakes a scoping review of research to synthesise the current literature about barriers and facilitators to participation in everyday life for children and adolescents with disabilities living in lowland middle-income countries. Method: A scoping review was conducted. The databases Psyc INFO, MEDLINE, CINAHL, Pubmed, ERIC and African Wide information were searched for studies published between 2001 and April 2018. Data was analysed using deductive content analysis. The barriers and facilitators to participation were categorised into personal factors, social factors, environmental factors, and policy and programme factors. Result: In the end, 17 articles were included for data extraction as they mentioned barriers and facilitators to participation for children and adolescents with disabilities. Most of the reviewed studies reported on barriers to participation. Only one of the studies was performed in a country classified as a low-income country; all other studies were performed in middle-income countries. The results indicate that some factors, especially social factors, could be perceived as both facilitators and barriers to participation. Conclusion: There is a lack of studies describing barriers and facilitators in lowland middleincome countries. Barriers and facilitators in proximity to the child and family are most frequently described in the literature.

  • 37.
    Huus, Karina
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dept. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Sundqvist, Ann-Sofie
    Faculty of Medicine and Health, University Health Care Research Center, Örebro University, Örebro, Sweden.
    Anderzén-Carlsson, Agneta
    Faculty of Medicine and Health, University Health Care Research Center, Örebro University, Örebro, Sweden.
    Wahlqvist, Moa
    Faculty of Medicine and Health, University Health Care Research Center, Örebro University, Örebro, Sweden; Audiological Research Center, Faculty of Medicine and Health, Örebro University, Örebro, Sweden.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dept. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD. The Swedish National Resource Center for Deafblindness, Lund, Sweden.
    Living an ordinary life - yet not: the everyday life of children and adolescents living with a parent with deafblindness2022In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 17, no 1, article id 2064049Article in journal (Refereed)
    Abstract [en]

    INTRODUCTION: The family life of people living with one family member with deafblindness has been sparsely described.

    PURPOSE: The aim of the study was to explore how children experience their everyday family life when having a parent with deafblindness.

    METHODS: An explorative study in which data have been collected by qualitative interviews of children. Qualitative content analysis has been used for analysing the data.

    RESULTS: Overall theme; Living an ordinary life-yet not, is based on four categories with subcategories. A family like any other describes: Having the same family life as their friends, Acting like other children and It is what it is. Different everyday life describes: Acknowledging differences, Adjusting to the parent's needs and Financial strain. Being there for the parent describes: Helping the parent and Protecting the parent from harm. Being emotionally affected describes: Feelings of frustration, Feelings of compassion and Need for support.

    CONCLUSION: Children as relatives of parents with deafblindness have been given a voice. The children live an ordinary life, but at the same time a different ordinary life. Professionals need to take the child and their needs into account when support is given.

  • 38.
    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.
    Åkerman, Linda
    Linköping University, Sweden.
    Raustorp, Anders
    Linnaeus University and University of Gothenburg, Sweden.
    Ludvigsson, Johnny
    Linköping University and Östergötland County Council, Sweden.
    Physical Activity, Blood Glucose and C-Peptide in Healthy School-Children, a Longitudinal Study2016In: PLOS ONE, E-ISSN 1932-6203, Vol. 11, no 6, article id e0156401Article in journal (Refereed)
    Abstract [en]

    Aim

    To further elucidate the relationship between physical activity and several risk factors for development of diabetes (glucose, C-peptide and obesity) over time.

    Methods

    A prospective longitudinal study where physical activity was measured on 199 children from Kalmar and Linköping at age 8, and the same 107 children from Linköping again at age 12. Anthropometric data was collected and blood was analyzed for C-peptide and f-glucose. The children in the study were representative for the general Swedish child population, and on an average lean.

    Results

    High physical activity was related to lower C-peptide at age 8 and 12. This correlation was especially pronounced in boys, who also were more physically active than girls at both time points. The association seen at 8 years of age was similar at age 12 in most children. Children with higher BMI Z-Score had a higher fasting C-peptide (age 12) but linear regression showed that children with more steps per day were less likely to have a higher fasting C-peptide irrespective of BMI. Longitudinal follow-up showed that a decrease in physical activity increased insulin resistance and β-cell load.

    Conclusions

    Already in young children, physical activity improves insulin sensitivity and decreases the need of C-peptide over time. This seems to become even more pronounced with increasing age when children are followed longitudinally. Low physical activity increases the load on insulin producing β-cells, might increase the risk for both type 1- and 2 diabetes.

