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  • 101.
    Steel, Emily
    et al.
    School of Business, The University of Queensland, St Lucia, Brisbane, Australia; Recover Injury Research Centre, School of Human Services and Social Work, Griffith University, Meadowbrook, Logan, Australia.
    Janeslätt, Gunnel
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Center for Clinical Research Dalarna.
    Drafting standards on cognitive accessibility: a global collaboration2017In: Disability and Rehabilitation: Assistive Technology, ISSN 1748-3107, E-ISSN 1748-3115, Vol. 12, no 4, p. 385-389Article in journal (Refereed)
    Abstract [en]

    Purpose: The International Organization for Standardization (ISO) is working on accessibility of products to support people with cognitive impairment. Working Group 10, within the technical committee 173 (assistive products for persons with disability) was formed in 2014 to draft standards for assistive products that support people with cognitive impairment. Method: This article explains the scope and purpose of the working group and the context for its formation, and describes the plans and process for drafting and publishing new international standards. Results: The proposed suite of standards is presented, with examples from a draft standard on daily time management. It draws on international research evidence for the effectiveness of assistive products designed to support time management in people with cognitive impairment. Examples of assistive products and their key features are provided based on domains of time as defined in the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY). Conclusions: The proposed standards will provide design recommendations for features and functions that increase the accessibility of products used by people with cognitive impairment. They are intended to be used by designers, manufactures, educators and services providers, to facilitate their commitment to inclusion and demonstrate their willingness to work with accessibility regulation.

  • 102.
    Stenhammar, Christina
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Olsson, Gunilla Maria
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Habilitation and Disability. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience.
    Bahmanyar, S
    Clinical Epidemiology Unit, Karolinska Hospital, Karolinska Institutet, Stockholm, Sweden.
    Hulting, A-L
    Department of Endocrinology, Metabolism and Diabetes, Karolinska University Hospital, Karolinska Institutet, Stockholm, Sweden.
    Wettergren, Björn
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Edlund, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Montgomery, S M
    Department of Endocrinology, Metabolism and Diabetes, Karolinska University Hospital, Karolinska Institutet, Stockholm, Sweden.
    Family stress and BMI in young children2010In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 99, no 8, p. 1205-1212Article in journal (Refereed)
    Abstract [en]

    Aim: The aim of this study was to investigate if family stress and parental attachment style are associated with body mass index (BMI) in young children, and identify possible explanations. Methods: A cross-sectional survey with a two-stage design was used. Parents of 873 children participated. They completed a demographic questionnaire, the Swedish Parenthood Stress Questionnaire (SPSQ), the Relationship Questionnaire (RQ) and reported their children's television-viewing habits (as a marker of physical activity). Children's height, weight and BMI were obtained from a general population-based register, BASTA. Associations with over- and underweight in children were assessed using multiple logistic regression analysis. Results: Family stress indicated by SPSQ-score was associated with suboptimal BMI. Maternal, but not paternal, SPSQ-stress score was statistically significantly associated with overweight and underweight, with adjusted odds ratios (and 95% confidence interval) of 4.61 (3.11-6.84; p < 0.001) and 3.08 (1.64-5.81; p < 0.001) respectively. Associations between childhood BMI and parental attachment style were identified, but were not independent of maternal SPSQ-score. Conclusion: Our findings support a role for family stress in development of both overweight and underweight among young children. This is likely to be attributed to behavioural mechanisms but a more direct metabolic influence of stress could also be involved.

  • 103.
    Tegler, Helena
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Uppsala County Council.
    Pless, Mia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    Blom Johansson, Monica
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Logopedi.
    Sonnander, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    Caregivers’, teachers’, and assistants’ use and learning of partner strategies in communication using high-tech speech-generating devices with children with severe cerebral palsy2019In: Assistive technology, ISSN 1040-0435, E-ISSN 1949-3614Article in journal (Refereed)
    Abstract [en]

    Communication with speech generating devices (SGDs) with children with severe physical, communicative and cognitive impairments, such as children with cerebral palsy (CP), can be difficult. Use of partner strategies facilitates the communication and instructional approaches such as feedback and role play facilitate communication partners' learning in how to use partner strategies. To describe communication partners' use and learning about partner strategies in SGD-mediated communication with children with severe CP. Questionnaires (n = 65) were sent to caregivers (n = 30), teachers (n = 17), and teaching or personal assistants (n = 18) of children with severe CP. Response rate was 80%. To ask open-ended questions was the most frequently used partner strategy and aided augmented input the least frequently used partner strategy. Most commonly, participants learned partner strategies from speech and language pathologists (SLPs) who used verbal instructions when teaching partner strategies but seldom or never feedback, role play or video examples. Communication partners' learning about partner strategies in SGD-mediated communication is inadequate and needs to be improved. SLPs, who are the main prescribers of SGDs and responsible for training and support in using them, should consider using instructional approaches when teaching communication partners about partner strategies in communication with an SGD.

