Digitala Vetenskapliga Arkivet

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  • 1.
    Chadwick, D.
    et al.
    School of Psychology, Faculty of Education, Health and Wellbeing, The University of Wolverhampton, Wolverhampton, UK.
    Ågren, K.A.
    Department of Health, Medicine and Caring Sciences (HMV), Linköping University, Linköping, Sweden.
    Caton, S.
    Faculty of Health, Psychology and Social Care, Manchester Metropolitan University, Manchester, UK.
    Chiner, E.
    Health Psychology, Faculty of Education, University of Alicante, Alicante, Spain.
    Danker, J.
    School of Education, University of New South Wales, Sydney, Australia.
    Gómez-Puerta, M.
    Health Psychology, Faculty of Education, University of Alicante, Alicante, Spain.
    Heitplatz, V.
    Rehabilitation Technology, TU Dortmund University, Dortmund, Germany.
    Johansson, Stefan
    KTH, School of Electrical Engineering and Computer Science (EECS), Human Centered Technology, Media Technology and Interaction Design, MID.
    Normand, C. L.
    Department of Psychoeducation, Université du Québec en Outaouais, Gatineau, Canada.
    Murphy, E.
    Trinity Centre for Ageing and Intellectual Disability, Trinity College Dublin, Dublin, Ireland.
    Plichta, P.
    Institute of Pedagogy, The University of Wrocław, Wrocław, Poland.
    Strnadová, I.
    School of Education, University of New South Wales, Sydney, Australia.
    Wallén, E. F.
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Solna, Sweden.
    Digital inclusion and participation of people with intellectual disabilities during COVID-19: A rapid review and international bricolage2022In: Journal of Policy and Practice in Intellectual Disabilities, ISSN 1741-1122, E-ISSN 1741-1130, Vol. 19, no 3, p. 242-256Article in journal (Refereed)
    Abstract [en]

    The COVID-19 pandemic has meant a rapid transfer of everyday activities to the online world. Information and communication technologies (ICTs) have become more embedded than ever in people's lives. This investigation addresses how this change has affected the lives of people with intellectual disabilities (ID). A two-step design was used. A rapid review was conducted on empirical studies published between January 2019 and June 2021. Search terms related to ID, ICT use and COVID-19. A qualitative international bricolage was also conducted corresponding to author nationalities. Data gathered from the review and bricolage were analysed separately using thematic analysis and relationally synthesised. Digital solutions to provide access to COVID-19 information and guidance seemed inadequate but were seldom empirically studied. Digital poverty, literacy and exclusion remain significant issues for people with ID internationally. People and their carers experienced reduced and removed service provision, loneliness and impoverished daily lives during the pandemic; amelioration of which was facilitated by digital solutions. One solution often used was videoconferencing. Prior experience of digital participation, adequate finances, connection, support and digital literacy mentoring for both people with ID and those providing services and support facilitated digital inclusion. Digital exclusion during COVID-19 was exacerbated by sociopolitical, structural, individual and support-related barriers. Although awareness of digital exclusion appears to have been raised, the extent to which this has led to action and change remains unclear. Despite digital exclusion and digital participation benefitting continuation of life, social and emotional well-being and autonomy, COVID-19 has not provided the impetus to eradicate digital poverty for people with ID. Governmental support, digital education, creativity and problem solving are required to enable people with ID the human right to be included in the digital world at this essential time and into the future.

  • 2.
    Johansson, Stefan
    KTH, School of Electrical Engineering and Computer Science (EECS), Human Centered Technology, Media Technology and Interaction Design, MID.
    Design for Participation and Inclusion will Follow: Disabled People and the Digital Society2019Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Digitalization is rapidly taking over all aspects of society, but still there are parts of the population who have to struggle for access to, and to be able to use, the digital resources. Design processes and outcomes in the form of artefacts, that takes accessibility into account, is key to participation. This gives the designer a central role in providing for a more equal participation of all, in the digital society. The work in this thesis contributes to a better understanding of the prerequisites for participation in the digital society, and in the design processes to accomplish this, by presenting research done together with three communities: people with cognitive impairments, people with mental health issues and homeless people.

    The overall question has been How can participation in the digital society be understood? We have investigated the nature of difficulties or enabling factors for people with impairments, people with mental health issues and homeless people, when using the internet. We have also investigated possible digital divides within the groups, and how they can be explained.

    Ontologically, the work is based on an assumption that knowledge is to be found in a dialectic interplay between the material world and how we interpret what is going on in this world. The underlying epistemological assumption is that data has to be empiric, and critically interpreted in dialogue between members of the communities, which are being researched, and other stakeholders. This work draws on the idea of emancipation and that research can be liberating.

    The work also takes on a pragmatic stance. We have used adapted versions of Emancipatory Participatory Research, and of Participatory and Value Sensitive Design, thus making them accessible to people with cognitive impairments, people with mental health issues or homeless people. We have tested and adapted methods for sampling of rare populations, to enhance the quality of quantitative studies of how people with impairments and people with mental health issues have access to, and are using, the internet.

    In our research, we have found fourteen prerequisites, all of which need to be in place to provide for participation. To promote participation, we need a toolbox of methods and accessible tools. Finally, to analyse what is going on we need an analytical model which allows for analysis on multiple levels and from multiple perspectives.

    As a result, I here propose, define and position a framework for researching and understanding participation in the digital society, based on three parts: Guidelines, Ethics and Statistics. Guidelines can be understood as the theories, the regulations, the standards, etc. that inform our thinking. Ethics guide us in the right direction. Statistics make progress or lack of progress visible.

    The conclusion is: if we plan for participation - by improved statistic survey sampling methods, a participatory approach to collaborative research and in using research methods in an accessible and emancipatory way – inclusion will follow.

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  • 3.
    Johansson, Stefan
    KTH, School of Computer Science and Communication (CSC), Media Technology and Interaction Design, MID. Funka Nu AB, Sweden.
    Towards a framework to understand mental and cognitive accessibility in a digital context2016Licentiate thesis, comprehensive summary (Other academic)
    Abstract [en]

    This digitalization has in many ways contributed to greater inclusion but access to the digital community is not evenly distributed in the population, and we can see that groups of citizens do not feel involved in the transition to a digitalized society, or are not involved as much as they would actually like.

    The purpose of this thesis is to discuss how designers and developers to a greater extent can be able to take account of accessibility requirements for people with mental and cognitive impairments. The discussion is based on the study “Pilot study on accessibility of electronic communications for persons with mental disabilities”, literature reviews and my experience from almost 25 years of work in the field.

    The design and development processes I primarily want to highlight are those that produce digital products and services in what we call the mainstream.  Mainstream is the society in which we act as citizens have rights and duties, and where we should be able to realize our dreams, wishes and needs, where we find friends, family, education, livelihood and meaningfulness in the activities and the tasks we perform.

    The persons who participated in the study describe situations where:

    • Design and development processes often fail to meet the need for cognitive simplicity.
    • Many in themselves relatively simple functions, processes and activities can, used together create new and unknown difficulties.
    • Support processes malfunction.
    • Knowledge of user requirements is missing or does not reach out to the people and the processes where this knowledge would be useful.

    The people also describes that they are never involved in the design- and development processes, and that the knowledge and experience they possess is not being utilized.