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  • 39.
    Li, Liya
    et al.
    Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare. Jönköping University, School of Health and Welfare, HHJ. CHILD. School of Nursing, Tianjin Medical University, Tianjin, China.
    Møller Christensen, Berit
    Jönköping University, School of Health and Welfare, HHJ, Department of Natural Science and Biomedicine. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, HHJ. Biomedical Platform.
    Falkmer, Marita
    Jönköping University, School of Education and Communication, HLK, CHILD. Curtin Autism Research Group, Curtin School of Allied Health, Curtin University, Perth, Australia.
    Zhao, Yue
    School of Nursing, Tianjin Medical University, Tianjin, China.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Content validity of the instrument 'Picture My Participation' for measuring participation of children with and without autism spectrum disorder in mainland China2023In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 30, no 8, p. 1237-1247Article in journal (Refereed)
    Abstract [en]

    Background

    Picture My Participation (PMP) is a valid instrument for measuring participation of children with disabilities, but it has not yet been evaluated for its content validity for children with autism spectrum disorders (ASD) in mainland China.

    Aim

    To explore the content validity of the simplified Chinese version of PMP (PMP-C; Simplified) for children with ASD and typically developing (TD) children in mainland China.MethodsA sample of children with ASD (n = 63) and TD children (n = 63) recruited through purposive sampling were interviewed using the PMP-C (Simplified), which contains 20 items of everyday activities. Children rated attendance and involvement on all activities and selected three most important activities.

    Results

    Children with ASD selected 19 of 20 activities as the most important activity while TD children selected 17 activities. Children with ASD used all scale points for rating attendance and involvement on all activities. TD children used all scale points for rating attendance and involvement in 10 and 12 of 20 activities, respectively.

    Conclusion

    The contents of 20 activities of PMP-C (Simplified) were relevant for all children and especially for children with ASD for assessing participation in community, school and home activities.

  • 40.
    Lin, Chung-Ying
    et al.
    Department of Rehabilitation Sciences, The Hong Kong Polytechnic University, Hung Hom, Hong Kong.
    Imani, Vida
    Pediatric Health Research Center, Tabriz University of Medical Sciences, Tabriz, Iran.
    Broström, Anders
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. ADULT.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Hodges, Eric A.
    School of Nursing, The University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
    Pakpour, Amir H.
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Social Determinants of Health Research Center, Research Institute for Prevention of Non-Communicable Diseases, Qazvin University of Medical Sciences, Qazvin, Iran.
    Psychological distress and quality of life in Iranian adolescents with overweight/obesity: mediating roles of weight bias internalization and insomnia2020In: Eating and Weight Disorders, ISSN 1124-4909, E-ISSN 1590-1262, Vol. 25, p. 1583-1592Article in journal (Refereed)
    Abstract [en]

    PURPOSE: To examine whether weight-related self-stigma (aka weight bias internalization) and insomnia are potential predictors of psychological distress and quality of life (QoL) among Iranian adolescents with overweight (OW)/obesity (OB). To examine whether weight-related self-stigma and insomnia are potential mediators in the relationship between excess weight and health outcomes of distress and QoL.

    METHODS: All participants (n = 934; 444 males; mean age = 15.7 ± 1.2 years; zBMI = 2.8 ± 1.0) completed questionnaires on weight-related self-stigma and insomnia at baseline. Six months later, they completed questionnaires on psychological distress and QoL to assess health outcomes. Relationships among variables were tested using mediation analyses with bootstrapping method.

    RESULTS: Weight-related self-stigma significantly mediated the effects of zBMI on psychological distress (effect = 0.22; bootstrapping SE = 0.09; 95% CI = 0.08, 0.45), psychosocial QoL (effect = - 0.64; bootstrapping SE = 0.19; 95% CI = - 1.10, - 0.32), and physical QoL (effect = - 1.35; bootstrapping SE = 0.54; 95% CI = - 2.43, - 0.26). Insomnia also significantly mediated the effects of zBMI on psychological distress (effect = 2.18; bootstrapping SE = 0.31; 95% CI = 1.61, 2.81), psychosocial QoL (effect = - 0.89; bootstrapping SE = 0.33; 95% CI = - 1.60, - 0.28), and physical QoL (effect = - 0.83; bootstrapping SE = 0.42; 95% CI = - 1.69, - 0.02). Full mediations were found in psychosocial QoL; partial mediations were found in psychological distress and physical QoL.

    CONCLUSIONS: Weight-related self-stigma and insomnia were significant mediators in the effects of excess weight on health outcomes. Therefore, it is important to identify and treat weight-related self-stigma and insomnia for adolescents with OW/OB.