  • 104.
    Tegler, Helena
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Uppsala County Council.
    Pless, Mia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    Blom Johansson, Monica
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Logopedi.
    Sonnander, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    Speech and language pathologists' perceptions and practises of communication partner training to support children's communication with high-tech speech generating devices2019In: Disability and Rehabilitation: Assistive Technology, ISSN 1748-3107, E-ISSN 1748-3115, Vol. 14, no 6, p. 581-589Article in journal (Refereed)
    Abstract [en]

    Purpose: This study examined speech and language pathologists' (SLPs') perceptions and practices of communication partner training with high-tech speech generating devices (SGDs).

    Method: Fifteen SLPs were recruited throughout Sweden. The SLPs answered a study-specific questionnaire on communication partner training in relation to communication partners to children with severe cerebral palsy and intellectual disability. The results were analysed with descriptive statistics (closed-ended questions, responses on Likert scales) and content analysis (open-ended question) using ICF-CY.

    Results: Twelve SLPs completed the survey. Half had no or one training session with communication partners in the last year. One-third never used documents for goal-setting. Half seldom or never taught communication partner strategies. Three quarters only used verbal instructions. The main obstacles were environmental factors.

    Conclusions: This study contributes valuable knowledge about high-tech SGD interventions targeting communication partners. The high-tech SGD intervention may benefit from goal-setting, extended number of training sessions and a range of instructional approaches.

  • 105.
    Terner, Annika
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    Gemensamt fackspråk, eller?: Inget gemensamt fackspråk i den elektroniska patientjournalen2013Conference paper (Other (popular science, discussion, etc.))
  • 106.
    Terner, Annika
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    Predefined Headings in a Multi-professional Electronic Health Record: Professionals’ Application, Aspects of Health and Health Care and Correspondence to Legal Requirements2014Licentiate thesis, comprehensive summary (Other academic)
    Abstract [en]

    The overall aim of this thesis was to investigate predefined headings in a Swedish county council multi-professional EHR system in terms of their shared application, what aspects of health and health care they reflected, and their correspondence to legal requirements. An analysis of 3 596 predefined headings, applied to 20 398 104 occasions by eight professional groups, was conducted. Less than 2% of the predefined headings were applied by all eight professional groups, whereas 60% were not shared at all between the professional groups. A classification of the predefined headings revealed that 13% were “Specialist terms”, which were the least ambiguous predefined headings, 46% were “Terms for specific purposes”, which are less ambiguous than the “Common words” (28%), which were the most ambiguous predefined headings according to the sociolinguistic method employed. The remaining predefined headings (13%) were sorted into “Unclassified headings”. A qualitative content analysis of the predefined headings yielded 23 subcategories grouped into five categories: Description of the patient, Health care process, Resources employed, Administrative documentation, and Development and research. A comparison of the 23 subcategories to the Patient Data Act showed, first, that 15 of 23 subcategories corresponded to four legal requirements, second, that there were legal requirements with a focus on patient rights that were not being met, and third, that there were eight subcategories of predefined headings that could not be attributed to the legal provisions of the Patient Data Act. In conclusion, the proportion of shared predefined headings in the EHRs was limited. The predefined headings in the multi-professional EHRs did not constitute a joint language for specific purposes. A meaningful structure comprising categories and subcategories of different aspects of health and health care as reflected in the applied predefined headings was identified. The structure reflected a wide range of health and health care. No subcategory corresponded to the three legal requirements concerning patient rights. Future research should include professionals’ and patients’ understanding of predefined headings, the correspondence of documented notes to predefined headings and how the documentation in the EHR has had an impact on patient safety.

    List of papers
    1. A Retrospective Analysis of Health, Health Care, and Legal Requirements as Reflected in Predefined Headings in an EHR
    Open this publication in new window or tab >>A Retrospective Analysis of Health, Health Care, and Legal Requirements as Reflected in Predefined Headings in an EHR
    2015 (English)In: Electronic Journal of Health Informatics, ISSN 1446-4381, E-ISSN 1446-4381, Vol. 9, no 1, article id e9Article in journal (Refereed) Published
    Abstract [en]

    Objectives

    To study health, health care, and legal requirements as reflected in predefined headings that were applied by users in a Swedish multi-professional electronic health record (EHR).

    Methods

    Predefined headings (n = 3 596) applied to 20 398 104 occasions by health care professionals in a module for care documentation in an EHR were analysed. A conventional qualitative content analysis was used to explore health and health care as reflected in the predefined headings. Furthermore, a comparison was made between the health and health care aspects and the Swedish Patient Data Act (PDA) to examine whether the aspects corresponded to legal requirements.

    Results

    The analysis yielded a meaningful structure that included five categories and 23 subcategories. The categories were Description of the patient, Health care process, Resources employed, Administrative documentation, and Development and research. Of the 23 subcategories, 15 corresponded to four of the seven legal requirements in the PDA. No corresponding subcategories were observed for three of the legal requirements.

