Leader: Marco Albertini (UNIBO); Other collaborator(s): UNIMOL/INRCA/LEGACOOP
An efficient, effective and socially sustainable relation between public, private (i.e. paid) and unpaid informal caregiving represent a key solution to the challenge of meeting the increasing demand for care in ageing society. Policies need to be designed in line with evidence from scientific research – e.g. (i) exploiting mechanisms of reciprocal specialization vs. fearing phenomena of reciprocal crowding out; (ii) factoring in the implicit costs of informal caregiving when its provision leads to care provider’s exit form paid labour market or health deterioration. This task will develop evidence-based, co-designed, socially sustainable policy recommendations addressing multiple levels of institutional decision making. The recommendations package will be developed with the involvement, consultation and active participation of key stakeholders, such as: relevant public institutions at regional and municipal levels; large NGO’s not-for-profit organizations in the sector of care provisions; care providers from the private sector, organizations representing the workers of care provision sector; associations representing care receivers, their families and communities
Brief description of the activities and of the intermediate results:
The general goal improving the design of local, national and regional policies aiming at supporting informal caregivers of older people. SPECIFICALLY:
OUTPUTS- 31/03/2024
During this period, Task 6.3 focused on several key activities:
During this period, Task 6.3 focused on several key activities including:
1. Preparation of the second WP6 deliverable
The second deliverable “POLICY BRIEF: Recommendations on care provision at national and regional level" was prepared. For Task 6.3, a dedicated section titled "Supporting Informal Care of Older People with Long-Term Care Needs: Recent Cross-National Evidence from the European Union" was included. This section emphasizes the increasing reliance on informal care provision, particularly family members, across Europe, as formal long-term care (LTC) services remain often insufficient to meet the growing demand driven by aging populations. The brief highlights key trends in caregiver support policies across the EU, as reported by scholars, including financial assistance, work-care reconciliation policies, respite care services, and access to training and emotional support. A detailed analysis is also provided on Italy’s case, including recent reforms aimed at supporting informal caregivers, such as the restructuring of financial support funds and improvements in care leave policies. The section also identifies persistent challenges for caregivers, as reported in the literature, including regional disparities in support, limited financial recognition, barriers to accessing services, and the lack of comprehensive training programs. Finally, policy recommendations are presented to address these gaps, with a focus on expanding financial support, enhancing respite care services, and improving access to psychological and educational resources, to ensure sustainable LTC systems in the context of demographic change across Europe.
2. Presentation and dissemination of systematic review findings
The final findings of the systematic mixed-methods review on EU policies for informal caregivers were presented on the 16th European Sociological Association (ESA) Conference (Porto, Portugal, 27-30 August 20240). This presentation aimed to share insights with researchers and policymakers in the field, fostering discussions on caregiver support policies, focusing on the European landscape.
Additionally, a poster presentation of the systematic review was also presented at the Gerontological Society of America (GSA) 2024 Annual Meeting in Seattle, USA, providing an opportunity to engage with an international audience, broadening the discussion on caregiver support policies and their implications across different regions.
3. Recruitment and preliminary findings for the qualitative study on care support policies in Italy
Following ethics approval from the University of Bologna, recruitment for the qualitative study exploring care support policies in Italy has now commenced. The study focuses on the experiences of informal caregivers, particularly in relation to the types of support they receive, including financial assistance, care leave, educational resources, and emotional support. Preliminary findings from the study indicate several key challenges faced by caregivers. A major concern reported is the difficulty in accessing formal care services, with some of the caregivers interviewed citing, bureaucratic obstacles, and inconsistent availability of services. Caregivers have also reported high levels of emotional and physical strain due to the insufficient availability of respite care and/or psychological support. Financial support remains a critical issue, with caregivers reporting that they often struggle to balance the economic demands of caregiving with their own financial stability. While some financial assistance is available, it is frequently seen as inadequate, especially for those who provide full-time care. These preliminary findings highlight the need for more accessible and comprehensive caregiver support policies, particularly in terms of formal care services, respite options, and financial aid.
4. Presentation and dissemination of the qualitative study findings
The findings from this qualitative study have been accepted for an oral presentation at the SISEC (Società Italiana di Sociologia Economica) Conference in Pavia, Italy (29 Jan - 1 Feb 2025), providing an opportunity to present insights on caregiving challenges to an Italian academic and policy audience.
Additionally, the study has been accepted for a presentation at the 5th ISA (International Sociological Association) Forum of Sociology (6-11 July 2025) in Rabat, Morocco, where it will contribute to an international discussion on informal care provision and related support policies.
5. Preparation of research proposal for the “Caregiver Biographies” project
The research proposal for the "Caregiver Biographies" project has been finalized. As previously mentioned, this project will center on the life biographies of caregivers, exploring how caregiving evolves over time and profoundly impacts the personal lives of individuals. It aims to capture the complex, long-term experiences of caregivers, looking at key aspects such as emotional, social, and financial challenges, as well as the transformations in their life trajectories. During this period, we have refined the critical concepts that will guide the study and form the framework for data collection. The next steps involve obtaining the ethics approval and preparing recruitment materials and strategies to engage participants, with the aim of gaining an in-depth understanding of the complex role caregivers play and inform the development of more targeted policies that address their specific needs.