    There is a need for a transfer of knowledge from the areas that produce knowledge today (rehabilitation, assistive technology, special solutions) to the mainstream. There is a need to explore and describe the knowledge and experience persons with mental and cognitive disabilities possesses. There is a need to work closely with persons who have mental and cognitive disabilities directly in mainstream-solutions in order to improve the digital society. Methods seem to be further developed on how to do this cooperation, in research, in innovation and in ordinary societal processes.

    The thesis presents a proposed framework for the design and development processes to be able to meet accessibility requirements for persons with mental and cognitive disabilities.

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    Thesis
  • 4.
    Johansson, Stefan
    et al.
    KTH, School of Electrical Engineering and Computer Science (EECS), Human Centered Technology, Media Technology and Interaction Design, MID.
    Gulliksen, Jan
    KTH, School of Electrical Engineering and Computer Science (EECS), Human Centered Technology, Media Technology and Interaction Design, MID.
    Can Mainstream Smart Technology Support Homeless People Leaving Homelessness?Manuscript (preprint) (Other academic)
    Abstract [en]

    We present a work to create a user-informed practice on how to use smart technology as support for homeless people. The practice challenge traditional methods used by the Social Service Administration, hat may have become obsolete in a digitalized society

    The paper presents and reflects on the process from initial qualitative research, over pilot testing and implementation activities up to the presentation of an implementation-handbook. The paper also presents outcomes of interventions with smart technology conducted during the pilot and implementation phase. 36 of the participating 41 homeless people reported on significant functional improvements and 12 of those labelled them as life-changing improvements.

    The unique contribution in this paper that we have presented a result on homeless people using smart technology and that such technology can be used in areas where before more costly assistive technology had to be used. Contemporary mainstream devices; smartphones, smartwatches and smart pens together with an assemblage of applications supporting cognitive needs were tested and found useable to fulfil the needs for many homeless people. The cost for such intervention is low and homeless people report on important changes in life when using smart technology. The paper also contributes by describing the Social Service Administrations struggle to adopt to a situation where homeless people want to use digital tools in the interaction.

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  • 5.
    Johansson, Stefan
    et al.
    KTH, School of Electrical Engineering and Computer Science (EECS), Human Centered Technology, Media Technology and Interaction Design, MID.
    Gulliksen, Jan
    KTH, School of Electrical Engineering and Computer Science (EECS), Human Centered Technology, Media Technology and Interaction Design, MID.
    Catharina, Gustavsson
    Center for Clinical Research Dalarna, Uppsala University, Uppsala, Sweden Nissers vag 3, SE-79182 Falun, Sweden ; School of Education, Health and Social Studies, Dalarna University, Falun, Sweden Dalarna University, SE-79188 Falun, Sweden ; Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden BMC, Box 564, SE-751 22 Uppsala, Sweden.
    Disability Digital Divide: The Use of the Internet, Smartphones, Computers and Tablets among People with Disabilities in SwedenManuscript (preprint) (Other academic)
    Abstract [en]

    Although Sweden is one of the most digitalized countries and the Swedish population’s use of the internet is among the most studied in the world, little is known about how Swedes with disabilities use internet.

    Purpose

    To describe use of and perceived difficulties in use of the internet among people with disabilities, and to explore digital divides in-between and within disability groups, and in comparison to the general population.

    Methods

    A cross-sectional survey targeting the same issues as other nationwide surveys but adapted for people with cognitive disabilities. Participants were recruited from May to October 2017 by adaptive snowball sampling. The survey comprised questions on access to and use of devices, and use of and perceived difficulties in use of internet.

    Results

    771 people responded to the survey, representing 35 diagnoses/impairments. Larger proportions of people with autism, ADHD and bipolar disorder reported using internet than other disability groups. Women with autism used the internet more than any other disability group, and women with aphasia used the internet the least. People with disabilities related to language and understanding reported more difficulties using internet than other disability groups. Larger proportions of participants than the general Swedish population, reported not feeling digitally included. In many but not all disability groups larger proportions of men than women reported not feeling digitally included.

    Conclusions

    Our findings show that there are differences in digital inclusion between sub-groups of diagnoses/impairments. Thus, disability digital divides are preferably investigated by sub-grouping disabilities, rather than studied as one homogeneous group.

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  • 6.
    Johansson, Stefan
    et al.
    KTH, School of Electrical Engineering and Computer Science (EECS), Human Centered Technology, Media Technology and Interaction Design, MID.
    Gulliksen, Jan
    KTH, School of Electrical Engineering and Computer Science (EECS), Human Centered Technology, Media Technology and Interaction Design, MID.
    Catharina, Gustavsson
    Center for Clinical Research Dalarna, Uppsala University, Uppsala, Sweden Nissers vag 3, SE-79182 Falun, Sweden ; School of Education, Health and Social Studies, Dalarna University, Falun, Sweden Dalarna University, SE-79188 Falun, Sweden ; Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden BMC, Box 564, SE-751 22 Uppsala, Sweden.
    Survey methods that enhance participation among people with disabilitiesManuscript (preprint) (Other academic)
    Abstract [en]

    Rare populations, such as people with disabilities, have been poorly represented in surveys. Research has shown that common probability sampling methods for recruitment of participants to surveys often fail to include people with disabilities. Also, that using one single “disability status” as proxy for all conditions that cause disability, restrains disaggregation into disability sub-groups.

    Purpose

    The purpose of this study was to investigate the feasibility of an adaptive snowball sampling method for recruitment of participants with disabilities and of data collection in a survey entailing thoroughly elaborated survey questions in regard to accessibility, and to describe effects on response rates and the samples’ representativeness of the entire disability populations.

    Methods

    A survey mirroring concept was used to compare a nationwide survey on internet use which applied probability sampling method, with a modified survey applying adaptive snowball sampling of people with disabilities. Questions from the mirrored survey was elaborated to increase accessibility for the target populations. Multiple channels for data collection: online, paper and telephone or face-to-face interview, were used.

    Results

    In total 771 persons participated, representing all 35 target populations. A majority responded by the online questionnaire and 57 responded by interviews. Missing response to single questions was 2.5– 6%.

    Conclusions

    Adaptive snowball sampling method was feasible to reach people with a wide range of disabilities. A modified survey targeting accessibility issues was feasible to enable participation by all target populations. The survey mirroring concept and adaptive sampling methods are suggested favourable to achieve representation of disability populations in surveys.

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  • 7.
    Johansson, Stefan
    et al.
    KTH, School of Electrical Engineering and Computer Science (EECS), Human Centered Technology, Media Technology and Interaction Design, MID.
    Gulliksen, Jan
    KTH, School of Electrical Engineering and Computer Science (EECS), Human Centered Technology, Media Technology and Interaction Design, MID.
    Gustavsson, Catharina
    Disability digital divide: the use of the internet, smartphones, computers and tablets among people with disabilities in Sweden2020In: Universal Access in the Information Society, ISSN 1615-5289, E-ISSN 1615-5297Article in journal (Refereed)
    Abstract [en]

    Although Sweden is one of the most digitalized countries and the Swedish population’s use of the internet is among the most studied in the world, little is known about how Swedes with disabilities use internet. The purpose of this study is to describe use of and perceived difficulties in use of the internet among people with disabilities and to explore digital divides in-between and within disability groups, and in comparison with the general population. This is a cross-sectional survey targeting the same issues as other nationwide surveys but adapted for people with cognitive disabilities. Participants were recruited from May to October 2017 by adaptive snowball sampling. The survey comprised questions on access to and use of devices, and use of and perceived difficulties in use of internet. A total of 771 people responded to the survey, representing 35 diagnoses/impairments. Larger proportions of people with autism, ADHD and bipolar disorder reported using internet than other disability groups. Women with autism used the internet more than any other disability group, and women with aphasia used the internet the least. People with disabilities related to language and understanding reported more difficulties using internet than other disability groups. Larger proportions of participants than the general Swedish population reported not feeling digitally included. In many but not all disability groups, larger proportions of men than women reported not feeling digitally included. Our findings show that there are differences in digital inclusion between sub-groups of diagnoses/impairments. Thus, disability digital divides are preferably investigated by sub-grouping disabilities, rather than studied as one homogeneous group. 

