This article discusses the methodological challenges and lessons learned from an online survey conducted among Swedish disability organisations during 2022–2023. Our analysis aims to inform future studies within civil society and beyond. A total of 78 disability organisations, encompassing 2,652 branches at national, regional and local levels were identified. A 122-item survey was then distributed via email. To achieve a 32% response rate, we employed several strategies, including offering accessibility options, directly contacting organisations and promoting the survey within the disability community. The low rate of internal missing responses (2–3%) and the high number of open text responses (n = 6,347) suggest that the survey was accessible, comprehensible and relevant to the respondents. Reflecting on survey design, sampling, recruitment, response burden and multimodal participation, we argue that accessibility should be understood as a methodological principle that shapes inclusion throughout the research process. The findings support a staged approach to accessible survey design encompassing instrument development, pilot testing, recruitment and data collection, offering practical guidance for future research. While accessibility is particularly crucial when surveying disability organisations, it is essential in all survey studies to ensure validity, reliability and generalizability, as individuals with disabilities can be present in any sample.

The rapid digitalisation has transformed how individuals participate in society. In Sweden, one of Europe's most digitalised nations, being able to participate digitally is essential for societal integration. The aim of this study was to explore the experiences of older adults with impairment in Sweden with regard to their participation in the digital society. This study draws on data from the cross-sectional survey Swedes with impairment and the internet (SMFOI) undertaken in 2023. Using an explorative study design, responses from older adults (aged >= 65 years) with impairments were collected regarding perceived participation in the digital society. Data were analysed using mixed methods: descriptive statistics of questions with fixed response options and qualitative thematic analysis of free-text responses.Our findings highlight narratives of exclusion and opportunities, which older adults with impairment encounter as part of their digital participation in society. Our findings challenge binary perspectives of digital participation as being either included or excluded. Instead, our results show a more flexible and individualised approach to digital participation. We propose a four-quadrant framework that captures unique and multi-directional digital participation trajectories, showing that participation in a digital society is not binary but may be experienced as a complex and dynamic process with underlying tensions. Understanding individualised trajectories of digital participation, helps to unravel the complex interplay between age, impairment, and digitalisation, thus contributing to a more nuanced understanding of digital participation and exclusion dynamics.

People with intellectual disabilities experience poorer health than the general population, largely due to preventable non-communicable diseases. Although randomized controlled trials (RCTs) are the gold standard for evaluating health promotion interventions, they are rarely conducted with young people with intellectual disabilities because of inadequate research procedures. This methodological paper draws empirical insights from a research program and relevant literature involving co-design and an upcoming RCT of a digital health promotion intervention. Using the core RCT components, randomization, control, and trial procedures as an analytical framework, the paper integrates empirical experience and literature to examine challenges in conducting inclusive RCTs. Participation and accessibility emerged as overarching methodological considerations influencing recruitment, retention, engagement, statistical power, generalizability, and overall trial validity. Empirical experiences illustrated how relational, organizational, and methodological adaptations can address these challenges in practice. By combining evidence from the literature with empirically grounded strategies developed across the research program, this paper advances more inclusive and feasible RCT methodology for research involving young people with intellectual disabilities.

This study describes the development of a three-step method called Participatory Research through Design using a co-design and dialogue approach to enhance cognitive accessibility in eHealth services in public healthcare. The method is a combination of Participatory Design, Participatory Action Research and Research through Design (RtD). Together with participants with lived experiences of cognitive impairments we explored the existing personal eHealth services with Participatory Cognitive Barrier Walkthrough and co-designed a prototype for enhanced cognitive accessibility. We used an explorative study design constructing the prototype that presents the preferred state, where the participants’ contributions are embedded in the design (e.g., visualization of high-cost protection for healthcare, notifications, read aloud functionality, and photos of drugs). The ownership of the targeted eHealth services was outside the research project, and the co-designed prototype was used as a dialogue tool with stakeholders from the product owner perspective. We propose that our Participatory RtD approach enhances understanding of end-user perspectives in a given context and promote dialogue around complex eHealth services.

The aim of this study was to describe prerequisites for online collaboration for user participation in co-design of online digital services as perceived by people with impairments and to develop requirements for how online collaboration should be designed to be accessible for all participants. An exploratory study was conducted in parallel to activities in two co-design projects. Researchers, accessibility experts, designers and 31 members of disability organisations participated. All participants had lived experience of impairments. Data was co-analysed by all participants using a qualitative thematic analysis with an inductive approach. Sixty-three requirements for accessible online collaboration were identified pertaining to four themes: digital tools and accessibility; preparation of an online collaboration activity; performing and participating in an online collaboration activity; and documenting and evaluating an online collaboration activity. Conclusion: the co-design process can be strengthened by transition to online collaboration, owing to the possibility of having more frequent interaction, economising the participants’ energy and the design process being more transparent. Using accessible online tools, careful planning, and meeting preparation, and establishing a trustful and convivial atmosphere during each activity, are the cornerstones for accessible online collaboration. People with impairment can participate in online collaboration if the activities meet accessibility requirements.

