Learning from Evaluation: Redesigning Long-Term Care through Multilevel, Multidimensional and Participatory Approaches

This doctoral research addresses the urgent challenge of evaluating and redesigning Long-Term Care (LTC) systems, a policy field increasingly central to the sustainability, equity, and quality of welfare systems. Demographic ageing, the growing prevalence of chronic and degenerative conditions, and the weakening of family support networks have made LTC a structural priority. At the same time, reforms and strategies at global, European, and national level from the WHO’s call for integrated health and social care, to the European Care Strategy (2022), to Italy’s National Recovery and Resilience Plan (PNRR) and the National Plan for Non-Self-Sufficiency (2023) are reshaping how LTC systems are organised and delivered. These transformations call for robust evaluative tools, capable of assessing whether policies are moving in the intended direction and of translating evidence into actionable knowledge for policy design. A central theme of this work is the idea of policy evaluation for design: evaluation is not conceived as an ex-post accountability exercise, but as an infrastructure of learning, adaptation, and redesign. In this perspective, evaluation becomes a lever to make visible dimensions often neglected in LTC monitoring systems, such as integration across health and social care, the quality of services as perceived by users, and the role of informal caregivers, and to transform them into drivers for institutional and organisational innovation. The thesis is built upon four core research outputs, spanning different levels of analysis. The first study responds to this gap by developing and validating a multidimensional evaluation framework through a two-phase mixed-methods process. In the first phase, key dimensions were identified through an exploration of the literature and systematically mapped to existing Eurostat indicators. In the second phase, a Delphi study with international experts assessed the importance and relevance of these dimensions and indicators. The resulting framework includes six dimensions (Needs, Equity of Access, Interventions and Services, Expenditure, Integration, and Quality) and highlighted persistent gaps, particularly regarding quality of care, informal caregiving, and service integration. The framework provides a useful and replicable tool for comparative monitoring and policy development in the LTC sector. The second study focuses on the family caregiver experience in palliative care pathways, an increasingly recognised but still under-assessed dimension of care. Building on the idea that caregivers are not only co-providers of care but also individuals with their own needs, perspectives, and rights, the study developed and validated a multidimensional framework through a participatory process. Literature and existing measurement tools informed the identification of key dimensions, which were refined through workshops with professionals. A mini-Delphi involving participants, equally split between caregivers and professionals, assessed their relevance and revealed convergences and divergences between groups. The final framework comprises six dimensions (Needs, Responses, Clarity and Adequacy of Information, Availability in Case of Need, Responses in the Home Context, and Communication and Involvement) each consistently rated as important, though valued differently by caregivers and professionals. This study provides both theoretical and practical insights, offering a validated and replicable tool to improve quality of care, coordination, and caregiver well-being in palliative settings. The third study deepens this perspective by exploring how caregivers’ experiences evolve across the palliative pathway. Using two focus groups with bereaved family caregivers, facilitated by psychologists and analysed through thematic and content analysis, the research highlights the dynamic and evolving nature of caregiving pathway. Findings reveal two particularly fragile stages, entry into palliative care, where clarity and adequacy of information are crucial, and the post-death phase, where structured support is often lacking. Results also emphasise the role of healthcare professionals as facilitators of person-centred care, as well as the ambivalences caregivers face when navigating between home care, hospice, and bereavement contexts. The study contributes theoretically by framing caregiving as a co-constructed organisational role, and practically by offering guidance for co-designing pathways that integrate training, information, and emotional support. Finally, a fourth study broadens the focus to the narratives of patients with heart failure, showing the existential value attributed to caregivers and reinforcing the urgency of their institutional recognition and support. Taken together, these studies demonstrate that multidimensional, multilevel, and participatory evaluation architectures can effectively capture the systemic, organisational, and experiential dimensions of LTC. The thesis advances three contributions: i) Conceptual, framing evaluation as part of a cycle of evaluation, learning, redesign, thus reinforcing its transformative potential; ii) Methodological, developing innovative frameworks that combine quantitative and qualitative methods, macro, meso and micro level analyses, and participatory processes; iii) Practical, producing ready-to-use tools to inform monitoring, service design, and policy reform. Overall, this thesis argues that evaluation must be conceived as a political and institutional lever. In the context of ongoing reforms in Italy and Europe, and under the global pressure for more sustainable and integrated care systems, evaluation for design provides the infrastructure needed to monitor change, promote institutional learning, and support the co-production of more equitable, person-centred, and sustainable LTC policies.