    Conclusions

    The predefined headings of the multi-professional EHR were possible to analyse and categorise. The analysis showed that the headings reflected a wide range of health and health care and that synonyms or similar terms occurred as headings. The majority of the subcategories corresponded to the legal requirements of the PDA. The legal requirements that referred to patient rights did not have any corresponding subcategory. Subcategories that were found and that concerned goals to be attained and intervention outcomes were not explicitly expressed as legal requirements in the PDA

    Keywords
    Documentation, Electronic Health Records, Legislation, Qualitative content analysis
    National Category
    Other Medical Sciences not elsewhere specified
    Research subject
    Medical Science
    Identifiers
    urn:nbn:se:uu:diva-246852 (URN)000359655800009 ()
    Available from: 2015-03-11 Created: 2015-03-11 Last updated: 2017-12-04Bibliographically approved
    2. Predefined headings in a multiprofessional electronic health record system
    Open this publication in new window or tab >>Predefined headings in a multiprofessional electronic health record system
    2012 (English)In: JAMIA Journal of the American Medical Informatics Association, ISSN 1067-5027, E-ISSN 1527-974X, Vol. 19, no 6, p. 1032-1038Article in journal (Refereed) Published
    Abstract [en]

    BackgroundApplying multiprofessional electronic health records (EHRs) is expected to improve the quality of patient care and patient safety. Both EHR systems and system users depend on semantic interoperability to function efficiently. A shared clinical terminology comprising unambiguous terms is required for semantic interoperability. Empirical studies of clinical terminology, such as predefined headings, in EHR systems are scarce and limited to one profession or one clinical specialty.ObjectiveTo study predefined headings applied by users in a Swedish multiprofessional EHR system.Materials and methodsThis was a descriptive study of predefined headings (n=3596) applied by 5509 users in a Swedish multiprofessional EHR system. The predefined headings were classified into four term and word categories.ResultsLess than half of the predefined headings were shared by two or more professional groups. All eight professionals groups shared 1.7% of the predefined headings. The distribution of predefined headings across categories yielded two-thirds "terms for special purposes" and "specialist terms" and one-third "common words" and "unclassified headings".DiscussionThe indicated presence of profession-specific predefined headings and the conflict between ambiguity and comprehension of terms and words used as headings are discussed.ConclusionsThe predefined headings in the multiprofessional EHR system studied did not constitute a joint language for specific purposes. The improvement of the quality and usability of multiprofessional EHR systems requires attention.

    Keywords
    Medical records, Health occupations, Terminology, Documentation
    National Category
    Other Medical Sciences not elsewhere specified
    Research subject
    Medical Science
    Identifiers
    urn:nbn:se:uu:diva-178044 (URN)10.1136/amiajnl-2012-000855 (DOI)000310408500017 ()22744962 (PubMedID)
    Available from: 2012-07-24 Created: 2012-07-24 Last updated: 2017-12-07Bibliographically approved
  • 107.
    Terner, Annika
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    Halilovic, Amra
    Landstinget i Dalarna.
    Predefined Headings as a Base for Intellectual Capital in Swedish Health Care Sector2017In: International Journal of Biology and Biomedicine, ISSN 2367-9085, Vol. 2, p. 29-35Article in journal (Refereed)
    Abstract [en]

    The health care sector is a knowledge-intensive sector with valuable assets. This stock of knowledge is defined as intellectual capital. Management of intellectual capital in the health care sector faces several challenges; particularly challenging is the lack of integration between the different IT systems and thereby the lack of integrated information. Semantic interoperability allows the right information to be available to the right people at the right time across systems. Structured and standardized predefined headings can be a tool to enable semantic interoperability. The aim of this article is to argue that predefined headings are an expression of knowledge-based healthcare and therefore can be a base for intellectuell capital in the Swedish health care sector. Predefined headings are employed in both electronic health records and in national quality registries. National quality registries are sources of “knowledge of improvement” because they contain data integrated into clinical workflows which, after analysis, can lead to documented evidence-based practice and practicebased evidence. The predefined headings in national quality registries are expressions of important indicators to follow up. The source for the data in national quality registries is data registered in patients’ electronic health records. The predefined headings in electronic health records are expressions of knowledge and experience of what information is necessary to provide good health care. Consequently, predefined headings are expressions of knowledge-based healthcare and can therefore be a base for intellectual capital in the Swedish health care sector.

  • 108.
    Terner, Annika
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    Lindstedt, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    Pless, Mia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    Sonnander, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    A Retrospective Analysis of Health, Health Care, and Legal Requirements as Reflected in Predefined Headings in an EHR2015In: Electronic Journal of Health Informatics, ISSN 1446-4381, E-ISSN 1446-4381, Vol. 9, no 1, article id e9Article in journal (Refereed)
    Abstract [en]

    Objectives

    To study health, health care, and legal requirements as reflected in predefined headings that were applied by users in a Swedish multi-professional electronic health record (EHR).