Conversational agents are increasingly being introduced in healthcare to enhance access to healthcare and address limited healthcare resources. The aim of this study was to explore experiences of a conversational agent for symptom checking and triage tool assessing the urgency and appropriate level of care implemented in public healthcare from a cognitive accessibility perspective.With a Participatory Action Research approach this study includes: 1) A Participatory Cognitive Barrier Walkthrough in workshops with people with cognitive impairment (n=7), product owner representatives (n=4), and researchers (n=5), followed by a workshop for improvement suggestions; 2) A paired interview with healthcare system specialists (n=2).The data from the study was analysed using reflexive thematic analysis, resulting in five themes: ‘The design of the eHealth service created expectations that were not met during interaction; ‘The eHealth service uses a difficult language’; ‘The eHealth service trigger negative emotions and reactions’; ‘The layout and graphic design of the eHealth service is difficult and sometimes misleading’; and ‘The eHealth service lack in trustworthiness’. The findings show the importance of including people with lived experience of cognitive impairment, to expose and find solutions for cognitive accessibility issues

Background: The adoption of eHealth accelerated during the COVID-19 pandemic. Inequalities in the adoption of eHealth during the COVID-19 pandemic have been reported, but there are few such studies among people with impairment. Objectives: This study aimed to investigate self-reported use and difficulty in the use of eHealth before the COVID-19 pandemic compared to during late social distancing restrictions in Sweden, among people with and without impairment, as well as between different types of impairment. Methods: A cross-sectional survey was distributed twice by snowball sampling to people with self-reported impairment and a general population matched by age, gender, and county. Use and difficulty in the use of six eHealth services were compared between groups using chi-square test and logistic regression with year interaction terms, reported as odds ratio adjusted (aOR) for gender and age with 95% CI. Results: The surveys included 1631 (in 2019) and 1410 (in 2021) participants with impairment, and 1084 (in 2019) and 1223 (in 2021) participants without. Participants with impairment, compared to those without impairment, reported less use and more difficulty in booking health care appointments online, digital identification, and the Swedish national web portal for health information and eHealth services (1177.se), both before and during the pandemic (P = .003 or lower). Video health care appointments were the exception to this disability digital divide in eHealth as video appointment adoption was the most likely among participants with attention, executive, and memory impairments (interaction term aOR 2.10, 95% CI 1.30‐3.39). Nonuse and difficulty in the use of eHealth were consistently associated with language impairments and intellectual impairments. For example, language impairments were inversely associated with use of the logged-in eHealth services in 1177.se in 2021 (aOR 0.49, 95% CI 0.36‐0.67) and were associated with difficulty in the use of 1177.se in 2019 (aOR 2.24, 95% CI 1.50‐3.36) and the logged-in eHealth services in 1177.se in 2021 (aOR 1.89, 95% CI 1.32‐2.70). Intellectual impairments were inversely associated with the use of the logged-in eHealth services in 1177.se in 2021 (aOR 0.19, 95% CI 0.13‐0.27). Conclusions: This repeated cross-sectional survey study, including participants with diverse types of impairment and a control group without impairment, reveals persisting disability digital divides, despite an accelerated adoption of eHealth across the pandemic. eHealth services were not accessible to some groups of people who were identified as being at risk of severe disease during the COVID-19 pandemic. This implies that all people could not use eHealth as a measure of infection protection.

Accessible design enables participation in the digital society for everyone. However, cognitive accessibility is not well established within the field of web design. The International Classification of Functioning, Disability and Health (ICF) provides a descriptive framework that relates health conditions to functioning and participation. ICF Core Sets are purposefully tailored shortlists of ICF categories for describing functioning. The aim of this study was to develop an ICF core set for cognitive web accessibility to be used by web designers. ICF categories with relevance for cognitive accessibility were extracted and linked to the guidelines in the standard for cognitive accessibility: ISO 21801-1, followed by interpretation of the meaning of the ICF categories in relation to cognitive accessibility. The latter was outlined as practical advice for designers on design considerations for cognitive accessibility. The analysis was performed by an iterative back-and-forth process between the lived experiences of persons with cognitive impairments, the ISO-standard and the ICF. The ICF core set comprises 46 ICF categories with design considerations for cognitive accessibility. The ICF core set is suggested to facilitate understanding of the challenges in digital design that users experience and provide strategies to address cognitive accessibility, and thereby improve design outcomes.

Swedish Sign Language [svenskt teckenspråk, STS] has often been described as being the first officially recognised sign language in the world, passed into law in 1981. This was a parliamentary decision that later led to the provision of bimodal-bilingual education and the keeping of a separate school system for deaf students. However, today, STS is not granted the same rights as the five declared minority languages and not all deaf children in Sweden are being granted access to an education in STS. So, what exactly was decided by the Swedish Parliament in 1981? This critical discourse analysis shows that Swedish legislative documentation regarding STS, rests on unclear intertextual referencing, common-sense implied agreements, and discursive discrimination through linguicism and ableism, specifically audism. The legislative discourses studied reveal an accommodating ambition by the political actors, which is simultaneously ambiguous, non-binding, and leaves open many possible interpretations.

“Digital participation” refers to being actively involved in the digital society and using information and communication technology, above all the internet. However, not everyone has access to this global network and the ability to use it. The aim of the study was to explore experiences of using the internet and digital participation among people with aphasia (PWA) in Sweden by analysing data from an online survey undertaken in 2021. Methods & Procedures: The study has a descriptive design using mixed methods. Sixty-four participants with self-reported aphasia and a reference group of 1116 members of the general public answered the same survey with questions related to internet use and the digital society. Answers from both groups to ten multiple-choice questions were analysed statistically, and the PWA’s answers to eleven open-ended questions were analysed using reflexive thematic analysis. Outcomes & Results: Quantitatively, the analysis showed that answers concerning internet use differed statistically significantly between the two groups. Qualitatively, the analysis identified two themes: “The internet imposes heavy demands” and “The internet provides opportunities”, with various sub-themes. Conclusions: PWA described how the internet is very demanding. However, they also reported positive experiences and confidence in the potential of the technology. Even so, the internet can be exclusionary, and it is important to ensure that facilitating factors are considered in the development of technology and technology-mediated communication, so that communication opportunities for PWA and others will be enhanced.