  • 8.
    Johansson, Stefan
    et al.
    KTH Royal Inst Technol, Sch Elect Engn & Comp Sci, S-10044 Stockholm, Sweden..
    Gulliksen, Jan
    KTH Royal Inst Technol, Sch Elect Engn & Comp Sci, S-10044 Stockholm, Sweden..
    Gustavsson, Catharina
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Disciplinary Domain of Medicine and Pharmacy, research centers etc., Center for Clinical Research Dalarna. 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. Dalarna Univ, Sch Educ Hlth & Social Studies, S-79188 Falun, Sweden..
    Disability digital divide: the use of the internet, smartphones, computers and tablets among people with disabilities in Sweden2021In: Universal Access in the Information Society, ISSN 1615-5289, E-ISSN 1615-5297, Vol. 20, p. 105-120Article in journal (Refereed)
    Abstract [en]

    Although Sweden is one of the most digitalized countries and the Swedish population's use of the internet is among the most studied in the world, little is known about how Swedes with disabilities use internet. The purpose of this study is to describe use of and perceived difficulties in use of the internet among people with disabilities and to explore digital divides in-between and within disability groups, and in comparison with the general population. This is a cross-sectional survey targeting the same issues as other nationwide surveys but adapted for people with cognitive disabilities. Participants were recruited from May to October 2017 by adaptive snowball sampling. The survey comprised questions on access to and use of devices, and use of and perceived difficulties in use of internet. A total of 771 people responded to the survey, representing 35 diagnoses/impairments. Larger proportions of people with autism, ADHD and bipolar disorder reported using internet than other disability groups. Women with autism used the internet more than any other disability group, and women with aphasia used the internet the least. People with disabilities related to language and understanding reported more difficulties using internet than other disability groups. Larger proportions of participants than the general Swedish population reported not feeling digitally included. In many but not all disability groups, larger proportions of men than women reported not feeling digitally included. Our findings show that there are differences in digital inclusion between sub-groups of diagnoses/impairments. Thus, disability digital divides are preferably investigated by sub-grouping disabilities, rather than studied as one homogeneous group.

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  • 9.
    Johansson, Stefan
    et al.
    KTH, School of Computer Science and Communication (CSC), Media Technology and Interaction Design, MID.
    Gulliksen, Jan
    KTH, School of Computer Science and Communication (CSC), Media Technology and Interaction Design, MID.
    Lantz, Ann
    KTH, School of Computer Science and Communication (CSC), Media Technology and Interaction Design, MID.
    Cognitive Accessibility for Mentally Disabled Persons2015In: Human–Computer Interaction, Springer Berlin/Heidelberg, 2015, p. 418-435Conference paper (Refereed)
    Abstract [en]

    The emergence of various digital channels, the development of different devices and the change in the way we communicate and carry out various types of services have quickly grown and continues to grow. This may offer both new opportunities for inclusion and risks for creating new barriers in the society. In a recent study we have explored the questions: Is the society digitally accessible for persons with mental disabilities? How do persons with mental disabilities cope with their situation? What are the benefits and obstacles they face? Based on the answers to these questions we wanted to explore if there is a digital divide between the citizens in general and the citizens with mental disabilities. And if so; what is the nature of this divide? Methods used in the study were Participatory action research oriented with data collection via research circles. In total over 100 persons participated. The results show that a digital divide is present. Persons with mental disabilities differ from citizens in general in how they have access to digital resources. The result also indicates that services and systems on a societal scale do not deliver the expected efficiency when it comes to supporting citizens with mental disabilities. And finally the results indicate that the special needs this group might have are often not identified in wider surveys on the citizen's use of Internet, digital services and use of different technical devices. Several of the participants describe this as being left outside and not fully participate in a society where digital presence is considered a prerequisite for a full citizenship.

  • 10.
    Johansson, Stefan
    et al.
    KTH, School of Computer Science and Communication (CSC), Media Technology and Interaction Design, MID.
    Gulliksen, Jan
    KTH, School of Computer Science and Communication (CSC), Media Technology and Interaction Design, MID.
    Lantz, Ann
    KTH, School of Computer Science and Communication (CSC), Media Technology and Interaction Design, MID.
    User participation when users have mental and cognitive disabilities2015In: SSETS 2015 - Proceedings of the 17th International ACM SIGACCESS Conference on Computers and Accessibility, ACM Digital Library, 2015, p. 69-76Conference paper (Refereed)
    Abstract [en]

    Persons with cognitive or mental disabilities have difficulties participating in or are excluded from IT development and assessments exercises due to the problems finding good ways to efficiently collaborate on equal terms. In this paper we describe how we worked closely together with persons that have mental and cognitive disabilities in order to test and develop methods for participation in assessments and in processes for developing, Information and Communication Technology (ICT) products and services. More than 100 persons with mental and cognitive disabilities participated in the study (people with diagnoses such as depression, anxiety disorder, bipolarity, and schizophrenia). To explore the conditions for a more equal and fair participation we have developed and elaborated a set of methods, tools and approaches. By combining scientific research methods with well-established methods for empowerment and participation we have developed methods that are cost effective and that easily can be incorporated in existing processes. We believe that our approach have taken steps to implement possibilities for persons with mental and cognitive disabilities to take part where user participation is needed in order not to discriminate or exclude but also to improve the overall quality of the end result. The results clearly show that it is possible to include persons with mental and cognitive disabilities. A mixed method -- mixed tool approach can increase the possibility for participation. The results also show that the quality of the analysis phase increases if the collaborative approach is extended to also embrace the data analysis phase.

  • 11.
    Johansson, Stefan
    et al.
    Institutionen för pedagogik och specialpedagogik Göteborgs universitet.
    Gustafsson, Jan-Eric
    Institutionen för pedagogik och specialpedagogik Göteborgs universitet.
    Hansson, Åse
    Institutionen för pedagogik och specialpedagogik Göteborgs universitet.
    Alatalo, Tarja
    Dalarna University, School of Teacher Education, Educational Work.
    Estimating effects of teacher characteristics on student achievement in reading and mathematics: evidence from Swedish census data2024In: Scandinavian Journal of Educational Research, ISSN 0031-3831, E-ISSN 1470-1170, Vol. 68, no 4, p. 717-734Article in journal (Refereed)
    Abstract [en]

    There is consensus that teachers matter for student achievement. However, still, research has had difficulties to provide reliable evidence for the effects of observable teacher characteristics, like qualification measures. The current study uses panel data based on register information from teachers and students to estimate effects of teacher characteristics on student achievement in mathematics and Swedish in Grade 6. Applying fixed-effects regression to a large sample of schools, we observed significant positive effects of several teacher characteristics. Having a teaching license was found to be one of the most important qualification measures, but also the teachers’ level of experience mattered for student achievement. The effects of teacher qualifications were generally stronger in mathematics than for Swedish.