    Methods

    Predefined headings (n = 3 596) applied to 20 398 104 occasions by health care professionals in a module for care documentation in an EHR were analysed. A conventional qualitative content analysis was used to explore health and health care as reflected in the predefined headings. Furthermore, a comparison was made between the health and health care aspects and the Swedish Patient Data Act (PDA) to examine whether the aspects corresponded to legal requirements.

    Results

    The analysis yielded a meaningful structure that included five categories and 23 subcategories. The categories were Description of the patient, Health care process, Resources employed, Administrative documentation, and Development and research. Of the 23 subcategories, 15 corresponded to four of the seven legal requirements in the PDA. No corresponding subcategories were observed for three of the legal requirements.

    Conclusions

    The predefined headings of the multi-professional EHR were possible to analyse and categorise. The analysis showed that the headings reflected a wide range of health and health care and that synonyms or similar terms occurred as headings. The majority of the subcategories corresponded to the legal requirements of the PDA. The legal requirements that referred to patient rights did not have any corresponding subcategory. Subcategories that were found and that concerned goals to be attained and intervention outcomes were not explicitly expressed as legal requirements in the PDA

  • 109.
    Terner, Annika
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    Lindstedt, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    Sonnander, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    Pre-defined Headings in a Multiprofessional Electronic Health Record System2012In: Scandinavian Conference onHealth Informatics 2012October 2–3 oktober, Linköping, Sverige / [ed] Karlsson, Daniel ; Bellika, Johan Gustav ; Elberg, Pia Britt ; Fossum, Mariann ; Galster, Gert ; Hartvigsen, Gunnar ; Koch, Sabine ; Nilsson, Gunilla, Linköping, 2012, Vol. 19, no 6, p. 61-61Conference paper (Refereed)
    Abstract [en]

    Background Applying multiprofessional electronic health records (EHRs) is expected to improve the quality of patient care and patient safety. Both EHR systems and system users depend on semantic interoperability to function efficiently. A shared clinical terminology comprising unambiguous terms is required for semantic interoperability. Empirical studies of clinical terminology, such as predefined headings, in EHR systems are scarce and limited to one profession or one clinical specialty.

    Objective To study predefined headings applied by users in a Swedish multiprofessional EHR system.

    Materials and methods This was a descriptive study of predefined headings (n=3596) applied by 5509 users in a Swedish multiprofessional EHR system. The predefined headings were classified into four term and word categories.

    Results Less than half of the predefined headings were shared by two or more professional groups. All eight professionals groups shared 1.7% of the predefined headings. The distribution of predefined headings across categories yielded two-thirds “terms for special purposes” and “specialist terms” and one-third “common words” and “unclassified headings”.

    Discussion The indicated presence of profession-specific predefined headings and the conflict between ambiguity and comprehension of terms and words used as headings are discussed.

    Conclusions The predefined headings in the multiprofessional EHR system studied did not constitute a joint language for specific purposes. The improvement of the quality and usability of multiprofessional EHR systems requires attention.

  • 110.
    Tollerz, Linda. U. Bratteby
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Nutrition and Metabolism.
    Forslund, Anders H.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Cell Biology.
    Olsson, Roger. M.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Nutrition and Metabolism.
    Lidström, Helene
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics. Linkoping Univ, Dept Social & Welf Studies, Norrkoping, Sweden..
    Holmbäck, Ulf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Nutrition and Metabolism.
    Children with cerebral palsy do not achieve healthy physical activity levels2015In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 104, no 11, p. 1125-1129Article in journal (Refereed)
    Abstract [en]

    AimThis study compared daily activity energy expenditure (AEE) in children with cerebral palsy with a control group and investigated whether the children achieved healthy levels of physical activity. MethodsWe enrolled eight children with bilateral cerebral palsy, from eight to 10years of age, and a group of controls matched for age and gender. For three days, physical activity was simultaneously measured by accelerometers and self-reports using a diary. The daily AEE results were compared between groups and methods. The number of children that achieved healthy physical activity levels in each group was explored. ResultsChildren with cerebral palsy had significantly lower daily AEE, as measured by accelerometers, than the controls, and they did not achieve the healthy moderate to heavy physical activity level defined in the Nordic Nutrition Recommendations. Self-reports using the diaries resulted in an overestimation of physical activity compared with the ankle accelerometer measurements in both groups. ConclusionOur investigation of physical activity in children with cerebral palsy and controls using accelerometers and a diary found low levels of daily AEE and physical activity, and these results were most prominent in the group with cerebral palsy. The diaries overestimated physical activity in both groups.

