Adolescent young carers (AYCs) face the challenges of adolescence while also having care responsibilities. Caring can negatively affect an adult carer's health, but there is less evidence on how caring affects AYCs, of whom there is little awareness among professionals. The aim of this survey study was to describe the AYCs' characteristics and investigate factors associated with their perceived health. School pupils aged 15-17 from 11 Swedish municipalities completed a questionnaire addressing caring activities, received support and perceived health. Of the 3,015 participants, 702 (23%) were AYCs. Female gender, having a parent with a health-related condition, mental illness in a family or non-family member, and addiction problems in a non-family member were associated with poorer perceived health, while receiving support with caring was associated with better perceived health. Identifying the factors associated with AYCs' perceived health can lead to appropriate support, but there also needs to be better representation of AYCs in policy.

Adolescent young carers (AYCs) are a sub-group of young carers who carry out significant or substantial caring tasks and assume a level of responsibility which would usually be associated with an adult. They are a potentially vulnerable group of minors because of the risk factors associated with their caring role. AYCs face a critical transition phase from adolescence to adulthood often with a lack of tailored support from service providers. The recently completed European funded ‘ME-WE’ project, which forms the focus of this paper, aimed to change the ‘status quo’ by advancing the situation of AYCs in Europe, via responsive research and knowledge translation actions. This paper outlines the participatory, co-creation approach employed in the project to optimise AYC’s involvement. It describes the ethical framework adopted by the project consortium to ensure the wellbeing of AYCs within all project activities. Ethical issues that arose in the field study work in all six countries are presented, followed by a discussion of the level of success or otherwise of the consortium to address these issues. The paper concludes with lessons learned regarding ethically responsible research with and for AYCs that are likely transferable to other vulnerable research groups and pan-European projects.

Young carers provide a substantial amount of care to family members and support to friends, yet their situation has not been actively addressed in research and policy in many European countries or indeed globally. Awareness of their situation by professionals and among children and young carers themselves remains low overall. Thus, young carers remain a largely hidden group within society. This study reports and analyses the recruitment process in a multi-centre intervention study offering psychosocial support to adolescent young carers (AYCs) aged 15–17 years. A cluster-randomised controlled trial was designed, with recruitment taking place in Italy, the Netherlands, Slovenia, Sweden, Switzerland and the United Kingdom exploiting various channels, including partnerships with schools, health and social services and carers organisations. In total, 478 AYCs were recruited and, after screening failures, withdrawals and initial dropouts, 217 were enrolled and started the intervention. Challenges encountered in reaching, recruiting and retaining AYCs included low levels of awareness among AYCs, a low willingness to participate in study activities, uncertainty about the prevalence of AYCs, a limited school capacity to support the recruitment; COVID-19 spreading in 2020–2021 and related restrictions. Based on this experience, recommendations are put forward for how to better engage AYCs in research.

Young carers are children and adolescents who provide care to other family members or friends, taking over responsibilities that are usually associated with adulthood. There is emerging but still scarce knowledge worldwide about the phenomenon of young carers and the impact of a caring role on their health, social and personal development spheres. This paper provides an overview of the main results from the ME-WE project, which is the first European research and innovation project dedicated to adolescent young carers (AYCs) (15–17 years). The project methods relied on three main activities: (1) a systematization of knowledge (by means of a survey to AYCs, country case studies, Delphi study, literature review); (2) the co-design, implementation and evaluation of a primary prevention intervention addressing AYCs’ mental health (by means of Blended Learning Networks and a clinical trial in six European countries); (3) the implementation of knowledge translation actions for dissemination, awareness, advocacy and lobbying (by means of national and international stakeholder networks, as well as traditional and new media). Project results substantially contributed to a better understanding of AYCs’ conditions, needs and preferences, defined tailored support intervention (resilient to COVID-19 related restrictions), and significant improvements in national and European policies for AYCs.

