WP1: Investigating willingness to care
The WP1-projects show that (1) caregiver motivation/willingness to care is generally high, independent on caregiver support policies and country culture; (2) how much caregivers are willing to care plays an important role in their well-being and burden, but is more important for those living together with the person they care for than those living far away; (3) interactions between caregivers and their care recipients, such as caregivers’ open communication and collaboration with the care recipient and care recipients’ acknowledgement and appreciation, are important for caregivers’ willingness to care; (4) informal caregiving leads to high economic costs such as time loss, decreased productivity, and out-of-pocket expenses for caregivers; and (5) hiring of a care worker did not result in informal caregivers completely giving up their role as a caregiver and instead, but care workers and informal caregivers sharing care responsibilities.
WP2: Designing solutions for informal care
The WP2-projects show (1) that caregivers are willing to interact and disclose intimate information with a social robot; (2) that very few Italian caregivers receive any formal support and are willing to try internet-based interventions, which sets the stage for dyadic internet-based interventions; (3) the development of the Voice me out platform hosting audio recorded and gender adapted stories of informal caregivers, and that briefly listening to these audio narratives lowered subjective caregiver burden; (4) differences in the needs of caregivers taking care of a partner, parent or sibling in general, and the specific needs of young adult caregivers towards a digital support tool; and (5) the development of a prototype of an online coaching system (the app AnhörigCare) for informal caregivers and provided prescriptive guidelines for designing e-coaching systems for different cultural contexts.
WP3: Implementing novel technology-based solutions
The WP3-projects show (1) that challenges in the use of ICT-based services were related to technological components of the service, and to organizational, socioeconomic, and ethical challenges; (2) that most of the identified factors influencing implementation of technologies to support dementia caregivers related to the condition of dementia, characteristics of the technology, expected/perceived value of users, and characteristics of the informal caregiver, but information on factors related to the implementing organization, technology supplier, wider institutional and sociocultural context, and adaptation of technology over time was lacking; (3) gained insight in the issues and possible solutions for implementation of unobtrusive sensing technology to support informal caregivers and developed a prototype of a sensor-enabled information communication platform; (4) that caregivers of people with kidney conditions preferred internet or workbook based programmes including information about support services and living with a kidney condition, and that caregivers wanted support in using the intervention by a trained professional; and (5) that an eight-week online intervention for psychological health support can reduce informal caregiver burden, depression, anxiety, stress and increase quality of life, and is perceived acceptable for Lithuanian informal caregivers.
The developed and/or tested prototypes and digital solutions are available (e.g. the Voice me out platform, the prototype of AnhörigCare). All ESRs have presented their work at national and international conferences targeting different audiences such as the scientific public, caregivers, care organisations, and policy makers. In addition, project outcomes have been disseminated via the website (
https://entwine-itn.eu/(s’ouvre dans une nouvelle fenêtre)) and social media channels (e.g. Twitter, Facebook). Project members also shared information about their projects in newspaper articles, collaborated in writing a policy briefing disseminated via the European caregiver-related organisations network (Eurocarers) or participated in a podcast.