  • 111.
    Townend, Gillian
    et al.
    Rett Expertise Centre - GKC, Maastricht University Medical Centre, Maastricht, The Netherlands.
    Wandin, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    Curfs, Leopold
    Rett Expertise Centre - GKC, Maastricht University Medical Centre, Maastricht, The Netherlands.
    Development of Clinical Guidelines for the Management of Communication in Individuals with Rett syndrome2015Conference paper (Refereed)
  • 112.
    Umb-Carlsson, Õie
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Habilitation and Disability.
    A comparison of the living conditions of women and men with intellectual disabilities in a Swedish county population and in the general population2007Conference paper (Refereed)
  • 113.
    Umb-Carlsson, Õie
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    Changes in living conditions of people with intellectual disability: A Follow Up After 15 Years2018In: JARID: Journal of applied research in intellectual disabilities, ISSN 1360-2322, E-ISSN 1468-3148, Vol. 31, no 4, p. 483-484Article in journal (Other academic)
  • 114.
    Umb-Carlsson, Õie
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Habilitation and Disability.
    Public special services provided to people with intellectual disabilities in Sweden: A life-span perspective2008In: Journal of Policy and Practice in Intellectual Disabilities, ISSN 1741-1122, E-ISSN 1741-1130, Vol. 5, no 4, p. 237-244Article in journal (Refereed)
    Abstract [en]

    This study describes public special services, support, and health care provided to an administratively defined county sample of people with intellectual disabilities from early childhood to adult age. Comparisons were made on the variables year of birth, sex, and assessed level of intellectual disabilities in 1974. Information was obtained from case files and included the period from year of birth of the participants (between 1959 and 1974) to 2005. All participants were provided public special services, support, and health care either periodically or throughout the study period. Changes in legislation were reflected in the type of services, support, and health care provided to the target group. Type and amount of special services and support were related to year of birth. Only a few differences were related to sex and level of intellectual disabilities. These results indicate that public special services, support, and health care provided to people with intellectual disabilities reflect disability policy, legislation, and professional attitudes over different periods. It is suggested that measures were tailored to meet general needs considered to be shared by all people with intellectual disabilities rather than individual choices and wishes. The interaction among professionals emerged only to a limited extent. However, deficient information in the case files does not imply absence of contact between professional groups, but, if continuity in services, support, and health care is to be attained, significant improvement in documentation is required.

  • 115.
    Umb-Carlsson, Õie
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Habilitation and Disability.
    Studier om hälsa för personer med utvecklingsstörning2008Report (Other academic)
  • 116.
    Umb-Carlsson, Õie
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Habilitation and Disability.
    Understanding quality of life from the perspective of women and men with intellectual disability ( Conference abstract ), International Association on the Scientific Study of Intellectual Disability (IASSID), Cape Town,: South Africa2008Conference paper (Refereed)
  • 117.
    Umb-Carlsson, Õie
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Habilitation and Disability.
    Understanding the quality of life from the perspective of people with intellectual disability2009Conference paper (Other academic)
  • 118.
    Umb-Carlsson, Õie
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation. Res & Dev Sormland, Eskilstuna, Sweden.
    Adolfsson, Päivi
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Centre for Disability Research. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    Quality of Life Is to Experience Adult Social Status2018In: Journal of Policy and Practice in Intellectual Disabilities, ISSN 1741-1122, E-ISSN 1741-1130, Vol. 15, no 4, p. 272-283Article in journal (Refereed)
    Abstract [en]

    Quality of life (QoL) has become an important outcome in evaluations of services and support for people with intellectual disabilities (ID). Many people with ID request more say and want to be involved in the development of services and support provision. The original Uppsala QoL (UQoL) model consists of a general essence and hierarchically ordered themes and describes QoL from the perspective of people with ID through individual interviews. The aim of the present study is to examine the UQoL regarding its inherent component parts and to explore the interrelationship between them. The study contributes to the understanding of the concept of QoL from the perspective of people with ID. Focus group interviews were conducted with people with mild and moderate ID. The results indicate that QoL is to experience well-being. The key component of QoL is to experience adult social status. which is determined by whether the individual experiences having control of their life, experiences a sense of personal safety and feels social belonging. In concordance with the original model, the UQoL2 is mainly made up of components equivalent to those frequently reported in the QoL literature. Nevertheless, some differences require attention. The primary component, adult social status, has not previously been highlighted in the QoL literature. The point of departure in the UQoL model is the users ' perspective rather than the user perspective as perceived by professionals or researchers. The UQoL is not primarily linked to the quality of service provision, but to peoples' daily life. A revised version of the original UQoL is suggested. Unlike the original model, other than the fact which that adult social status is superior, the components are not hierarchically organized, rather the interrelation between them is emphasized.

  • 119.
    Umb-Carlsson, Õie
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Habilitation and Disability.
    Jansson, Lennart
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Psychiatry, Ulleråker, University Hospital.
    Support in Housing: A Comparison Between People with Psychiatric Disabilities and People with Intellectual Disabilities2009In: Community mental health journal, ISSN 0010-3853, E-ISSN 1573-2789, Vol. 45, no 6, p. 420-426Article in journal (Refereed)
    Abstract [en]

    The primary objective of this study was to compare type of housing and support in housing in two groups (people with psychiatric disabilities and people with intellectual disabilities) typically dependent on support in everyday life. A second objective was to examine whether type of housing and support in housing were related to gender within the two groups. Information was obtained by available questionnaire reports provided by staff members. The results indicate unequal accessibility of support in housing in relation to the two groups. Moreover, the findings suggest that type of disability is a more determining factor than gender regarding support in housing.