BACKGROUND: Many studies investigated factors associated with overuse of Emergency Department (ED) by older people. However, there is little evidence of how a better access to long-term care services can affect ED visit rates. Therefore, we estimated the association between ED use and contextual (distance to closest ED), need (priority level at admission and care deprivation), predisposing (socio-economic conditions) and enabling factors (availability of health services) at the municipal level.

METHODS: We investigated ED visit rates by comparing the older population (aged 75 and more) to those aged less than 75 years among 233 municipalities and 13 health districts in the Marche Region, Central Italy. Administrative data were enriched by spatial dimensions. The outcomes were analysed using t-tests and ANOVA, while OLS and multilevel regressions have been used to identify independent correlates of ED visit rates.

RESULTS: Mean ED visit rate was 56.3% and 25.3% among older people and the rest of the population (< 75 years), respectively. The multivariate analysis for older people showed that the presence of an ED within the municipality and living alone were positively associated with ED use, whereas greater availability of nursing homes was negatively associated. For general population (< 75 years), distance to closest ED, economic deprivation and bigger hospitals were negatively associated with ED visits.

CONCLUSIONS: Our study shows that interventions to reduce frequent ED use by older people should include the availability of long-term care facilities in the area. As population ageing is progressing, our results suggest that investing in alternative care options for older people with long-term care needs might have the beneficial impact of reducing the overall ED rates and improving quality and appropriateness of care.

The transition from traditional to progressively digitised health systems is leading to new forms of care including, for instance, telehealth and mobile health (mHealth) solutions. On the one hand, such solutions hold the potential for allowing easier, quicker and remote access to health care. On the other hand, digital health technologies can set new challenges for older people, especially for those who are not familiar with such technologies, in terms of receiving the care they need through good access and level of use of services. Furthermore, these services do not necessarily reflect everyone’s preferences and needs. This chapter aims to conceptualise and systematically discuss old-age digital health exclusion. First, we highlight key structural, environmental, individual and socio-technical drivers of the non-use and low-use of digital technologies, considering also the aspect of agency and personal preferences. Second, we point out the main individual and societal implications of old-age digital health exclusion. Third, we provide a conceptual framework for old-age digital health exclusion which includes older people, drivers and implications. Finally, we offer some reflections about digital health technologies in health care, highlighting related issues, risks and challenges for ageing societies.

Introduction: eHealth applications have the potential to provide new integrated care services to patients with multimorbidity (MM), also supporting multidisciplinary care. The aim of this paper is to explore how widely eHealth tools have been currently adopted in integrated care programs for (older) people with MM in European countries, including benefits and barriers concerning their adoption, according to some basic health system characteristics.

Materials and Methods: In 2014, in the framework of the ICARE4EU project, expert organizations in 24 European countries identified 101 integrated care programs. Managers of the selected programs completed an online questionnaire on several dimensions, including the use of eHealth. We analyzed data from this questionnaire, in addition to qualitative information from six innovative programs which were studied in depth through case study methodology, according to characteristics of national health systems: a national health model (financing system), overall strength of primary care (PC) (structure/service delivery process), and level of (de)centralization of health system (executive powers in a country).

Results: 85 programs (out of 101) adopted at least one eHealth tool, and 42 of these targeted explicitly older people. In most cases, Electronic Health Records (EHRs) were used and some benefits emerged like improved care management and integration, although inadequate funding mechanisms represented a major barrier. The analysis by health system characteristics showed a greater adoption of eHealth applications in decentralized countries, in countries with a National Health Service (NHS) model, and in countries with a strong/medium level of PC development.

Conclusions: Although in the light of some limitations, findings indicate a relation between implementation of care programs using eHealth tools and basic characteristics of health systems, with decentralization of a health system, NHS model, and strong/medium PC having a key role. However adaptations of European health systems seem necessary, in order to provide a more innovative and integrated care.

