Action opportunities to pursue responsible digital care for people with intellectual disabilities: Qualitative study (preprint)

Background:
Responsible digital care refers to ‘including 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 wellbeing of those impacted by it’.

Objective:
We aim to present examples of action opportunities for a) the design of ‘Technology’; b) shaping the ‘Context’ of use; and c) adjusting the behaviour of the ‘Users’, to guide the responsible use of digital care for persons with intellectual disabilities (ID).

Methods:
Three cases: 1) design of a web app to support preparing meals for groups of persons with ID; 2) implementation of an app to help persons with ID regulate their stress independently; 3) implementation of a social robot to stimulate interaction and physical activity among persons with ID. Twenty-six stakeholders participated in three multi-stakeholder workshops (n=10; 10; 6 for case 1, 2 and 3, respectively) based on the ‘guidance ethics approach’. Stakeholders’ values were identified based on bottom-up exploration of experienced and expected effects of using the technology, and action opportunities were formulated to account for these values in the specific context of use. Qualitative data were thematically analysed.

Results:
In total, 232 effects, 33 values and 156 action opportunities were collected. General and case-specific themes were identified. Important stakeholders’ 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 a) Technology: development of the technology (e.g. optimise user experience, customisation), technology input (e.g. recipes for meals; intervention options for reducing stress; activities, for case 1, 2 and 3, respectively) and technology output (e.g. storage and use of data); b) Context: guidelines, training and support, policy/agreements, and adjusting the physical environment in which the technology is used; c) User: integrating the technology use into daily care practice, by diminishing (e.g. ‘letting go’ to increase autonomy of persons with ID), keeping (e.g. face-to-face contact), and adding (e.g. evaluation moments) certain behaviours of care professionals.

Conclusions:
This is the first study to provide insight into responsible digital care for persons with ID, by means of bottom-up exploration of action opportunities to take account of stakeholders’ values in designing technology, shaping context of use, and adjusting behaviour of users. While part of the findings may be generalised, case-specific insights are essential, as well as a complementary top-down approach (e.g. applying predefined ethical frameworks). The findings represent a start/part of an ethical discourse that requires follow-up to meet the dynamism of stakeholders’ values and to further develop and implement action opportunities to achieve socially desirable, ethically acceptable and sustainable digital care that improves the lives of people with disabilities.