     

  • 120.
    Umb-Carlsson, Õie
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    Lindstedt, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    The prerequisites for QoL of people with intellectual disabilities2011In: Scandinavian Journal of Disability Research, ISSN 1501-7419, E-ISSN 1745-3011, Vol. 13, no 4, p. 241-253Article in journal (Refereed)
    Abstract [en]

    Quality of life (QoL) is seldom described in terms of the essence of what it is.Also, an essential task for the research community is to create space for the voicesof people with intellectual disabilities. The aim of the present study was tounderstand the lived meaning and the essence of QoL in adults with thisdisability. Using a phenomenological approach, 21 informants living in a Swedishcounty were interviewed. The interviews were audio taped and analyzed with theempirical phenomenological psychological method. The results indicate that thegeneral essence of QoL consists of well-being and five themes: social adult status,control of life, personal safety, social belonging and self-chosen solitude. Theresults challenge the stereotype of the informants as passive receivers of supportfrom others. The interrelatedness between the five themes of QoL should befurther studied.

  • 121.
    Umb-Carlsson, Õie
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience.
    Sonnander, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Habilitation and Disability.
    Comparison of reports by relatives and staff on living conditions of adults with intellectual disabilities2006In: Mental retardation (Washington, D.C. Print), ISSN 0047-6765, Vol. 44, no 2, p. 120-127Article in journal (Refereed)
    Abstract [en]

    Proxies typically serve as information providers in studies of persons with intellectual disabilities. However, little is known about the concordance between different proxy categories and how proxy characteristics influence the information provided. We compared 89 pairs of relative and staff reports on the living conditions of persons with intellectual disabilities, using percentage agreement and Cohen's kappa statistics. Results demonstrate differences between relative and staff reports for most of the domains investigated, with moderate agreement for objective items and fair agreement for subjective items. Relative and staff proxies contributed different information related to diverse viewpoints and varying types of information. Thus, we suggest that information provided by proxies should not be treated as being interchangeable but, rather, as complementary.

  • 122.
    Umb-Carlsson, Õie
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Psychiatry, Ulleråker, University Hospital.
    Sonnander, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Habilitation and Disability.
    Living conditions of adults with intellectual disabilities from a gender perspective2006In: Journal of Intellectual Disability Research, ISSN 0964-2633, E-ISSN 1365-2788, Vol. 50, no 5, p. 326-334Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The role of gender has been a neglected issue in research on intellectual disability (ID). People with ID are generally treated as a homogenous group that are largely categorized by their level of ID. This study compared living conditions of women and men with ID and related the results to similarities and differences among the general population in corresponding age groups. METHODS: Persons with ID born in Uppsala County between 1959 and 1974 constituted the study sample. Information on the living conditions of 110 persons with ID was collected using questionnaires completed by relatives and staff. Information on living conditions of the general population was obtained through national welfare statistics conducted by Statistics Sweden (SCB). RESULTS: In both samples corresponding diversities were revealed for type of employment/daily activities, where women worked in traditional female job sectors and men were occupied with traditional male jobs. Women and men with ID participated to about the same extent in recreational and cultural activities and on only four of the 19 activities listed in the questionnaire (visits to the cinema and library, reading books and practising hobbies alone) significant differences were observed. Among women and men in the general population, we found gender-related differences in 13 of the activities listed. However, with the exception of women more frequently visiting the library and reading books, the two samples demonstrated no corresponding gender-related differences. For the remaining six domains (finances, family and social relations, housing, transport, community participation and personal safety), no differences were noted between women and men with ID. This finding contrasted sharply with the differences found between women and men in the general population. CONCLUSIONS: Surprisingly, the comparison yielded few differences in living conditions between women and men with ID compared with those found in women and men of the general population. This finding suggests that people with ID were treated as gender-neutral persons rather than as women and men with individual preferences and needs. Thus, it appears that having ID is a more important determinant than gender regarding living conditions for women and men with ID.

  • 123.
    Umb-Carlsson, Õie
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    Wadensten, Barbro
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Professional practice‐related training and organizational readiness for change facilitate implementation of projects on the national core value system in care of older people2018In: Nursing Open, E-ISSN 2054-1058, Vol. 5, no 4, p. 593-600Article in journal (Refereed)
    Abstract [en]

    Aim: To explore whether professional training contributed to implementation of the national core value system in practice in care of older people and to identify course participants' perceptions about factors that facilitated or obstructed them in implementing their projects. To identify participants' perceptions concerning factors that facilitate or obstruct implementation.

    Design: Descriptive and cross‐sectional.

    Methods: Data were retrieved from 451 participants who had completed the course “Understanding and providing leadership based on the national core value system for older people” at Uppsala University during spring semester and autumn semester of 2018. Quantitative and qualitative data were obtained using a web‐based questionnaire.