    LEVEL OF EVIDENCE: Level V, cross-sectional descriptive study.

  • 41. Ludvigsson, Johnny
    et al.
    Huus, Karina
    Jönköping University, School of Health Science, HHJ, Dep. of Nursing Science. Jönköping University, School of Health Science, HHJ. CHILD.
    Eklöv, Kristina
    Klintström, Rebecka
    Lahdenperä, Anne
    Fasting plasma glucose levels in healthy preschool children: effects of weight and lifestyle.2007In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 96, no 5, p. 706-709Article in journal (Refereed)
  • 42.
    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.

  • 43.
    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, E-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.

  • 44.
    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.

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  • 45.
    Lygnegård, Frida
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Rehabilitation. 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. Swedish Institute of Disability Research, Jönköping University, Jönköping, Sweden.
    Kapetanovic, Sabina
    Jönköping University, School of Health and Welfare. Department of Social and Behavioural Studies, University West, Trollhättan, Sweden.
    Augustine, Lilly
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD. Swedish Institute of Disability Research, Jönköping University, Jönköping, Sweden.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD. Swedish Institute of Disability Research, Jönköping University, Jönköping, Sweden.
    Short-term longitudinal participation trajectories related to domestic life and peer relations for adolescents with and without self-reported neurodevelopmental impairments2021In: Heliyon, E-ISSN 2405-8440, Vol. 7, no 4, article id e06784Article in journal (Refereed)
    Abstract [en]

    Background

    With maturity and development, complexity in demands and roles change. As participation is often restricted in children with disabilities, this process might be delayed in adolescents. Investigating profiles of participation for adolescents with and without neurodevelopmental impairments could provide an understanding of which factors relate to high level of participation. The aim is to investigate trajectories of participation in everyday activities across clusters based on self-rated participation patterns in frequency of participation and perceived importance of activities related to domestic life and peer-related activities for adolescents with and without self-reported neurodevelopmental impairments.

    Methods and procedures

    A prospective person-based cohort study design.

    Outcomes and results

    Five typical trajectories were identified. Trajectories between clusters with high perceived involvement in peer relations were associated with sibling support and family communication. Self-reported neurodevelopmental impairments did not predict participation profiles at certain time points, nor movements between clusters when measuring self-reported attendance and importance in domestic life and in peer-related activities.

    Conclusion and implications

    Perceived sibling support and family communication are important for predicting typical trajectories across clusters in frequency of attendance and the perceived importance of domestic life and peer relations. Type of impairment was less important in predicting typical trajectories.

  • 46.
    Møller Christensen, Berit
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dept. of Natural Science and Biomedicine. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dept. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Almqvist, Lena
    Jönköping University, School of Education and Communication, HLK, CHILD. School of Health, Care and Social Welfare, Mälardalen University, Västerås, Sweden.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Dept. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Patterns of support to adolescents related to disability, family situation, harassment, and economy2019In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 45, no 5, p. 644-653Article in journal (Refereed)
    Abstract [en]

    INTRODUCTION: Adolescents need support from family, friends, and teachers to increase their involvement in everyday life. Their environment and their own characteristics also influence their ability to participate in an everyday supportive environment.

    AIM: The aim of the study was to investigate patterns of support from parents, teachers, and very important persons such as peers to the ability of adolescents to participate in everyday life, as well as the importance of interpersonal relations as experienced by the adolescents.

    METHOD: The study has a cross-sectional design. The data compiled and analysed in this study are part of a longitudinal study of adolescents and their development into adults-LoRDIA (Longitudinal Research on Development In Adolescence). A combination of person- and variable-oriented design was used to capture patterns of support.

    RESULTS: Adolescents with a complicated home situation and low economic prerequisites who received little support from parents and friends participated to a lower degree in home activities. A substantial number of these adolescents had self-reported neurodevelopmental disorders and, as a group, were more often exposed to harassment. However, these adolescents participated to a higher extent in school activities, although they received little support from the teachers. The adolescents who received most support from parents and teachers were those with a country of origin other than Sweden and those who lived with both of their parents and had more siblings than average. However, this did not mean that they participated to a higher extent in home and school activities.