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    Download full text (pdf)
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  • 12.
    Johansson, Stefan
    et al.
    KTH, School of Electrical Engineering and Computer Science (EECS), Human Centered Technology, Media Technology and Interaction Design, MID.
    Hedvall, Per Olof
    Per-Olof Hedvall is an Associate professor in Rehabilitation engineering and design and works as Director of Certec, Department of Design Sciences, Lund University. He is also a guest professor in Design at Mid Sweden University. His current research aims to create new knowledge regarding the implementation of Universal Design in Sweden.
    Gulliksen, Jan
    KTH, School of Electrical Engineering and Computer Science (EECS), Human Centered Technology, Media Technology and Interaction Design, MID.
    von Koch, Lena
    Lena von Koch, PhD, is a Professor in Health Services Research at Karolinska Institutet. Presently, Lena is involved in scientific inquiries, both in high and low-income countries, focusing on the development and evaluation of digital interventions for promotion of health and self-management..
    Gustavsson, Catharina
    Catharina Gustavsson is an Associate Professor in Medical Science at Dalarna University and Senior Researcher at Center for Clinical Research in the healthcare region Dalarna. Catharina leads the 'Co-design for Accessibility (CoDeAc)' research program, which uses co-design methods in collaboration with people with impairments to increase accessibility, participation and inclusion for all people in the society.
    Prerequisites for digital participation - the case of digital health technology and people with impairments2024In: The Routledge International Handbook of Disability and Global Health, Informa UK Limited , 2024, p. 552-564Chapter in book (Refereed)
  • 13.
    Johansson, Stefan
    et al.
    KTH, School of Electrical Engineering and Computer Science (EECS), Human Centered Technology, Media Technology and Interaction Design, MID. Lund University, LTH, Faculty of Engineering, Certec, Department of Design Studies, Box 118, 221 00, Lund, Sweden.
    Hedvall, Per Olof
    Lund University, LTH, Faculty of Engineering, Certec, Department of Design Studies, Box 118, 221 00, Lund, Sweden.
    Larsdotter, Mia
    Lund University, LTH, Faculty of Engineering, Certec, Department of Design Studies, Box 118, 221 00, Lund, Sweden.
    Larsson, Thomas P.
    Funktionsrätt Skåne, Östra Varvsgatan 23, 211 73, Malmö, Sweden.
    Gustavsson, Catharina
    Center for Clinical Research Dalarna – Uppsala University, Nissers väg 3, SE-79182, Falun, Sweden; Department of Public Health and Caring Sciences, Uppsala University, BMC, Box 564, SE-751 22, Uppsala, Sweden; School of Health and Welfare, Dalarna University, SE-79188, Falun, Sweden.
    Co-Designing with Extreme Users: A Framework for User Participation in Design Processes2023In: Scandinavian Journal of Disability Research, ISSN 1501-7419, E-ISSN 1745-3011, Vol. 25, no 1, p. 418-430Article in journal (Refereed)
    Abstract [en]

    The demand for user participation in design processes is increasing, and there is a need to formulate guidance on how to involve disabled users and their representative organisations. Their participation contributes an extreme user perspective to the design process. The aim of this study was to develop an empirically grounded framework for user participation in co-design processes, involving the users with wide range of characteristics. The study was theoretically grounded in ‘participatory design’ and ‘value sensitive design’ and used an exploratory study design with online workshops to iteratively collect and analyse data. All participants collaborated on an online Miro-board to identify themes and formulate guiding principles for the framework. We propose a framework consisting of three themes: participation fundamentals, participation ethics and participation practicalities, entailing 11 guiding principles. By applying this framework, the premises, methods and activities in the design process will be accessible to all participants, and user participation in design projects will become more transparent, equitable and easier to implement. It will enable all users, people with disabilities and others, to participate and contribute to a design that can be used by the widest range of people.

  • 14.
    Johansson, Stefan
    et al.
    KTH Royal Inst Technol, Sch Elect Engn & Comp Sci, Dept Media Technol & Interact Design, S-10044 Stockholm, Sweden.;Lund Univ, Fac Engn, LTH, Certec,Dept Design Studies, Box 118, S-22100 Lund, Sweden..
    Hedvall, Per-Olof
    Lund Univ, Fac Engn, LTH, Certec,Dept Design Studies, Box 118, S-22100 Lund, Sweden..
    Larsdotter, Mia
    Lund Univ, Fac Engn, LTH, Certec,Dept Design Studies, Box 118, S-22100 Lund, Sweden..
    Larsson, Thomas P.
    Funktionsratt Skane, Ostra Varvsgatan 23, S-21173 Malmo, Sweden..
    Gustavsson, Catharina
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Family Medicine and Preventive Medicine. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Disciplinary Domain of Medicine and Pharmacy, research centers etc., Center for Clinical Research Dalarna. 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 University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health equity and working life. Uppsala Univ, Ctr Clin Res Dalarna, Nissers Vag 3, SE-79182 Falun, Sweden.;Uppsala Univ, Dept Publ Hlth & Caring Sci, BMC, Box 564, SE-75122 Uppsala, Sweden.;Dalarna Univ, Sch Hlth & Welf, SE-79188 Falun, Sweden..
    Co-Designing with Extreme Users: A Framework for User Participation in Design Processes2023In: Scandinavian Journal of Disability Research, ISSN 1501-7419, E-ISSN 1745-3011, Vol. 25, no 1, p. 418-430Article in journal (Refereed)
    Abstract [en]

    The demand for user participation in design processes is increasing, and there is a need to formulate guidance on how to involve disabled users and their representative organisations. Their participation contributes an extreme user perspective to the design process. The aim of this study was to develop an empirically grounded framework for user participation in co-design processes, involving the users with wide range of characteristics. The study was theoretically grounded in 'participatory design' and 'value sensitive design' and used an exploratory study design with online workshops to iteratively collect and analyse data. All participants collaborated on an online Miro-board to identify themes and formulate guiding principles for the framework. We propose a framework consisting of three themes: participation fundamentals, participation ethics and participation practicalities, entailing 11 guiding principles. By applying this framework, the premises, methods and activities in the design process will be accessible to all participants, and user participation in design projects will become more transparent, equitable and easier to implement. It will enable all users, people with disabilities and others, to participate and contribute to a design that can be used by the widest range of people.