    Results: The results showed that the majority (73%) of project plans were initiated, although not always completed and sometimes interrupted. Organizational readiness in terms of management supporting and prioritizing these plans were two principle facilitators chosen by half of the respondents and consequently the absence of these factors was an obstacle. In addition, successful implementation required dedicated co‐workers and certain resources, such as time and funds. Surprisingly, factors related to the project leader were reported to be of limited importance.

  • 124.
    Vingare, Emme-Li
    et al.
    Department of Social Work, Faculty of Social Sciences, Linnaeus University, Vaxjo, Sweden.
    Umb-Carlsson, Öie
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    Adaption to care dependency in community care2017In: Quality in Ageing and Older Adults, ISSN 1471-7794, Vol. 18, no 4, p. 246-253Article in journal (Refereed)
    Abstract [en]

    Purpose: The purpose of this paper is to explore the lived experiences of adapting to care dependency among adults receiving health and social care in ordinary housing.

    Design/methodology/approach: This was done by conducting a phenomenological study by interviewing ten adults, receiving home care services in ordinary housing.

    Findings: Participants not only adapted by becoming a “good patient” but they had four strategies they used: sociability, distance, competence and compliance, contributing to a sense of dignity and personal safety.

    Research limitations/implications: Further research is needed regarding how to preserve quality of care with adults with various ways of adapting to care dependency.

    Practical implications: The relationship between professionals and adults in care dependency is a dynamic process where a need for understanding different modes of adaptation is vital. Good treatment and quality care may be different things to different adults, depending on what aspects of the process of adaptation concern them the most, and depending on their individual adaptation strategy.

    Originality/value: This paper contributes to the understanding of modes of adaptation to care dependency from the perspective of adults indicating that working person centered may include respecting strategies not traditionally being associated with “the good patient.”

  • 125.
    von Granitz, Heléne
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Services Research.
    Reine, Ieva
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    Sonnander, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    Winblad Spångberg, Ulrika
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Services Research.
    Do personal assistance activities promote participation for persons with disabilities in Sweden?2017In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 39, no 24, p. 2512-2521Article in journal (Refereed)
    Abstract [en]

    ABSTRACT

    Purpose: To examine how the right to participation according to Article 19 of the United Nations’ Convention on the Rights of Persons with Disabilities (UNCRPD) is promoted by personal assistance use in Sweden across age, gender and eligible person categories.

    Method: Register data and data from a questionnaire were used (N¼15,289). Principal component analysis was performed and the internal consistency was tested. Descriptive statistics (v2 test) were used across age, gender and eligible person categories and components.

    Results: An uneven distribution of personal assistance across the components Health and Care; Home, Leisure and Social Interaction; and Daily Occupation was found. Significant differences in personal assistance reported were found between children and adults, men and women and between the three eligible person categories.

    Conclusions: The discrepancy between reported and expected outcome of personal assistance indicates that Article 19 of the UNCRPD has not been met. The unequal access to participation across age, gender and eligible person categories would seem to further signify that the Act concerning Support and Service for Persons with Certain Functional Impairments is promoting activities of a caring nature rather than fulfilling Article 19 of the UNCRPD, i.e. ensuring full participation in society.

  • 126.
    Wandin, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    Alternativ kommunikation och ätsvårigheter.2012In: Barn med funktionsnedsättning. / [ed] Lagerkvist, B & Lindgren, C, Lund: Studentlitteratur AB, 2012Chapter in book (Other (popular science, discussion, etc.))
  • 127.
    Wandin, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    Alternativ kommunikation och ätsvårigheter2012In: Barn med funktionsnedsättning / [ed] Lagerkvist, B. & Lindgren, C., Lund: Studentlitteratur, 2012Chapter in book (Other (popular science, discussion, etc.))
  • 128.
    Wandin, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation. Swedish National Rett Center.
    Communication Strategies - evidence and experience2016Conference paper (Refereed)
  • 129.
    Wandin, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    Early communication intervention in Rett Syndrome2013In: 3rd European Rett Syndrome Conference / [ed] Smeets, E & Curfs, L, Maastricht: European Rett Syndrome Conference Maastricht Foundation , 2013Conference paper (Refereed)
  • 130.
    Wandin, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation. Swedish Natl Ctr Rett Syndrome & Related Disorde, Reg Jamtland Harjedalen, Ostersund, Sweden.
    Gaze-Based Assistive Technology: Usefulness in Clinical Assessments2017In: Harnessing the Power of Technology to Improve Lives / [ed] Peter Cudd, Luce de Witte, IOS Press, 2017, Vol. 242, p. 1113-1118Conference paper (Refereed)
    Abstract [en]

    Gaze-based assistive technology was used in informal clinical assessments. Excerpts of medical journals were analyzed by directed content analysis using a model of communicative competence. The results of this pilot study indicate that gaze-based assistive technology is a useful tool in communication assessments that can generate clinically relevant information.