6. Development of research proposal using ESS data to examine caregiving outcomes
A research proposal is currently in development, utilizing data from the European Social Survey (ESS) to explore complex relationships between caregiving and caregiver outcomes. The proposal aims to explore how various factors, including personal and sociocultural values, economic status, income feelings, and satisfaction with health services provided by the state, contribute to caregiving intensity. It will further examine how these factors influence caregiver outcomes, with a particular focus on psychosocial outcomes like well-being and depression. By accounting for country-level variations in these factors, the research aims to provide an understanding of how contextual factors shape the intensity of care provision and its psychosocial impacts. The proposal is in its early stages, with ongoing refinement of the research questions and methodology.
7. Development of research proposal for assessing formal support services for informal caregivers across diverse municipalities in Italy
A research proposal has been developed for a project that presents vignettes of a hypothetical caregiving case, focusing on the experiences and needs of a caregiving dyad, across various municipalities in Italy. The project aims to interview municipal representatives, NGOs, and other key stakeholders to assess the availability and scope of formal support services for informal caregivers at the regional and local levels. The project will explore the types of services, including financial assistance, respite care, training, information, psychological support, and other benefits, available in different regions and municipalities across Italy. Interviews have already begun, with the aim of providing valuable insights into the current state of caregiver support and identifying regional variations and gaps in service provision to address the needs of informal caregivers.
OUTPUTS - 30/09/2024
During this period, Task 6.3 advanced its various ongoing activities as following:
1. Dissemination of systematic review findings
A poster presentation of the systematic review findings has been accepted for the Population Association of America (PAA) 2025 Annual Meeting, which will take place in Washington, DC, from April 10-13, 2025. This upcoming presentation will enable further dissemination of the findings and engagement with an interdisciplinary audience to address global caregiver support challenges.
2. Recruitment and preliminary findings for the qualitative study on care support policies in Italy
Following ethics approval from the University of Bologna, recruitment for the qualitative study exploring care support policies in Italy is well underway. The study aims to delve into the unique experiences of informal caregivers, with a particular focus on the types of support they receive, including financial assistance, care leave, educational resources, and emotional support.
To date, eight in-depth qualitative interviews with informal caregivers have been scheduled, with recruitment efforts actively continuing to ensure a diverse sample. These interviews provide rich, nuanced insights into the challenges faced by caregivers in navigating Italy’s care support policies.
3. Preparation of research proposal and pilot study for the “Caregiver Biographies” project
The research proposal for the "Caregiver Biographies" project has been finalized, with significant progress made toward launching this initiative. This month, the proposal will be submitted to the ethics committee for approval, marking a critical milestone in the project's timeline.
Additionally, preparations are underway for a pilot study to evaluate the project’s methodology and assess its feasibility. The pilot will leverage advanced features of the Qualtrics platform, enabling participants to videorecord their responses. This innovative approach aims to create a rich dataset of narratives, providing deeper insights into caregivers' lived experiences. By employing multimedia responses, the study will capture in-depth, detailed accounts of caregivers' journeys, offering valuable data that could enhance our understanding of how caregiving shapes individual lives. The pilot approach also sets the stage for future data collection, ensuring that the study can comprehensively address its objectives.
4. Development of research proposal using ESS data to examine caregiving outcomes
Preliminary analyses of the European Social Survey (ESS) data have begun, focusing on examining a range of variables that may impact caregiving outcomes, including depression and well-being. The research team is currently exploring relationships between caregiving intensity and factors such as personal and sociocultural values, economic status, income perceptions, and satisfaction with state-provided health services. Preliminary statistical analysis is investigating how economic stressors such as income stability and financial burden, affect the well-being of caregivers. Furthermore, initial efforts have been dedicated to assessing the role of caregivers' personal values as well as of perceptions of social support systems and their influence on care intensity and caregiver outcomes such as depression and well-being.
These preliminary findings are expected to inform the development of more refined hypotheses. The next step involves integrating these variables into a comprehensive model to explore the relationships between caregiving intensity, various socio-economic factors across diverse European contexts including Italy, and caregiver outcomes.
5. Case selection for the research project of assessing formal support services for informal caregivers across diverse municipalities in Italy
Case selection for the study on informal caregivers’ access to formal support services across municipalities in Italy has been finalized. The first round of interviews for two regions is about to be completed. These interviews are providing valuable insights into the availability and scope of formal support services for informal caregivers at the regional and local levels, with a focus on understanding the specific needs and challenges faced by caregivers in different municipalities and regions across Italy.
Additionally, a theoretical framework has been proposed to systematize and compare findings from the interviews and municipal website analyses, enabling a more structured approach to understanding the regional differences in caregiver support.
OUTPUTS- 31/12/2024