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    FULLTEXT01
  • 15.
    Jonsson, Marika
    et al.
    KTH, School of Electrical Engineering and Computer Science (EECS), Human Centered Technology, Media Technology and Interaction Design, MID. Habilitering & Hälsa, Västra Götalandsregionen, Stationsgatan 3, Skövde, 54130, Sweden.
    Gustavsson, Catharina
    Center for Clinical Research Dalarna, Uppsala University, Nissers Väg 3, Falun, 79182, Sweden;School of Health and Welfare, Dalarna University, Falun, 79188, Sweden;Department of Public Health and Caring Sciences, Uppsala University, BMC, Box 564, Uppsala, 751 22, Sweden.
    Gulliksen, Jan
    KTH, School of Electrical Engineering and Computer Science (EECS), Human Centered Technology, Media Technology and Interaction Design, MID.
    Johansson, Stefan
    KTH, School of Electrical Engineering and Computer Science (EECS), Human Centered Technology, Media Technology and Interaction Design, MID. Certec, Department of Design Sciences, Faculty of Engineering, LTH Lund University, Box 118, Lund, 221 00, Sweden.
    How have public healthcare providers in Sweden conformed to the European Union’s Web Accessibility Directive regarding accessibility statements on their websites?2023In: Universal Access in the Information Society, ISSN 1615-5289, E-ISSN 1615-5297Article in journal (Refereed)
    Abstract [en]

    The Web Accessibility Directive (WAD) is part of the European Union’s work for digital inclusion. The WAD obligates that public sector bodies’ websites meet accessibility standards and provide an accessibility statement on the website informing about inaccessible content, and a feedback mechanism for reporting accessibility issues or requesting inaccessible content in an accessible format. The objective of this study was to evaluate how healthcare providers in Sweden have applied accessibility statements on their websites as regulated by law. A descriptive study using a mixed methods approach was conducted, by quantitative descriptive data analysis of the healthcare providers’ accessibility statements compliance to requirements and qualitative data analysis of the written information provided in the accessibility statement. All but one of the 37 evaluated healthcare providers published an accessibility statement. None of the healthcare providers fully met the requirements for accessibility statements, and no one complied with the intention of the law, i.e. to provide accessible health information and eHealth services. There was no or minor progress between the first and the latest published accessibility statement. The possibility to declare no or partial compliance with the law, or claim disproportionate burden, and the lack of enforcement procedures, risk producing symbolic actions e.g., publishing accessibility statements without intention to abide by the law. We suggest that the directives for accessibility statements should be advanced regarding comprehensiveness, understandability, and usefulness. It is suggested that the assessment protocol developed for this study may be used for future evaluations of accessibility statements.

  • 16.
    Jonsson, Marika
    et al.
    KTH, School of Electrical Engineering and Computer Science (EECS), Human Centered Technology, Media Technology and Interaction Design, MID. Habilitering & Hälsa, Västra Götalandsregionen, Skövde, Sweden.
    Johansson, Stefan
    KTH, School of Electrical Engineering and Computer Science (EECS), Human Centered Technology, Media Technology and Interaction Design, MID. Faculty of Engineering, LTH Department of Design Sciences, Certec, Lund, Sweden.
    Hussain, Dena
    KTH, School of Electrical Engineering and Computer Science (EECS), Human Centered Technology, Media Technology and Interaction Design, MID.
    Gulliksen, Jan
    KTH, School of Electrical Engineering and Computer Science (EECS), Human Centered Technology, Media Technology and Interaction Design, MID.
    Gustavsson, Catharina
    Development and Evaluation of eHealth Services Regarding Accessibility: Scoping Literature Review2023In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 25, p. e45118-e45118Article in journal (Refereed)
    Abstract [en]

    AbstractBackground:Accessibility is acknowledged as a key to inclusion in the Convention of Rights for People with Disabilities. An inaccessible design can result in exclusion from eHealth and cause disability among people who have impairments.

    Objective:This scoping literature review aimed to investigate how eHealth services have been developed and evaluated regarding accessibility for people with impairments.

    Methods:In line with Arksey and O’Malley’s framework for scoping studies and using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR), we conducted a search in 4 databases (PubMed, Scopus, IEEE, and Web of Science) in October 2020 and an update of the search in June 2022. The search strategy was structured according to the PICO model as follows: Population/Problem, digital accessibility for users with impairment; Intervention, health care delivered by any digital solution; Comparison, not applicable; Outcome, use of and adherence to (1) Web Content Accessibility Guidelines (WCAG), (2) other accessibility guidelines, and (3) other means, for designing or evaluating accessibility in eHealth services. A Boolean search was conducted by combining terms related to accessibility and eHealth. All authors participated in screening abstracts according to the eligibility criteria. Each publication, containing a potentially relevant abstract, was read (full text) and assessed for eligibility by 2 authors independently and pairwise. Publications deemed eligible were read by all authors and discussed for consensus.

    Results:A total of 8643 publications were identified. After abstract screening, 131 publications remained for full-text reading. Of those, 116 publications were excluded as they did not meet the eligibility criteria. Fifteen publications involving studies of 12 eHealth services were included in the study. Of the 15 publications, 2 provided a definition of accessibility, 5 provided an explanation of accessibility, and 8 did not provide any explanation. Five publications used the WCAG to evaluate accessibility when developing eHealth services. One publication used International Organization for Standardization (ISO) 29138, ISO 2941, and ISO/International Electrotechnical Commission (IEC) 30071-1 standards together with the Spanish Association for Standardization (UNE) 139803 standard. Eleven publications used other means to address accessibility, including text-level grading; literature review about accessibility; user tests, focus groups, interviews, and design workshops with target groups of patients, relatives, and health care professionals; and comparative analysis of existing technical solutions to provide information about useful requirements.

    Conclusions:Although a clear definition of accessibility can enhance operationalization and thus measurability when evaluating accessibility in eHealth services, accessibility was insufficiently defined in most of the included studies. Further, accessibility guidelines and standards were used to a very limited extent in the development and evaluation of eHealth services. Guidelines for developing complex interventions that include guidance for accessibility are motivated to ensure that accessibility will be considered systematically in eHealth services.

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    fulltext
  • 17.
    Jonsson, Marika
    et al.
    KTH Royal Inst Technol, Sch Elect Engn & Comp Sci, Stockholm, Sweden.;Reg Vastra Gotaland, Habilitat & Hlth, Skövde, Sweden.;KTH Royal Inst Technol, Sch Elect Engn & Comp Sci, Lindstedtsvagen 3, S-11428 Stockholm, Sweden..
    Johansson, Stefan
    KTH Royal Inst Technol, Sch Elect Engn & Comp Sci, Stockholm, Sweden.;Certec, Fac Engn, LTH Dept Design Sci, Lund, Sweden..
    Hussain, Dena
    KTH Royal Inst Technol, Sch Elect Engn & Comp Sci, Stockholm, Sweden..
    Gulliksen, Jan
    KTH Royal Inst Technol, Sch Elect Engn & Comp Sci, Stockholm, Sweden..
    Gustavsson, Catharina
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Disciplinary Domain of Medicine and Pharmacy, research centers etc., Center for Clinical Research Dalarna. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health equity and working life. Dalarna Univ, Sch Hlth & Welf, Falun, Sweden.
    Development and Evaluation of eHealth Services Regarding Accessibility: Scoping Literature Review2023In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 25, article id e45118Article, review/survey (Refereed)
    Abstract [en]

