Including intellectual disability in participatory design processes: Methodological adaptations and supports

González, Herbert Spencer; Córdova, Vanessa Vega; Cid, Katherine Exss; Azagra, Marcela Jarpa; Álvarez‐Aguado, Izaskun

doi:10.1145/3385010.3385023

Cited by 29 publications

(4 citation statements)

References 22 publications

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“…Although all relevant stakeholders that participants could think of were identified during the workshop and participants were asked to keep them all in mind, some perspectives may be missing in the results. Including people with disabilities requires special attention, as this is not common in the co-design or cocreation of digital care technologies [ 46 ]; however, this is upcoming [ 13 , 47 , 48 ]. To improve stakeholder inclusion in general, it may be useful to consult “design principles” for stakeholder engagement [ 49 ].…”

Section: Discussionmentioning

confidence: 99%

Action Opportunities to Pursue Responsible Digital Care for People With Intellectual Disabilities: Qualitative Study

Siebelink,

van Dam,

Lukkien

et al. 2024

JMIR Ment Health

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Background Responsible digital care refers to any intentional systematic effort designed to increase the likelihood of a digital care technology developed through ethical decision-making, being socially responsible and aligned with the values and well-being of those impacted by it. Objective We aimed to present examples of action opportunities for (1) designing “technology”; (2) shaping the “context” of use; and (3) adjusting the behavior of “users” to guide responsible digital care for people with intellectual disabilities. Methods Three cases were considered: (1) design of a web application to support the preparation of meals for groups of people with intellectual disabilities, (2) implementation of an app to help people with intellectual disabilities regulate their stress independently, and (3) implementation of a social robot to stimulate interaction and physical activity among people with intellectual disabilities. Overall, 26 stakeholders participated in 3 multistakeholder workshops (case 1: 10/26, 38%; case 2: 10/26, 38%; case 3: 6/26, 23%) based on the “guidance ethics approach.” We identified stakeholders’ values based on bottom-up exploration of experienced and expected effects of using the technology, and we formulated action opportunities for these values in the specific context of use. Qualitative data were analyzed thematically. Results Overall, 232 effects, 33 values, and 156 action opportunities were collected. General and case-specific themes were identified. Important stakeholder values included quality of care, autonomy, efficiency, health, enjoyment, reliability, and privacy. Both positive and negative effects could underlie stakeholders’ values and influence the development of action opportunities. Action opportunities comprised the following: (1) technology: development of the technology (eg, user experience and customization), technology input (eg, recipes for meals, intervention options for reducing stress, and activities), and technology output (eg, storage and use of data); (2) context: guidelines, training and support, policy or agreements, and adjusting the physical environment in which the technology is used; and (3) users: integrating the technology into daily care practice, by diminishing (eg, “letting go” to increase the autonomy of people with intellectual disabilities), retaining (eg, face-to-face contact), and adding (eg, evaluation moments) certain behaviors of care professionals. Conclusions This is the first study to provide insight into responsible digital care for people with intellectual disabilities by means of bottom-up exploration of action opportunities to take account of stakeholders’ values in designing technology, shaping the context of use, and adjusting the behavior of users. Although part of the findings may be generalized, case-specific insights and a complementary top-down approach (eg, predefined ethical frameworks) are essential. The findings represent a part of an ethical discourse that requires follow-up to meet the dynamism of stakeholders’ values and further develop and implement action opportunities to achieve socially desirable, ethically acceptable, and sustainable digital care that improves the lives of people with intellectual disabilities.