  • 47.
    Nilsson, Stefan
    et al.
    School of Health Sciences, Borås University, Borås, Sweden.
    Björkman, Berit
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Almqvist, Anna-Lena
    School of Health, Care and Social Welfare, Mälardalen University, Sweden.
    Almqvist, Lena
    School of Health, Care and Social Welfare, Mälardalen University, Sweden.
    Björk-Willén, Polly
    Department of Social and Welfare Studies, Linköping University, Linköping, Sweden.
    Donohue, Dana
    Centre for AAC, University of Pretoria, South Africa.
    Enskär, Karin
    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. 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.
    Hvit, Sara
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Children’s voices – Differentiating a child perspective from a child’s perspective2015In: Developmental Neurorehabilitation, ISSN 1751-8423, E-ISSN 1751-8431, Vol. 18, no 3, p. 162-168Article in journal (Refereed)
    Abstract [en]

    Objective: The aim of this paper was to discuss differences between having a child perspective and taking the child's perspective based on the problem being investigated.

    Methods: Conceptual paper based on narrative review.

    Results: The child's perspective in research concerning children that need additional support are important. The difference between having a child perspective and taking the child's perspective in conjunction with the need to know children's opinions has been discussed in the literature. From an ideological perspective the difference between the two perspectives seems self-evident, but the perspectives might be better seen as different ends on a continuum solely from an adult's view of children to solely the perspective of children themselves. Depending on the research question, the design of the study may benefit from taking either perspective. In this article, we discuss the difference between the perspectives based on the problem being investigated, children's capacity to express opinions, environmental adaptations and the degree of interpretation needed to understand children's opinions.

    Conclusion: The examples provided indicate that children's opinions can be regarded in most research, although to different degrees.

  • 48.
    Odzakovic, Elzana
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. ADULT. Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Ahlberg, Beth Maina
    Department of Sociology, Uppsala University, Uppsala, Sweden.
    Bradby, Hannah
    Department of Sociology, Uppsala University, Uppsala, Sweden.
    Hamed, Sarah
    Department of Sociology, Uppsala University, Uppsala, Sweden.
    Thaper-Björkert, Suruchi
    Department of Government, Uppsala University, Uppsala, Sweden.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Discussing racism in healthcare: A qualitative study of reflections by graduate nursing students2023In: Nursing Open, E-ISSN 2054-1058, Vol. 10, no 6, p. 3677-3686Article in journal (Refereed)
    Abstract [en]

    Aim: The aim is to illustrate and analyse reflections from graduate nursing students over their experience of discussing racism in healthcare in an educational intervention.

    Design: A qualitative, descriptive design was adopted.

    Methods: Data were collected through written reflections and analysed through content analysis. In total, 81 students participated in the intervention; 39 paediatric and 42 public health care nursing students. Of those, 27 participants gave consent to have their written reflections included in the study.

    Results: Three main categories were developed in the content analysis of student reflections: (a) the implicit embeddedness of racism in healthcare organization; (b) the effect of racism on interactions with patients; and (c) a growing awareness of one's own understanding of racism. This study indicates that student nurses discussed racism as relevant to understanding good clinical practice for the benefit of patients and work-based wellbeing of staff. This recognition of the organizational nature of racism warrants nursing leaders and managers to include racism as a social determinant of health in the undergraduate and graduate curricula to educate the next generation of nursing about racism.

  • 49.
    Olsson, Lena
    et al.
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Bengtsson, Staffan
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Behavioural Science and Social Work.
    Granlund, Mats
    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 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.
    Elgmark Andersson, Elisabeth
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Rehabilitation. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Kåreholt, Ingemar
    Jönköping University, School of Health and Welfare, HHJ, Institute of Gerontology.
    Integration of pupils with mild intellectual disability in mainstream school settings - goog or bad for social service utilisation? A longitudinal study among children with mild intellectual disability in SwedenManuscript (preprint) (Other academic)
  • 50.
    Olsson, Lena
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Bengtsson, Staffan
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Social Work. Jönköping University, School of Health and Welfare, HHJ. SALVE (Social challenges, Actors, Living conditions, reseach VEnue). 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.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Elgmark Andersson, Elisabeth
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Rehabilitation. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    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).
    Social service utilisation in relation to class setting - a longitudinal study among children with mild intellectual disability in Sweden2020In: European Journal of Special Needs Education, ISSN 0885-6257, E-ISSN 1469-591X, Vol. 35, no 4, p. 544-558Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to investigate if the type of class setting is related to the utilisation of disability-related services and child welfare services outside school over time among children with mild intellectual disability (ID). A quantitative study with a longitudinal and comparative design was carried out including data from archival records concerning service utilisation among 405 children. Children in special classes were more likely than children integrated into regular classes to utilise disability-related services. Integrated children who changed school setting from regular classes to special classes were more likely to begin to utilise such services and to increase the number of services utilised, compared to children who remained integrated. Professionals in social services and schools may need to improve their collaboration around families of children with mild ID when assessing needs and providing services. Special attention may need to be devoted to children integrated into regular classes.

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