Introduction: Long-term care (LTC) is organized in a fragmented manner. Payer agencies (PA) receive LTC funds from the agency collecting funds, and commission services. Yet, distributional equity (DE) across PAs, a precondition to geographical equity of access to LTC, has received limited attention. We conceptualize that LTC systems promote DE when they are designed to set eligibility criteria nationally (vs. locally); and to distribute funds among PAs based on needs-formula (vs. past-budgets or government decisions). Objectives: This cross-country study highlights to what extent different LTC systems are designed to promote DE across PAs, and the parameters used in allocation formulae. Methods: Qualitative data were collected through a questionnaire filled by experts from 17 OECD countries. Results: 11 out of 25 LTC systems analyzed, fully meet DE as we defined. 5 systems which give high autonomy to PAs have designs with low levels of DE; while nine systems partially promote DE. Allocation formulae vary in their complexity as some systems use simple demographic parameters while others apply socio-economic status, disability, and LTC cost variations. Discussion and conclusions: A minority of LTC systems fully meet DE, which is only one of the criteria in allocation of LTC resources. Some systems prefer local priority-setting and governance over DE. Countries that value DE should harmonize the eligibility criteria at the national level and allocate funds according to needs across regions. (C) 2020 The Authors. Published by Elsevier B.V.

Background: Informal carers have a crucial role in the care of older people, but they are at risk of social isolation and psychological exhaustion. Web-based services like apps and websites are increasingly used to support informal carers in addressing some of their needs and tasks, such as health monitoring of their loved ones, information and communication, and stress management. Despite the growing number of available solutions, the lack of knowledge or skills of carers about the solutions often prevent their usage. Objective: This study aimed to review and select apps and websites offering functionalities useful for informal carers of frail adults or older people in 5 European countries (Cyprus, Greece, Italy, Portugal, and Sweden). Methods: A systematic online search was conducted from January 2017 to mid-March 2017 using selected keywords, followed by an assessment based on a set of commonly agreed criteria and standardized tools. Selected resources were rated and classified in terms of scope. Focus groups with informal carers were conducted to validate the list and the classification of resources. The activities were conducted in parallel in the participating countries using common protocols and guidelines, a standardization process, and scheduled group discussions. Results: From a total of 406 eligible resources retrieved, 138 apps and 86 websites met the inclusion criteria. Half of the selected resources (109/224, 48.7%) were disease-specific, and the remaining resources included information and utilities on a variety of themes. Only 38 resources (38/224, 17.0%) were devoted specifically to carers, addressing the management of health disturbances and diseases of the care recipient and focusing primarily on neurodegenerative diseases. Focus groups with the carers showed that almost all participants had no previous knowledge of any resource specifically targeting carers, even if interest was expressed towards carer-focused resources. The main barriers for using the resources were low digital skills of the carers and reliability of health-related apps and websites. Results of the focus groups led to a new taxonomy of the resources, comprising 4 categories: carer's wellbeing, managing health and diseases of the care recipient, useful contacts, and technologies for eldercare. Conclusions: The review process allowed the identification of online resources of good quality. However, these resources are still scarce due to a lack of reliability and usability that prevent users from properly benefiting from most of the resources. The involvement of end users provided added value to the resource classification and highlighted the gap between the potential benefits from using information and communication technologies and the real use of online resources by carers.

Older adults with functional limitations constitute a vulnerable group with usually lower levels of health status and quality of life (QoL). In both Italy and Greece, informal care and privately-hired care workers are common measures for providing them continuous care and support, more than public care services. This situation might increase the risk of worst QoL if older adults are not equipped with own social and economic resources for coping with daily life limitations, especially in a macro-context heavily influenced in recent years by the effects of the economic crisis. The study aimed at identifying the role of socio-economic status (SES) and social participation as predictors of QoL of older adults with functional limitations, after the Great Recession period. We used data on older adults (50+ years) from the Survey on health, ageing and retirement in Europe (Share) wave 6 (2015) for conducting a crosssectional descriptive analysis and running a hierarchical linear regression model for both Italy and Greece, with blocs of predictors concerning demographic, socio-economic, health, access to care, and social participation domains. In both countries, higher levels of SES and social participation were strongly associated with higher QoL, although good health status remained the most influential predictor of better QoL. Our results suggested that multiple social inequalities are likely to occur among most socially disadvantaged older adults and may heavily affect their QoL and social inclusion.