    Background: Accessibility is acknowledged as a key to inclusion in the Convention of Rights for People with Disabilities. An inaccessible design can result in exclusion from eHealth and cause disability among people who have impairments. Objective: This scoping literature review aimed to investigate how eHealth services have been developed and evaluated regarding accessibility for people with impairments. Methods: In line with Arksey and O'Malley's framework for scoping studies and using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR), we conducted a search in 4 databases (PubMed, Scopus, IEEE, and Web of Science) in October 2020 and an update of the search in June 2022. The search strategy was structured according to the PICO model as follows: Population/Problem, digital accessibility for users with impairment; Intervention, health care delivered by any digital solution; Comparison, not applicable; Outcome, use of and adherence to (1) Web Content Accessibility Guidelines (WCAG), (2) other accessibility guidelines, and (3) other means, for designing or evaluating accessibility in eHealth services. A Boolean search was conducted by combining terms related to accessibility and eHealth. All authors participated in screening abstracts according to the eligibility criteria. Each publication, containing a potentially relevant abstract, was read (full text) and assessed for eligibility by 2 authors independently and pairwise. Publications deemed eligible were read by all authors and discussed for consensus. Results: A total of 8643 publications were identified. After abstract screening, 131 publications remained for full-text reading. Of those, 116 publications were excluded as they did not meet the eligibility criteria. Fifteen publications involving studies of 12 eHealth services were included in the study. Of the 15 publications, 2 provided a definition of accessibility, 5 provided an explanation of accessibility, and 8 did not provide any explanation. Five publications used the WCAG to evaluate accessibility when developing eHealth services. One publication used International Organization for Standardization (ISO) 29138, ISO 2941, and ISO/International Electrotechnical Commission (IEC) 30071-1 standards together with the Spanish Association for Standardization (UNE) 139803 standard. Eleven publications used other means to address accessibility, including text-level grading; literature review about accessibility; user tests, focus groups, interviews, and design workshops with target groups of patients, relatives, and health care professionals; and comparative analysis of existing technical solutions to provide information about useful requirements. Conclusions: Although a clear definition of accessibility can enhance operationalization and thus measurability when evaluating accessibility in eHealth services, accessibility was insufficiently defined in most of the included studies. Further, accessibility guidelines and standards were used to a very limited extent in the development and evaluation of eHealth services. Guidelines for developing complex interventions that include guidance for accessibility are motivated to ensure that accessibility will be considered systematically in eHealth services.

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    FULLTEXT01
  • 18.
    Lantz, Ann
    et al.
    KTH, School of Computer Science and Communication (CSC), Media Technology and Interaction Design, MID.
    Borg, Johan
    KTH, School of Computer Science and Communication (CSC), Media Technology and Interaction Design, MID.
    Johansson, Stefan
    KTH, School of Computer Science and Communication (CSC), Media Technology and Interaction Design, MID.
    Hilden, Anita
    Gulliksen, Jan
    KTH, School of Computer Science and Communication (CSC), Media Technology and Interaction Design, MID.
    Accessibility to electronic communication for people with cognitive Disabilities: A Review of grey literatureManuscript (preprint) (Other academic)
  • 19.
    Lantz, Ann
    et al.
    KTH, School of Computer Science and Communication (CSC), Media Technology and Interaction Design, MID.
    Johansson, Stefan
    KTH, School of Computer Science and Communication (CSC), Media Technology and Interaction Design, MID.
    Hildén, Anita
    Borg, Johan
    KTH, School of Computer Science and Communication (CSC), Media Technology and Interaction Design, MID.
    Gulliksen, Jan
    KTH, School of Computer Science and Communication (CSC), Media Technology and Interaction Design, MID.
    Kognitiv tillgänglighet till elektronisk kommunikation, del två: En sammanfattning av utvärderade tillgänglighetsåtgärder2014Report (Other (popular science, discussion, etc.))
    Abstract [sv]

    Författarna har under perioden oktober 2013 – februari 2014 genomfört en systematisk kunskapsöversikt av utvärderade och rapporterade empiriska studier av tillgänglighet till elektronisk kommunikation för personer med kognitiva funktionshinder som inte publicerats vetenskapligt. Resultatet av denna studie presenteras på ett förenklat sätt i denna rapport.

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    Kognitiv tillgänglighet,del två_2014
  • 20.
    Müssener, Ulrika
    et al.
    Department of Health, Medicine, and Caring Sciences, Linköping University, Linköping, Sweden.
    Henriksson, Pontus
    Department of Health, Medicine, and Caring Sciences, Linköping University, Linköping, Sweden.
    Gustavsson, Catharina
    Center for Clinical Research Dalarna, Uppsala University, Falun, Sweden; School of Health and Welfare, Dalarna University, Falun, Sweden; Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden.
    Henriksson, Hanna
    Department of Health, Medicine, and Caring Sciences, Linköping University, Linköping, Sweden.
    Tyrberg, Mårten J.
    Centre for Clinical Research, Uppsala University, Uppsala, Sweden; Region Västmanland, Västmanland Hospital, Västerås, Sweden.
    Johansson, Stefan
    KTH, School of Electrical Engineering and Computer Science (EECS), Human Centered Technology, Media Technology and Interaction Design, MID. Department of Design Sciences, Lund University, Lund, Sweden.
    Ågren, Kristin Alfredsson
    Department of Health, Medicine, and Caring Sciences, Linköping University, Linköping, Sweden.
    Promoting Healthy Behaviors Among Adolescents and Young Adults With Intellectual Disability: Protocol for Developing a Digital Intervention With Co-Design Workshops2023In: JMIR Research Protocols, E-ISSN 1929-0748, Vol. 12, article id e47877Article in journal (Refereed)
    Abstract [en]

    Background: Intellectual disability (ID) is a neurodevelopmental disorder associated with a poorer health profile and higher mortality. Young people with ID have more sedentary lifestyles than their typically developing peers. Consequently, this group is at significant risk of developing lifestyle diseases (ie, noncommunicable diseases) later in life. Increasing physical activity and eating a healthier diet have been argued to be effective ways to improve the health of adolescents and young adults with ID. Digital interventions are a viable option for improving health behaviors. Objective: This research protocol describes a co-design approach using workshops to develop a digital intervention that promotes healthy behaviors, including increasing physical activity and eating a healthier diet, among adolescents and young adults with ID. Methods: A participatory design using a co-design approach will be applied as a strategy to include potential users of the digital intervention and other stakeholders in the research process, comprising research design, data collection, and data analysis. A total of 7 to 10 workshops will be conducted aimed at developing a digital intervention and will include procedures for assessing needs; facilitators and barriers to health promotion; physical, mental, and social well-being; participation; and relationships. The workshops will include 12 to 18 stakeholders with experience of clinical practice and research related to young people with ID, including relatives, as well as adolescents and young adults (aged 16-25 years) with mild to moderate ID. Participants will perform a mixture of individual and group work using whiteboards, sticky notes, felt-tip pens, cards, balls, stickers, and wireframe templates. Data analysis will take place concurrently with data collection as an iterative process. Transcribed data from the audio and video recordings of the groups’ discussions will be analyzed following a qualitative methodological procedure. Results: This study protocol provides a systematic record of the scientific methodologies used when developing the digital intervention and provides insights into the potential practical solutions and challenges when following a co-design approach in which relatives and professionals, as well as adolescents and young adults with ID, are included as research partners. Recruitment of participants started in April 2023. Data collection, analysis, and reporting will be completed in December 2023. Conclusions: This study will explore the effectiveness of workshops at gathering rich, reliable, and valid data in a co-design approach with participants. The results will provide increased knowledge in how to use technology to develop novel, evidence-based, and scalable interventions that adolescents and young adults with ID can and want to use to motivate physical activity and a healthier diet. The project will provide a simple and cognitively accessible digital solution for promoting lifestyle behaviors tailored to the needs of adolescents and young adults with ID.

