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The European Training Network on Informal Care

Periodic Reporting for period 1 - ENTWINE (The European Training Network on Informal Care)

Reporting period: 2018-09-01 to 2020-08-31

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 aim 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 details 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). Specifically, we invite caregivers and care recipients in 9 countries with different care systems to complete several questionnaires (i.e. a baseline questionnaire, weekly assessments, and a follow-up questionnaire) over a period of six months. This method provides insight into changes over time in willingness and ability to provide care, and caregiver and care recipient wellbeing. These changes will be studied in relation to care tasks and context, formal and economic support available and received, geographical challenges, cultural and social aspects, and aspects of the relationship between caregivers and their care-recipients. The results of this collaborative study will help to establish who needs support, what kind and when.

WP2 examines (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. Methods include usability testing (i.e. examining user-friendliness), experiments and persuasive profiling (i.e. tailoring interventions and services to specific users or user groups). WP 2 outcomes will be translated into practical digital tools to help reduce caregivers’ burden while taking into account their unique personality, relationship, cultural background, and diversity.

WP3 examines the implementation and dissemination of innovative technology-based tools and interventions aimed to support informal caregiving. More specifically, barriers and facilitators for implementation will be examined to help further facilitate the adoption of these tools and interventions more widely. To reach this goal, we will follow an agile science approach, involving end-users and other stakeholders in an iterative process of frequent structured communication, data collection and examination. The expected result is an implementation framework for informal care, to use in practice and research.
WP1: Investigating willingness to care
The five ESRs in WP1 collaborate in the ENTWINE iCohort study, and carry out individual systematic reviews and/or national studies.
The ENTWINE iCohort has received ethical approval or a waiver in seven countries (Greece, Ireland, Israel, Italy, Poland, the Netherlands, UK), and two applications are pending (Germany and Sweden). All questionnaires have been translated into the appropriate languages and piloted. Data collection has started in five countries and starts soon in the remaining countries. Recruitment is taking place online via social media and our website (https:/ mailings to organisations in health and social care, poster and flyer distributions, and press advertising. At this moment, 359 caregivers, 72 care recipients (including 5 dyads) have entered the study.
Three systematic reviews have been registered on PROSPERO and are in progress. Two further articles have been published with respect to geographical issues and migrant care.

WP2: Designing solutions for informal care
The five ESRs in WP2 have been working on projects focused on (1) how caregivers disclose their emotions and needs to social robots, and how these, can reduce caregivers’ stress and burden; (2) the development of a novel dyadic intervention protocol and on its adaptation to an internet-based intervention, in order to support informal caregivers; (3) the development of a digital technique, in the form of interactive video storytelling that will help informal caregivers better self-manage their role-related stress; (4) the design of eHealth tools for informal caregivers while considering different groups of informal caregivers; (5) the use of persuasive design elements to develop an e-coaching system for informal caregivers with a focus on culture.
The ESRs have published several papers: on disclosures to social robots, mental digital health tools, transformative storytelling for improving informal caregivers’ mental wellbeing, and an internet-based intervention for informal caregivers. Additional reviews have been registered on PROSPERO.

WP3: Implementing novel technology-based solutions
The five ESRs in WP3 have been working on (1) exploring the main benefits and challenges in the use of the real-life tool InformCare; (2) developing the maturity implementation model to upscale technologies in practice; (3) using an agile science approach to design unobtrusive technology to support elderly at home; (4) the adaptation and examination of the feasibility and acceptability of an eHealth solution within varying real-world practice contexts; and (5) evaluating the effectiveness, acceptance, and feasibility of an Internet intervention program for reducing caregiver burden in informal caregivers in Lithuania.
The ESRs have published several papers: on challenges and recommendations for deploying ICT systems for informal caregivers, on the implementation of unobtrusive technologies for elderly care, on the implementation of e-mental health interventions for informal caregivers of adults with chronic diseases.

All ESRs have presented their work at national and international conferences, targeting different audiences (e.g. the scientific public, car organisations, and policy makers).
The ENTWINE project will lead to insights in current and future caregiving challenges and motivations of diverse groups of informal caregivers and care recipients, and the society, in different countries. It will describe if, and how, the studied interventions, services and technology-based interventions are helpful to support caregivers. Also, the project is expected to describe helpful implementation and dissemination strategies. Together, this is expected to lead to a better understanding of and solutions to support caregivers in Europe.
Figure 1. The care gap