On 6 October we are celebrating the first European Carers Day. In different languages we are sending the same message:
Informal carers are unpaid carers.
They are essential for sustainability of long-term care.
They deserve better support!
As the largest pillar of care, informal carers (a carer is a person who provides usually unpaid care to someone with a long-term illness, disability or other long-lasting health or care need, outside a professional or formal framework) provide around 80% of all care across Europe. In Slovenia, their share is even higher. According to a survey based on SHARE, in 2013 75.5% of people aged 65 and over who received home care received only informal care, 6.7% formal care and 17.8% received a combination of both forms of care. Let us add that Slovenia is one of the least carer-friendly European countries according to EUROCARERS, the European Association Working for Carers, although many other European countries are facing a challenge to improve the support to informal carers.
The Slovenian Active Ageing Strategy states that there is a need to "improve support for informal carers and their integration into the long-term care system (p. 48)". An EU Strategy to support and empower informal carers also calls for the support for informal carers. It aims to define ten key steps identified by the Eurocarers network to create a carer-friendly policy environment aimed at recognising, supporting and empowering informal carers across Europe in a comprehensive and coherent way. Among other things, it calls for the provision of services and support directly at carers, from respite care to ICT-based solutions. Eurocarers pays particular attention to the potential of ICT-based solutions to support informal providers. In their recent publication, they state that "most ICT-based solutions are proving very useful to address the needs and improve the quality of life of both informal carers and the persons they care for«.
In the Center for Social Informatics at the Faculty of Social Sciences, University of Ljubljana (CSI -FSS-UL), we have been working for many years to increase policy makers' support for ICT-based solutions and the introduction of ICT-based solutions into health and social care. We are also aware of the potential of fully operational ICT-based solutions. Through several intervention studies in different population groups, we have demonstrated the positive effects of using fully functional ICT-based solutions for long-term care on both informal carers and the older people. For example, in a study conducted between 2018–2019 in the Central Slovenian region among working family carers of older people, we found that positive outcomes of telecare use for working carers are far more prevalent than negative outcomes. The most frequently reported positive psychological outcome was reassurance, followed by peace of mind and reduced anxiety. In addition, family carers mentioned several other positive psychological outcomes of telecare use, including an increased sense of control, reduced stress, feeling less burdened etc. We are also testing the innovative solutions and evaluate the acceptance and the outcomes of their use for informal carers and older people (e.g. projects i-evAALution: integrating and evaluating AAL solutions (AAL Joint Programme) and Factors impacting intention to use smart technology enabled care services among family carers of older people in the context of long-distance care (Slovenian Research Agency), Understanding and analysis of users' needs for the development of e-services for integrated social and health care in the aging society (Slovenian Research Agency). In a randomised control trial conducted in Slovenia, Italy, the Netherlands and Austria, we found that in the pre-intervention phase, safety and service functionalities as well as professional help with setting up and maintaining the technologies were rated highest on average by informal carers. In the recent scoping study we found the following pre-intervention acceptance factors: benefit of the technology (e.g. operational support in caregiving tasks), costs, ethical issues, device and service characteristics, care situation (e.g. social policy for care), characteristics of the carer (e.g. age, knowledge of ICT), perceived need to use the solution, and the influence of older persons. The most frequently mentioned post-intervention acceptance factors among informal carers were: Technology benefits (e.g., operational support for care tasks, positive psychological outcomes of ICT use), device and service characteristics, care situation (i.e., characteristics and needs of older person) and influence of older persons (perceived benefits and concerns about ICT use).
CSI -FSS-UL is involved in the international projects (e.g. Interreg Europe ITHACA, COOP4HEALTHCARE - Interreg SI-AT, D-CARE - Interreg) in which we investigate structural barriers to the diffusion of ICT-based technologies and strive to promote smart health and e-Care services and we encourage the support for such services by policy-makers. Our survey showed that Slovenia scores lowest among the regions studied in terms of Smart Health and Care, as both political support and innovation support services in the country are low. We have recently presented amendments to the Long-Term Care Act, which relate to the introduction of ICT-based long-term care services, strengthening community-based care and enabling greater support for informal carers. As evaluators, we also participate in two projects (The evaluation of the pilots supporting the transition to the implementation of the long-term care system, Evaluation of the project Transformation of existing networks and entry of new providers to provide community-based services and programs for older people) in which we examine, among other things, the outcomes of the use of new services (e.g. ICT-based solutions) and the attitudes of the older persons, informal carers and service providers towards them.