chilDfam

Funding body: Fondazione CARIPLO
Grant Holder: Nicoletta Balbo
Project Duration: May 2023 - May 2025

Research team: Nicoletta Balbo (PI), Anna Uboldi, Danilo Bolano, Chiara Serra, Roxana Burciu

Summary

Across the European Union, approximately 4% among individuals under age 16 have a disability, and over 15 million school-age children are known to have special educational needs. Disabilities limit children in their everyday activities and impact families in myriad ways. This project aims to comprehensively analyze the effects of a child disability on family members – parents and siblings – while uncovering their unmet needs, the extent to which they have access to services and healthcare, and the barriers to take-up. Child disability is a dimension of family inequality that has so far been largely neglected by the scientific and public debate even though the magnitude of the phenomenon and even more its spillover effects are far from being negligible. The existing literature on families with a disabled child is scattered, built on small convenience samples, and often focused on a specific disease; the findings are inconclusive and non-generalizable. We cannot understand the social impact of child disability without considering such condition in relation to the context in which it stands. The project embraces the World Health Organization’s definition of disability, considering it as the result of the interaction between medical impairments, ability in activities and social environments. Being the overarching goal of the project very ambitious and the concept of child disability multidimensional, chilDfam adopts a comprehensive approach and a complex study design to address the research problem under study. First, the project uses a multidimensional strategy that investigates several sources (also defined as dimensions) of inequality that can jointly affect families adopting an intersectional approach. The dimensions of inequality considered next to child disability – a source of inequality per se - are: gender of the parents, place of residence (i.e., urban, semi-urban, rural), family structure (e.g., large or single-parent families), socio-economic status, institutionalization of the disease care pathway (e.g., presence of approved integrated care pathways and availability of public exemptions schemes for the disability). Second, chilDfam uses a multi-level approach, focusing on both the Italian national level, and the regional level (Lombardy). The focus on the entire country allows us to adopt a population approach, which compares families with and without a disabled child. Moreover, the Italian context is an extremely interesting test-bed because it is a country with a strong familistic welfare regime, where the family, and in particular the mother, is the main responsible for the care of children or non-independent/sick family members. At the same time, the regional level is appropriate to control for both institutional-political factors (i.e., healthcare and social policies targeting disability) and for factors related to the nature and structure of the organizational population operating in the field of child disability (e.g., presence and role of public, private for profit and private not-for-profit providers). Lombardy is considered a region that displays variation in the dimensions of inequality considered by the study and hence results found in this region would likely be transferred to the national territory. Third, chilDfam uses a multidisciplinary and multimethod research design exploiting insights and tools from demography, sociology, social network studies, healthcare service research and computational social science. The project will make use of high-quality secondary data (register and survey), next to a specific data collection to gather new qualitative data on these families, their needs, their informal support networks, and coping strategies. Moreover, using a novel design that exploits Google Maps Platform APIs and recursive topic detection, chilDfam aims at identifying and mapping service providers for children with disability within the Lombardy region, to uncover geographical inequalities in the level (i.e., healthcare, rehabilitation and socialization) and capillarity of their presence. Beyond the specific insights about the networked consequences of disability, this project will bring families with a disabled child out of their invisibility, offering new and important insights on their functioning, characteristics, and challenges, while informing effective family-centered policies. Moreover, by investigating the impact of child disability on family members’ life course trajectories, health outcomes, wellbeing, and social participation, this project speaks to both general family processes and the special case of Italy’s frailest families. At the same time, by studying the demand (barriers and coping strategies of families) and supply (healthcare, rehabilitation and socialization facilities) side of the child disability services in the Lombardy Region, we can shed new lights on the appropriate healthcare and policy interventions to be implemented to support and include further families with a disabled child.