  • 131.
    Wandin, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    Logopeders erfarenheter av kommunikationsinsatser vid Rett syndrom2015In: Abstract katalog, 2015Conference paper (Refereed)
  • 132.
    Wandin, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    Språk hos barn med funktionsnedsättning2012In: Barn med funktionsnedsättning / [ed] Lagerkvist, B. & Lindgren, C., Lund: Studentlitteratur, 2012Chapter in book (Other (popular science, discussion, etc.))
  • 133.
    Wandin, Helena
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    Bergström-Isacsson, Märith
    Nationellt Rett Center, Östersund, Sverige.
    Activities for interaction; examples of groupactivities with special focus on communcation with PODD (Pragmatic Organisation Dynamic Displays)2015Conference paper (Refereed)
  • 134.
    Wandin, Helena
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    Lindberg, Per
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology.
    Sonnander, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Communication intervention in Rett syndrome: a survey of speech language pathologists in Swedish health services2015In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 37, no 15, p. 1324-1333Article in journal (Refereed)
    Abstract [en]

    Purpose: To investigate communication intervention that speech language pathologists (SLPs) provide to people with Rett syndrome. Methods: A web-based survey targeting all Swedish SLPs working with people currently receiving support from habilitation services. Results: The SLPs reportedly followed recommended practice in the following aspects: (1) Information on communicative function was collected from several sources, including observation in well-known settings and reports from the client s social network, (2) Multimodal communication was promoted and, (3) Responsive partner strategies were largely targeted in the intervention. However, few instruments or standard procedures were used and partner instruction was given informally. Most SLPs used communication aids in the intervention and their general impression of using communication aids was positive. Further, augmentative and alternative communication (AAC) was estimated to increase and clarify communicative contributions from the person. Conclusions: Communication aids were reported to have a positive influence on communicative functions. Swedish SLP services followed best practice in several aspects, but there are areas with potential for development. Tools and best practice guidelines are needed to support SLPs in the AAC process for clients with Rett syndrome.

  • 135.
    Wandin, Helena
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    Sonnander, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    Lindberg, Per
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology.
    Habiliteringslogopeden i fokus: Beskrivning av kårens sammansättning och arbetsmässiga förutsättningar – resultat av en enkätstudie2015In: Logopeden, no 3, p. 18-21Article in journal (Refereed)
  • 136.
    Wandin, Helena
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    Tegler, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    What do people with severe disabilities communicate with the help of communication aids?2016In: International Conference on Cerebral Palsy and other Childhood-onset Disabilities Stockholm 1–4 June 2016, 2016Conference paper (Refereed)
  • 137.
    Wandin, Helena
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    Townend, Gillian
    eRett Expertise Centre - GKC, Maastricht University Medical Centre, Maastricht, The Netherlands.
    Tools for Assessment of Communication in Rett Syndrome2015Conference paper (Refereed)
  • 138.
    Wennberg, Birgitta
    et al.
    Linköping University, Faculty of Medicine, Department of Clinical and Experimental Medicine, Center for Social and Affective Neuroscience, Child and Adolescent Psychiatry, Linköping, Sweden.
    Janeslätt, Gunnel
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Center for Clinical Research Dalarna.
    Kjellberg, Anette
    Linköping University, Faculty of Medicine, Department of Social and Welfare Studies, Norrköping, Sweden.
    Gustafsson, Per A
    Linköping University, Faculty of Medicine, Department of Clinical and Experimental Medicine, Center for Social and Affective Neuroscience, Child and Adolescent Psychiatry, Linköping, Sweden.
    Effectiveness of time-related interventions in children with ADHD aged 9–15 years: a randomized controlled study2018In: European Child and Adolescent Psychiatry, ISSN 1018-8827, E-ISSN 1435-165X, Vol. 27, no 3, p. 329-342Article in journal (Refereed)
    Abstract [en]

    Specific problems with time and timing that affect daily routines, homework, school work, and social relations have been recognized in children with ADHD. The primary treatments for children with ADHD do not specifically focus on time-related difficulties. The aim of this randomized controlled study (RCT) was to investigate how multimodal interventions, consisting of training in time-processing ability (TPA) and compensation with time-assistive devices (TAD), affect TPA and daily time management (DTM) in children with ADHD and time difficulties, compared with only educational intervention. Thirty-eight children on stable medication for ADHD in the 9-15-year age range were randomly allocated to an intervention or a control group. The children's TPA was measured with a structured assessment (KaTid), and the children's DTM was rated by a parent questionnaire (Time-Parent scale) and by children's self-reporting (Time-Self-rating). The intervention consisted of time-skill training and compensation with TAD. Data were analysed for differences in TPA and in DTM between the control and intervention groups in the 24-week follow-up. Children in the intervention group increased their TPA significantly (p = 0.019) more compared to the control group. The largest increase was in orientation to time. In addition, the parents in the intervention group rated their children's DTM as significantly (p = 0.01) improved compared with the parents in the control group. According to the children, their DTM was not significantly changed. In conclusion, a multimodal intervention consisting of time-skill training and TAD improved TPA and DTM in children with ADHD aged 9-15 years.

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