Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
User participation when users have mental and cognitive disabilities
KTH, School of Computer Science and Communication (CSC), Media Technology and Interaction Design, MID.ORCID iD: 0000-0003-0167-2557
KTH, School of Computer Science and Communication (CSC), Media Technology and Interaction Design, MID.ORCID iD: 0000-0002-2411-6417
KTH, School of Computer Science and Communication (CSC), Media Technology and Interaction Design, MID.ORCID iD: 0000-0002-4200-6385
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. p. 69-76
Keywords [en]
Accessibility, Cognitive disability, Inclusion, Mental disability, Mental problems, User participation
National Category
Interaction Technologies
Research subject
Human-computer Interaction
Identifiers
URN: urn:nbn:se:kth:diva-183167DOI: 10.1145/2700648.2809849ISI: 000380614200009Scopus ID: 2-s2.0-84962665252ISBN: 978-1-4503-3400-6 (print)OAI: oai:DiVA.org:kth-183167DiVA, id: diva2:908636
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
In thesis
1. Towards a framework to understand mental and cognitive accessibility in a digital context
Open this publication in new window or tab >>Towards a framework to understand mental and cognitive accessibility in a digital context
2016 (English)Licentiate 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.

Abstract [sv]

Digitaliseringen har på många sätt bidragit till ökad inkludering, men tillgången till det digitala samhället är inte jämnt fördelat i befolkningen. Vi kan se grupper av medborgare som inte känner sig delaktiga i övergången till ett digitaliserat samhälle, eller som kanske är med fast inte lika mycket som alla andra och inte lika mycket som de egentligen skulle vilja.

Avhandlingens syfte är att med utgångspunkt från studien ”Pilotstudie om tillgänglighet till elektronisk kommunikation för personer med psykiska funktionsnedsättningar”, aktuella litteraturöversikter och snart 25 års arbete på fältet diskutera hur designers och utvecklare i högre utsträckning ska kunna beakta krav på tillgänglighet för personer med psykiska och kognitiva funktionsnedsättningar.

De design- och utvecklingsprocesser jag i första hand är intresserad av att belysa är sådana som producerar digitala produkter och tjänster inom det vi kallar mainstream, det samhälle där vi agerar som samhällsmedborgare har skyldigheter och rättigheter och där vi efter bästa förmåga ska kunna förverkliga våra drömmar, önskemål och behov. Där vi hittar vänner, familj, utbildning, försörjning och meningsfullhet i de aktiviteter och de sysslor vi utför.

De personer som medverkat i studien beskriver situationer där:

  • Design- och utvecklingsprocesser ofta misslyckas med att tillgodose behov av kognitiv enkelhet
  • Många i sig relativt enkla processer och aktiviteter skapar sammantaget nya och okända svårigheter
  • Stödprocesser fungerar dåligt
  • Kunskap om användarnas behov saknas eller når inte ut till personer eller till processer där den skulle göra nytta

Personerna beskriver också att de i inte är delaktiga i design- och utvecklingsprocesser och att den kunskap och de erfarenheter de besitter inte tas tillvara.

Det finns behov av en överföring av kunskap från de områden som producerar sådan idag (rehabilitering, hjälpmedel, särlösningar) till mainstream. Det finns behov av att utforska och beskriva den kunskap och erfarenhet som finns hos de berörda personerna och till sist finns behov av att direkt i mainstream-samhället och tillsammans med personer som har psykiska och kognitiva funktionsnedsättningar göra detta samhälle mer tillgängligt. Metoder för hur detta ska gå till förefaller behöva utvecklas. Det gäller särskilt metoder för hur personer med psykiska och kognitiva funktionsnedsättningar ska få inflytande över och vara delaktiga i design- och utvecklingsprocesser.

Avhandlingen presenterar ett förslag till ramverk för hur design- och utvecklingsprocesser bättre ska kunna möta kraven på tillgänglighet för personer med psykiska och kognitiva funktionsnedsättningar.

Place, publisher, year, edition, pages
Stockholm: KTH Royal Institute of Technology, 2016. p. 61
Series
TRITA-CSC-A, ISSN 1653-5723 ; 16:02
Keywords
Accessibility, cognitive, mental, disability, design, universal design
National Category
Interaction Technologies
Research subject
Human-computer Interaction
Identifiers
urn:nbn:se:kth:diva-183168 (URN)978-91-7595-871-2 (ISBN)
Presentation
2016-03-16, F3, Lindstedtsvägen 26, KTH, Stockholm, 10:00 (English)
Opponent
Supervisors
Note

QC 20160303

Available from: 2016-03-03 Created: 2016-03-03 Last updated: 2016-03-07Bibliographically approved
2. Design for Participation and Inclusion will Follow: Disabled People and the Digital Society
Open this publication in new window or tab >>Design for Participation and Inclusion will Follow: Disabled People and the Digital Society
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
Design, Accessibility, Universal Design, Participation, Disability Digital Divide, Inclusion
National Category
Interaction Technologies
Research subject
Human-computer Interaction
Identifiers
urn:nbn:se:kth:diva-262819 (URN)978-91-7873-325-5 (ISBN)
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

Open Access in DiVA

No full text in DiVA

Other links

Publisher's full textScopus

Authority records BETA

Johansson, StefanGulliksen, JanLantz, Ann

Search in DiVA

By author/editor
Johansson, StefanGulliksen, JanLantz, Ann
By organisation
Media Technology and Interaction Design, MID
Interaction Technologies

Search outside of DiVA

GoogleGoogle Scholar

doi
isbn
urn-nbn

Altmetric score

doi
isbn
urn-nbn
Total: 523 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf