Periodic Reporting for period 2 - ENTWINE (The European Training Network on Informal Care)
Reporting period: 2020-09-01 to 2023-02-28
Mostly due to increased longevity and medical advances, the needs of older/ill individuals for long-term care rise rapidly, while the availability of informal caregivers decreases. Informal caregivers are those who provide unpaid care to a relative or friend with a chronic illness, disability or other long-lasting health or care need. This “Care Gap” will create huge problems for the sustainability of European health care systems that rely heavily on the provision of informal care (see Figure 1). ENTWINE is a consortium consisting of academic partners with expertise in, for example, psychology, sociology, and economics, and non-academic partners including IT specialists, e-health developers, and policy makers. Together we aimed to investigate all kinds of issues related to the sustainability of informal care and the development and use of innovative psychosocial and technology-based interventions that support the willingness and opportunity to provide informal care.
WP1 examined the current and future caregiving challenges and motivations for diverse groups of informal caregivers and their care recipients across Europe by means of an intensive longitudinal cohort study (ENTWINE iCohort Study).
WP2 examined (1) whether specific psychosocial and technology-based services (e.g. internet platforms) and interventions (e.g. eHealth and social robots) could empower caregivers and reduce their burden, and if so, (2) how best to deliver these interventions, services and tools to sustain willingness to care, experience optimal outcomes of their role, and improve quality of life amongst informal caregivers.
WP3 examined the implementation and dissemination of innovative technology-based tools and interventions aimed to support informal caregiving.
Overall, this project results in an understanding of caregivers’ motivations and willingness to care and the notion that these fluctuate over time. It also highlights the importance of focusing on the collaboration and communication between caregivers and patients, and the influence of personality and geographical distance on the caregiving experience. Psychosocial and technology-based solutions can support informal caregivers by helping them to self-disclose or decrease levels of burden. Such solutions should however take into account the specific needs of different groups of caregivers (e.g. based on type of relationship with the care recipient, age, culture). Also, factors related to the context, such organizational systems, socioeconomic factors, or sociocultural context in which the solution are to be implemented, should be taken into account in order to successfully implement these solutions in practice.
WP1 examined the current and future caregiving challenges and motivations for diverse groups of informal caregivers and their care recipients across Europe by means of an intensive longitudinal cohort study (ENTWINE iCohort Study).
WP2 examined (1) whether specific psychosocial and technology-based services (e.g. internet platforms) and interventions (e.g. eHealth and social robots) could empower caregivers and reduce their burden, and if so, (2) how best to deliver these interventions, services and tools to sustain willingness to care, experience optimal outcomes of their role, and improve quality of life amongst informal caregivers.
WP3 examined the implementation and dissemination of innovative technology-based tools and interventions aimed to support informal caregiving.
Overall, this project results in an understanding of caregivers’ motivations and willingness to care and the notion that these fluctuate over time. It also highlights the importance of focusing on the collaboration and communication between caregivers and patients, and the influence of personality and geographical distance on the caregiving experience. Psychosocial and technology-based solutions can support informal caregivers by helping them to self-disclose or decrease levels of burden. Such solutions should however take into account the specific needs of different groups of caregivers (e.g. based on type of relationship with the care recipient, age, culture). Also, factors related to the context, such organizational systems, socioeconomic factors, or sociocultural context in which the solution are to be implemented, should be taken into account in order to successfully implement these solutions in practice.
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/) 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.
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/) 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.
The ENTWINE project generated new high-quality knowledge, which has been shared with the scientific community via Open Access peer-reviewed publications, and via national and international conferences targeting diverse stakeholders. The project offered psychosocial and technology-based support options for caregivers, and resulted in inputs for health and care policy. The Network-wide Training Program has trained ESRs in a range of transferable skills, shown by the diversity in jobs ESRs obtained after their ESR projects. Overall, the project has improved our understanding of informal care considerably and will continue to lead to solutions to support informal caregivers in Europe.