  • 21.
    Müssener, Ulrika
    et al.
    Linköping Univ, Dept Hlth Med & Caring Sci, SE-58185 Linköping, Sweden..
    Henriksson, Pontus
    Linköping Univ, Dept Hlth Med & Caring Sci, SE-58185 Linköping, Sweden..
    Gustavsson, Catharina
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Disciplinary Domain of Medicine and Pharmacy, research centers etc., Center for Clinical Research Dalarna. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health equity and working life. Dalarna Univ, Sch Hlth & Welf, Falun, Sweden..
    Henriksson, Hanna
    Linköping Univ, Dept Hlth Med & Caring Sci, SE-58185 Linköping, Sweden..
    Tyrberg, Mårten
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Disciplinary Domain of Medicine and Pharmacy, research centers etc., Centre for Clinical Research, County of Västmanland. Vastmanland Hosp, Reg Vastmanland, Västerås, Sweden..
    Johansson, Stefan
    Kungliga Tekn Högskolan, Sch Elect Engn & Comp Sci, Div Media Technol & Interact Design, Stockholm, Sweden.;Lund Univ, Dept Design Sci, Lund, Sweden..
    Ågren, Kristin Alfredsson
    Linköping Univ, Dept Hlth Med & Caring Sci, SE-58185 Linköping, Sweden..
    Promoting Healthy Behaviors Among Adolescents and Young Adults With Intellectual Disability: Protocol for Developing a Digital Intervention With Co-Design Workshops2023In: JMIR Research Protocols, E-ISSN 1929-0748, Vol. 12, article id e47877Article in journal (Refereed)
    Abstract [en]

    Background: Intellectual disability (ID) is a neurodevelopmental disorder associated with a poorer health profile and higher mortality. Young people with ID have more sedentary lifestyles than their typically developing peers. Consequently, this group is at significant risk of developing lifestyle diseases (ie, noncommunicable diseases) later in life. Increasing physical activity and eating a healthier diet have been argued to be effective ways to improve the health of adolescents and young adults with ID. Digital interventions are a viable option for improving health behaviors.

    Objective: This research protocol describes a co-design approach using workshops to develop a digital intervention that promotes healthy behaviors, including increasing physical activity and eating a healthier diet, among adolescents and young adults with ID.

    Methods: A participatory design using a co-design approach will be applied as a strategy to include potential users of the digital intervention and other stakeholders in the research process, comprising research design, data collection, and data analysis. A total of 7 to 10 workshops will be conducted aimed at developing a digital intervention and will include procedures for assessing needs; facilitators and barriers to health promotion; physical, mental, and social well-being; participation; and relationships. The workshops will include 12 to 18 stakeholders with experience of clinical practice and research related to young people with ID, including relatives, as well as adolescents and young adults (aged 16-25 years) with mild to moderate ID. Participants will perform a mixture of individual and group work using whiteboards, sticky notes, felt-tip pens, cards, balls, stickers, and wireframe templates. Data analysis will take place concurrently with data collection as an iterative process. Transcribed data from the audio and video recordings of the groups' discussions will be analyzed following a qualitative methodological procedure.

    Results: This study protocol provides a systematic record of the scientific methodologies used when developing the digital intervention and provides insights into the potential practical solutions and challenges when following a co-design approach in which relatives and professionals, as well as adolescents and young adults with ID, are included as research partners. Recruitment of participants started in April 2023. Data collection, analysis, and reporting will be completed in December 2023.

    Conclusions: This study will explore the effectiveness of workshops at gathering rich, reliable, and valid data in a co-design approach with participants. The results will provide increased knowledge in how to use technology to develop novel, evidence-based, and scalable interventions that adolescents and young adults with ID can and want to use to motivate physical activity and a healthier diet. The project will provide a simple and cognitively accessible digital solution for promoting lifestyle behaviors tailored to the needs of adolescents and young adults with ID.

    Download full text (pdf)
    fulltext
  • 22.
    Normand, Claude L.
    et al.
    Department of Psychoeducation and Psychology, Université du Québec en Outaouais, Gatineau, Qc, Canada.
    Gustavsson, Catharina
    Center for Clinical Research Dalarna, Uppsala University, Falun, Sweden; Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden; School of Health and Welfare, Dalarna University, Falun, Sweden.
    Alfredsson Ågren, Kristin
    Department of Health, Medicine and Caring Sciences, Linköping University, Linköping, Sweden.
    Heitplatz, Vanessa N.
    Social Research Center and Rehabilitation Technology, TU Dortmund University, Dortmund, Germany.
    Chadwick, Darren D.
    School of Psychology, Liverpool John Moores University, Liverpool, UK.
    Johansson, Stefan
    KTH, School of Electrical Engineering and Computer Science (EECS), Human Centered Technology, Media Technology and Interaction Design, MID. Faculty of Engineering, Certec, Department of Design Studies, LTH, Lund University, Lund, Sweden.
    “Mum Helps Me When the Internet Messes Up…”: Accessibility of eHealth Services for People with Intellectual Disability2024In: Universal Access in Human-Computer Interaction - 18th International Conference, UAHCI 2024, Held as Part of the 26th HCI International Conference, HCII 2024, Proceedings, Springer Nature , 2024, p. 213-230Conference paper (Refereed)
    Abstract [en]

    Many services have become digitized in society, including health services. Although there are many advantages to eHealth services, some segments of the population cannot reap those benefits. Objectives: This study aimed to: 1- describe how people with intellectual disability use the internet in Sweden; and 2- understand the nature of the contextual and personal barriers these users face when trying to access eHealth services in particular. Methods: Data from the nationwide survey “Swedes with Impairment and the Internet 2021” (SMFOI-21) were extracted for a subsample of 154 people with self-declared intellectual disability. Results: Findings reveal that people with intellectual disability used the internet predominantly for entertainment purposes. Challenges arose in more complex online activities, like internet searches, logging into eHealth services, booking medical appointments, and financial transactions. Participants relied on support from family, guardians or staff to read, write, create and memorise passwords, understand content, or solve technical problems encountered. They expressed a desire to engage more independently in the digital society but faced barriers due to the cognitive requirements of using apps and the internet as designed by computer scientists, difficulties in navigating complex online processes, such as eHealth services, and a lack of accessible infrastructure. Conclusion: This research underscores the importance of improved accessibility, simplified interfaces, clearer instructions, and a supportive ecosystem to enhance their digital inclusion. It is a matter of people with intellectual disability being afforded equal rights to access health services.

  • 23.
    Normand, Claude L.
    et al.
    Department of Psychoeducation and Psychology, Université du Québec en Outaouais, Gatineau, Qc, Canada.
    Gustavsson, Catharina
    Center for Clinical Research Dalarna, Uppsala University, Falun, Sweden; Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden; School of Health and Welfare, Dalarna University, Falun, Sweden.
    Alfredsson Ågren, Kristin
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Prevention, Rehabilitation and Community Medicine. Linköping University, Faculty of Medicine and Health Sciences.
    Heitplatz, Vanessa N.
    Social Research Center and Rehabilitation Technology, TU Dortmund University, Dortmund, Germany.
    Chadwick, Darren D.
    School of Psychology, Liverpool John Moores University, Liverpool, UK.
    Johansson, Stefan
    Department of Media Technology and Interaction Design, School of Electrical Engineering and Computer Science, KTH, Royal Institute of Technology, Stockholm, Sweden; Faculty of Engineering, Certec, Department of Design Studies, LTH, Lund University, Lund, Sweden.
    “Mum Helps Me When the Internet Messes Up…”: Accessibility of eHealth Services for People with Intellectual Disability2024In: Universal Access in Human-Computer Interaction: 18th International Conference, UAHCI 2024, Held as Part of the 26th HCI International Conference, HCII 2024, Washington, DC, USA, June 29 – July 4, 2024, Proceedings, Part II / [ed] Margherita Antona, Constantine Stephanidis, Springer, 2024, p. 213-230Conference paper (Refereed)
    Abstract [en]

    Many services have become digitized in society, including health services. Although there are many advantages to eHealth services, some segments of the population cannot reap those benefits.

    Objectives: This study aimed to: 1- describe how people with intellectual disability use the internet in Sweden; and 2- understand the nature of the contextual and personal barriers these users face when trying to access eHealth services in particular.

    Methods: Data from the nationwide survey “Swedes with Impairment and the Internet 2021” (SMFOI-21) were extracted for a subsample of 154 people with self-declared intellectual disability.

    Results: Findings reveal that people with intellectual disability used the internet predominantly for entertainment purposes. Challenges arose in more complex online activities, like internet searches, logging into eHealth services, booking medical appointments, and financial transactions. Participants relied on support from family, guardians or staff to read, write, create and memorise passwords, understand content, or solve technical problems encountered. They expressed a desire to engage more independently in the digital society but faced barriers due to the cognitive requirements of using apps and the internet as designed by computer scientists, difficulties in navigating complex online processes, such as eHealth services, and a lack of accessible infrastructure. Conclusion: This research underscores the importance of improved accessibility, simplified interfaces, clearer instructions, and a supportive ecosystem to enhance their digital inclusion. It is a matter of people with intellectual disability being afforded equal rights to access health services.

  • 24.
    Pettersson, Linda
    et al.
    Uppsala Univ, Ctr Clin Res Dalarna, Nissers Vag 3, SE-79182 Falun, Sweden.;Uppsala Univ, Dept Publ Hlth & Caring Sci, Box 564, SE-75122 Uppsala, Sweden.;Mora Hosp, Primary Healthcare Ctr Mora, SE-79285 Mora, Sweden..
    Johansson, Stefan
    KTH, School of Electrical Engineering and Computer Science (EECS), Human Centered Technology, Media Technology and Interaction Design, MID.
    Demmelmaier, Ingrid
    Uppsala Univ, Dept Publ Hlth & Caring Sci, Box 564, SE-75122 Uppsala, Sweden..
    Gustavsson, Catharina
    Uppsala Univ, Ctr Clin Res Dalarna, Nissers Vag 3, SE-79182 Falun, Sweden.;Uppsala Univ, Dept Publ Hlth & Caring Sci, Box 564, SE-75122 Uppsala, Sweden.;Dalarna Univ, Sch Hlth & Welf, SE-79188 Falun, Sweden..
    Disability digital divide: survey of accessibility of eHealth services as perceived by people with and without impairment2023In: BMC Public Health, E-ISSN 1471-2458, Vol. 23, no 1, article id 181Article in journal (Refereed)
    Abstract [en]

    BackgroundSustainable and effective eHealth requires accessibility for everyone. Little is known about how accessibility of eHealth is perceived among people with various impairments. The aim of this study was to compare use and perceived difficulty in the use of eHealth among people with and without impairment, and how different types of impairment were associated with perceived difficulty in the use of eHealth.MethodsThis study used data collected in a nationwide survey in Sweden. Snowball sampling was used to recruit participants with self-reported impairment, from June to October 2019. In February 2020, the survey was posted to people in the general population who were matched to the participants with impairment by age, gender and county of residence. Multiple logistic regression was used to analyse the use of four eHealth services, and perceived difficulty in the use of six eHealth services.ResultsIn total, 1631 participants with, and 1084 participants without impairment responded to the survey. Participants with impairment reported less use and more difficulty in the use of all eHealth services as compared to participants without impairment. When comparing types of impairment, booking healthcare appointments online was least used and most avoided by participants with communication, language and calculation impairments (adjusted odds ratio (aOR) use 0.64, 95% confidence interval (95%CI) 0.49-0.83; aOR avoid 1.64, 95%CI 1.19-2.27), and intellectual impairments (aOR use 0.28, 95%CI 0.20-0.39; aOR avoid 2.88, 95%CI 1.86-4.45). The Swedish national web-portal for health information and services, 1177.se, was reported difficult to use the most among participants with communication, language and calculation impairments (aOR 2.24, 95%CI 1.50-3.36), deaf-blindness (aOR 11.24, 95%CI 3.49-36.23) and hearing impairment (aOR 2.50, 95%CI 1.17-5.35).ConclusionsThe results confirm the existence of an eHealth disability digital divide. People with impairment were not one homogeneous group, but differed in perceived difficulties in regard to eHealth. Based on a purposeful subgrouping of impairments, we showed that people with communication, language and calculation impairments, and intellectual impairments, reported least use and most difficulty in using eHealth. The findings can guide further research in creating eHealth that is accessible for all, including those with the most significant difficulties.

  • 25.
    Pettersson, Linda
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Disciplinary Domain of Medicine and Pharmacy, research centers etc., Center for Clinical Research Dalarna. 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. Mora Hosp, Primary Healthcare Ctr Mora, SE-79285 Mora, Sweden..
    Johansson, Stefan
    KTH Royal Inst Technol, Sch Elect Engn & Comp Sci, SE-10044 Stockholm, Sweden..
    Demmelmaier, Ingrid
    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.
    Gustavsson, Catharina
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Disciplinary Domain of Medicine and Pharmacy, research centers etc., Center for Clinical Research Dalarna. 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. Dalarna Univ, Sch Hlth & Welf, SE-79188 Falun, Sweden..
    Disability digital divide: survey of accessibility of eHealth services as perceived by people with and without impairment2023In: BMC Public Health, E-ISSN 1471-2458, Vol. 23, no 1, article id 181Article in journal (Refereed)
    Abstract [en]

    Background: Sustainable and effective eHealth requires accessibility for everyone. Little is known about how accessibility of eHealth is perceived among people with various impairments. The aim of this study was to compare use and perceived difficulty in the use of eHealth among people with and without impairment, and how different types of impairment were associated with perceived difficulty in the use of eHealth.

    Methods: This study used data collected in a nationwide survey in Sweden. Snowball sampling was used to recruit participants with self-reported impairment, from June to October 2019. In February 2020, the survey was posted to people in the general population who were matched to the participants with impairment by age, gender and county of residence. Multiple logistic regression was used to analyse the use of four eHealth services, and perceived difficulty in the use of six eHealth services.

    Results: In total, 1631 participants with, and 1084 participants without impairment responded to the survey. Participants with impairment reported less use and more difficulty in the use of all eHealth services as compared to participants without impairment. When comparing types of impairment, booking healthcare appointments online was least used and most avoided by participants with communication, language and calculation impairments (adjusted odds ratio (aOR) use 0.64, 95% confidence interval (95%CI) 0.49-0.83; aOR avoid 1.64, 95%CI 1.19-2.27), and intellectual impairments (aOR use 0.28, 95%CI 0.20-0.39; aOR avoid 2.88, 95%CI 1.86-4.45). The Swedish national web-portal for health information and services, 1177.se, was reported difficult to use the most among participants with communication, language and calculation impairments (aOR 2.24, 95%CI 1.50-3.36), deaf-blindness (aOR 11.24, 95%CI 3.49-36.23) and hearing impairment (aOR 2.50, 95%CI 1.17-5.35).

    Conclusions: The results confirm the existence of an eHealth disability digital divide. People with impairment were not one homogeneous group, but differed in perceived difficulties in regard to eHealth. Based on a purposeful subgrouping of impairments, we showed that people with communication, language and calculation impairments, and intellectual impairments, reported least use and most difficulty in using eHealth. The findings can guide further research in creating eHealth that is accessible for all, including those with the most significant difficulties.

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