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Design for Participation and Inclusion will Follow: Disabled People and the Digital Society
KTH, School of Electrical Engineering and Computer Science (EECS), Media Technology and Interaction Design, MID.ORCID iD: 0000-0003-0167-2557
2019 (English)Doctoral 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.

Place, publisher, year, edition, pages
Stockholm: KTH Royal Institute of Technology, 2019. , p. 142
Series
TRITA-EECS-AVL ; 2019:78
Keywords [en]
Design, Accessibility, Universal Design, Participation, Disability Digital Divide, Inclusion
National Category
Interaction Technologies
Research subject
Human-computer Interaction
Identifiers
URN: urn:nbn:se:kth:diva-262819ISBN: 978-91-7873-325-5 (print)OAI: oai:DiVA.org:kth-262819DiVA, id: diva2:1362526
Public defence
2019-11-22, Kollegiesalen, Brinellvägen 8, Stockholm, 13:00 (English)
Opponent
Supervisors
Note

QC 20191021

Available from: 2019-10-21 Created: 2019-10-21 Last updated: 2019-10-21Bibliographically approved
List of papers
1. Survey methods that enhance participation among people with disabilities
Open this publication in new window or tab >>Survey methods that enhance participation among people with disabilities
(English)Manuscript (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.

Keywords
Digital divide, Participation, Universal Design, Inclusion, Rare Populations, Accessible surveys
National Category
Interaction Technologies
Research subject
Human-computer Interaction
Identifiers
urn:nbn:se:kth:diva-262818 (URN)
Note

QC 20191021

Available from: 2019-10-21 Created: 2019-10-21 Last updated: 2019-10-21Bibliographically approved
2. Disability Digital Divide: The Use of the Internet, Smartphones, Computers and Tablets among People with Disabilities in Sweden
Open this publication in new window or tab >>Disability Digital Divide: The Use of the Internet, Smartphones, Computers and Tablets among People with Disabilities in Sweden
(English)Manuscript (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.

Keywords
Disability Digital Divide, Accessibility, Internet Access, Internet Usage, Internet Skills, Smartphone, Tablet, Assistive Technology. Inclusion. Exclusion.
National Category
Interaction Technologies
Research subject
Human-computer Interaction
Identifiers
urn:nbn:se:kth:diva-262817 (URN)
Note

QC 20191021

Available from: 2019-10-21 Created: 2019-10-21 Last updated: 2019-10-21Bibliographically approved
3. Can Mainstream Smart Technology Support Homeless People Leaving Homelessness?
Open this publication in new window or tab >>Can Mainstream Smart Technology Support Homeless People Leaving Homelessness?
(English)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.

Keywords
Accessibility, Homeless, Digital Divide, Smart Technology
National Category
Interaction Technologies
Research subject
Human-computer Interaction
Identifiers
urn:nbn:se:kth:diva-262816 (URN)
Note

QC 20191021

Available from: 2019-10-21 Created: 2019-10-21 Last updated: 2019-10-21Bibliographically approved
4. User participation when users have mental and cognitive disabilities
Open this publication in new window or tab >>User participation when users have mental and cognitive disabilities
2015 (English)In: SSETS 2015 - Proceedings of the 17th International ACM SIGACCESS Conference on Computers and Accessibility, ACM Digital Library, 2015, p. 69-76Conference paper, Published 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.

Place, publisher, year, edition, pages
ACM Digital Library, 2015
Keywords
Accessibility, Cognitive disability, Inclusion, Mental disability, Mental problems, User participation
National Category
Interaction Technologies
Research subject
Human-computer Interaction
Identifiers
urn:nbn:se:kth:diva-183167 (URN)10.1145/2700648.2809849 (DOI)000380614200009 ()2-s2.0-84962665252 (Scopus ID)978-1-4503-3400-6 (ISBN)
Conference
17th International ACM SIGACCESS Conference on Computers and Accessibility, ASSETS 2015, Lisbon, Portugal, 26 October 2015 through 28 October 2015
Funder
The Swedish Post and Telecom Authority (PTS)
Note

QC 20160303

Available from: 2016-03-03 Created: 2016-03-03 Last updated: 2019-10-21Bibliographically approved
5. Cognitive Accessibility for Mentally Disabled Persons
Open this publication in new window or tab >>Cognitive Accessibility for Mentally Disabled Persons
2015 (English)In: Human–Computer Interaction, Springer Berlin/Heidelberg, 2015, p. 418-435Conference paper, Published 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.

Place, publisher, year, edition, pages
Springer Berlin/Heidelberg, 2015
Series
Lecture Notes in Computer Science, ISSN 0302-9743 ; 9296
Keywords
Mental disability, Mental problems, Cognitive accessibility, Digital society, Inclusion
National Category
Computer Sciences Robotics
Identifiers
urn:nbn:se:kth:diva-177433 (URN)10.1007/978-3-319-22701-6_31 (DOI)000363681800031 ()2-s2.0-84945531079 (Scopus ID)978-3-319-22701-6 (ISBN)978-3-319-22700-9 (ISBN)
Conference
15th IFIP TC.13 International Conference on Human-Computer Interaction (INTERACT), SEP 14-18, 2015, Bamberg, GERMANY
Note

QC 20151120. QC 20191021

Available from: 2015-11-20 Created: 2015-11-20 Last updated: 2019-10-21Bibliographically approved

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