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

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.

Sleep-wake monitoring of people with intellectual disability: Examining the agreement of EMFIT QS and actigraphy.

BACKGROUND: Gaining insight into sleep-wake patterns of persons with intellectual disabilities is commonly done using wrist actigraphy. For some people, contactless alternatives are needed. This study compares a contactless bed sensor with wrist actigraphy to monitor sleep-wake patterns of people with moderate to profound intellectual disabilities. METHOD: Data were collected with EMFIT QS (activity and presence) and MotionWatch 8/Actiwatch 2 (activity, ambient light, and event marker/sleep diary) for 14 nights in 13 adults with moderate-profound intellectual disabilities residing in intramural care. RESULTS: In a care-as-usual setting, EMFIT QS and actigraphy assessment show little agreement on sleep-wake variables. CONCLUSION: Currently, EMFIT QS should not be considered an alternative to wrist actigraphy for sleep-wake monitoring. Further research is needed into assessing sleep-wake variables using (contactless) technological devices and how the data should be interpreted within the care context to achieve reliable and valid information on sleep-wake patterns of people with intellectual disabilities.

The impact of assistive living technology on perceived independence of people with a physical disability in executing daily activities: a systematic literature review.

PURPOSE: People with physical disabilities often require lifetime support and experience challenges to maintain or (re)define their level of independence. Assistive living technologies (ALT) are promising to increase independent living and execution of activities of daily living (ADL). This paper provides a systematic literature review that aims to analyse the present state of the literature about the impact of ALT on perceived independence of people with a physical disability receiving long-term care. MATERIALS AND METHODS: Databases Embase, Medline, and Web of Science were searched for eligible studies from 2010 or later. RESULTS: Nine studies were included, of which seven qualitative, one quantitative, and one mixed methods. Quality was generally high. ALT enabled participants to execute ADL. We found six themes for the impact of ALT on perceived independence: feeling enabled, choice and control, feeling secure, time alone, feeling less needy, and participation. CONCLUSIONS: ALT appears to impact perceived independence in many ways, exceeding merely the executional aspect of independence. Existing research is limited and quite one-sided. More large-scale studies are needed in order to inform care organisations how to implement ALT, especially considering societal developments and challenges impacting long-term care.IMPLICATIONS FOR REHABILITATIONPeople with a physical disability receiving long-term care experience that assistive living technology impacted their independence.Their independence is increased by making them feel enabled, secure, and less needy and increasing their choice and control, time alone, and participation.Most studies focused on the use of environmental control systems by people with spinal cord injury.More research is needed to evaluate long-term effects of diverse assistive living technologies used by people with a physical disability receiving long-term care.

Experiences of Persons With Executive Dysfunction in Disability Care Using a Social Robot to Execute Daily Tasks and Increase the Feeling of Independence: Multiple-Case Study.

BACKGROUND: Executive functions are essential for independently navigating nearly all of our daily activities. Executive dysfunction often occurs as a result of a neurodevelopmental disorder. Persons with executive dysfunction experience challenges regarding independent execution of daily tasks. Social robots might support persons with executive dysfunction to execute daily tasks and promote their feeling of independence. OBJECTIVE: This study aimed to study the impact of interacting with social robot Tessa on goal attainment in the execution of daily tasks and perceived independence of persons with executive dysfunction. METHODS: In this multiple-case study, 18 participant-caregiver couples were followed up while using Tessa in the home environment for 3 months. Goal attainment on independently performing a self-determined goal was measured by the Goal Attainment Scale, and participant-caregiver couples were interviewed about their experience with their interaction with Tessa and how they perceived Tessa's impact on their independence. RESULTS: In total, 11 (61%) participants reached their goal after 6 weeks and maintained their goal after 3 months. During the study period, 2 participant-caregiver couples withdrew because of mismatch with Tessa. Participants set goals in the following domains: execution of household tasks; intake of food, water, or medication; being ready in time for an appointment; going to bed or getting out of bed on time; personal care; and exercise. Participants perceived that Tessa increased the feeling of independence by generating more structure, stimulation, and self-direction. Participant-caregiver couples reported that the auditive information provided by Tessa was more effective in coping with executive dysfunction compared to their initial approaches using visual information, and the use of Tessa had a positive impact on their relationship. CONCLUSIONS: This study paid ample time and attention to the implementation of a social robot in daily care practice. The encouraging findings support the use of social robot Tessa for the execution of daily tasks and increasing independence of persons with executive dysfunction in disability care.