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Survey methods that enhance participation among people with disabilities
KTH, School of Electrical Engineering and Computer Science (EECS), Media Technology and Interaction Design, MID.ORCID iD: 0000-0003-0167-2557
KTH, School of Electrical Engineering and Computer Science (EECS), Media Technology and Interaction Design, MID.ORCID iD: 0000-0002-2411-6417
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.ORCID iD: 0000-0003-0167-2557
(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 [en]
Digital divide, Participation, Universal Design, Inclusion, Rare Populations, Accessible surveys
National Category
Interaction Technologies
Research subject
Human-computer Interaction
Identifiers
URN: urn:nbn:se:kth:diva-262818OAI: oai:DiVA.org:kth-262818DiVA, id: diva2:1362513
Note

QC 20191021

Available from: 2019-10-21 Created: 2019-10-21 Last updated: 2019-10-21Bibliographically approved
In thesis
1. 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

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