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Section: Discussionmentioning

confidence: 99%

Action Opportunities to Pursue Responsible Digital Care for People With Intellectual Disabilities: Qualitative Study

Siebelink,

van Dam,

Lukkien

et al. 2024

JMIR Ment Health

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“…Such top-down and allistic, or non-autistic, approaches emphasise curative violence that erases autistic and intellectually/developmentally disabled (I/DD) users and creators (Williams, et al, 2021;Rauchberg, 2022). These approaches, which fail to draw on extensive experience in engaging people with disabilities as partners in participatory design (Louw, 2017;Spencer González, et al, 2020), wrongfully assume that I/DD people do not have agency in their insights on technology creation or user experiences, and reinforce the ableist idea that only non-disabled people are valued as technologists or users. Similarly, AI-powered hiring algorithms may fail to recognize disabled ways of living and working, furthering the exclusion of disabled people from the workforce (Kelly-Lyth, 2021; Tilmes, 2022; U.S.…”

Section: The Need To Interrogate Ideology In Ai Developmentmentioning

confidence: 99%

Definition drives design: Disability models and mechanisms of bias in AI technologies

Newman-Griffis¹,

Rauchberg²,

Alharbi³

et al. 2023

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The increasing deployment of artificial intelligence (AI) tools to inform decision-making across diverse areas including healthcare, employment, social benefits, and government policy, presents a serious risk for disabled people, who have been shown to face bias in AI implementations. While there has been significant work on analysing and mitigating algorithmic bias, the broader mechanisms of how bias emerges in AI applications are not well understood, hampering efforts to address bias where it begins. In this article, we illustrate how bias in AI-assisted decision-making can arise from a range of specific design decisions, each of which may seem self-contained and non-biasing when considered separately. These design decisions include basic problem formulation, the data chosen for analysis, the use the AI technology is put to, and operational design elements in addition to the core algorithmic design. We draw on three historical models of disability common to different decision-making settings to demonstrate how differences in the definition of disability can lead to highly distinct decisions on each of these aspects of design, leading in turn to AI technologies with a variety of biases and downstream effects. We further show that the potential harms arising from inappropriate definitions of disability in fundamental design stages are further amplified by a lack of transparency and disabled participation throughout the AI design process. Our analysis provides a framework for critically examining AI technologies in decision-making contexts and guiding the development of a design praxis for disability-related AI analytics. We put forth this article to provide key questions to facilitate disability-led design and participatory development to produce more fair and equitable AI technologies in disability-related contexts.

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“…Developing technologies that comprehensively meet the needs and abilities of people with intellectual disabilities is not a trivial matter. As end users, all individuals should participate in the design and evaluation of products [5,6,13,16,30,31,33,34], yet traditional co-design and user-centred methods often rely upon a standardised set of participant skills, which may not reflect those employed by the individuals to express themselves or conceptualise their experiences, or for which participation may be conditioned by adjustments [18]. Without guidance and reassurance from the community, researchers may not feel competent to engage people with intellectual disability in the co-design process [28]; this may also be a result of their inability to relate to the life experiences of participants [18].…”

Section: Designing With People With Intellectual Disabilitiesmentioning

confidence: 99%

Designing with and for People with Intellectual Disabilities

Guedes

Gibson

Ellis

et al. 2022

Proceedings of the 24th International ACM SIGACCESS Conference on Computers and Accessibility

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People with intellectual disabilities often experience inequalities that affect the standard of their everyday lives. Assistive technologies can help alleviate some of these inequalities, yet abandonment rates remain high. This is in part due to a lack of involvement of all stakeholders in their design and evaluation, thus resulting in outputs that do not meet this cohort's complex and heterogeneous needs.The aim of this half-day workshop is to focus on community building in a field that is relatively thin and disjointed, thereby enabling researchers to share experiences on how to design for and with people with intellectual disabilities, provide internal support, and establish new collaborations. Workshop outcomes will help to fill a gap in the available guidelines on how to include people with intellectual disabilities in research, through more accessible protocols as well as personalised and better fit-for-purpose technologies.CCS Concepts: • Human-centered computing → Mixed / augmented reality; Accessibility design and evaluation methods; User studies; • Social and professional topics → People with disabilities.

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Including intellectual disability in participatory design processes: Methodological adaptations and supports

Cited by 29 publications

References 22 publications

Action Opportunities to Pursue Responsible Digital Care for People With Intellectual Disabilities: Qualitative Study

Action Opportunities to Pursue Responsible Digital Care for People With Intellectual Disabilities: Qualitative Study

Definition drives design: Disability models and mechanisms of bias in AI technologies

Designing with and for People with Intellectual Disabilities

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