Periodic Reporting for period 1 - Frailife (Child Disability and Family Life)
Reporting period: 2023-05-01 to 2025-10-31
Across the world, more than 240 million children live with disabilities, conditions that profoundly impact not only their own lives but also the lives of their family members. Yet, the broader social and demographic consequences of childhood disability on families remain largely invisible in both academic research and policymaking. Existing studies often focus narrowly on specific conditions, rely on small, non-representative samples, and typically overlook the ramifications effects on parents, siblings, grandparents, and extended family life. This lack of population-based, comprehensive, and causal evidence has created a critical gap in understanding the full scope of how child disability shapes life trajectories, well-being, and social integration within families.
FRAILIFE addresses this gap by shifting the conventional research paradigm: instead of viewing disability solely as a characteristic of the child, it treats childhood disability as a factor that can generate vulnerability, or resilience, throughout the family system. Integrating demography, sociology, public health, psychology and disability studies, the project aims to uncover how a child’s disability influences parents’, siblings’, and grandparents’ health, socioeconomic outcomes, and social participation. The project is also expanding its scope to investigate how the disability of a child affects the cognitive and non-cognitive outcomes of classmates, depending on the different school systems and inclusive strategies. FRAILIFE innovatively uses population-based register data, representative surveys, and novel social media analytics to investigate these effects across several countries, in Europe and beyond, capturing both short- and long-term consequences and the moderating role of diverse institutional and cultural contexts.
The project is structured around four key research questions: (1) How does a child’s disability shape the life-course events and trajectories of family members? (2) What are the health consequences, both mental and physical, for these individuals? (3) How are their civic engagement and social participation influenced? (4) To what extent do institutional frameworks and cultural settings across different parts of the world amplify or mitigate these effects?
FRAILIFE’s expected impact is threefold. First, it brings into visibility one of the most vulnerable and understudied family groups, offering robust, generalizable evidence to inform social policy. Second, it contributes to social science theory by adopting a reversed stratification lens, understanding how a child’s status can shape parental and family outcomes, rather than the reverse. Third, the project supports the development of more effective, inclusive, and family-centred care systems by identifying unmet needs and variations in family outcomes across different contexts.
With its interdisciplinary approach, causal ambitions, and comparative scope, FRAILIFE aims to provide novel and crucial knowledge for scholars, practitioners, and policymakers working at the intersection of disability, inequality, and family well-being.
FRAILIFE addresses this gap by shifting the conventional research paradigm: instead of viewing disability solely as a characteristic of the child, it treats childhood disability as a factor that can generate vulnerability, or resilience, throughout the family system. Integrating demography, sociology, public health, psychology and disability studies, the project aims to uncover how a child’s disability influences parents’, siblings’, and grandparents’ health, socioeconomic outcomes, and social participation. The project is also expanding its scope to investigate how the disability of a child affects the cognitive and non-cognitive outcomes of classmates, depending on the different school systems and inclusive strategies. FRAILIFE innovatively uses population-based register data, representative surveys, and novel social media analytics to investigate these effects across several countries, in Europe and beyond, capturing both short- and long-term consequences and the moderating role of diverse institutional and cultural contexts.
The project is structured around four key research questions: (1) How does a child’s disability shape the life-course events and trajectories of family members? (2) What are the health consequences, both mental and physical, for these individuals? (3) How are their civic engagement and social participation influenced? (4) To what extent do institutional frameworks and cultural settings across different parts of the world amplify or mitigate these effects?
FRAILIFE’s expected impact is threefold. First, it brings into visibility one of the most vulnerable and understudied family groups, offering robust, generalizable evidence to inform social policy. Second, it contributes to social science theory by adopting a reversed stratification lens, understanding how a child’s status can shape parental and family outcomes, rather than the reverse. Third, the project supports the development of more effective, inclusive, and family-centred care systems by identifying unmet needs and variations in family outcomes across different contexts.
With its interdisciplinary approach, causal ambitions, and comparative scope, FRAILIFE aims to provide novel and crucial knowledge for scholars, practitioners, and policymakers working at the intersection of disability, inequality, and family well-being.
In this first phase, the project has mainly focused on the following activities:
1. Data access and disability measurements: 1) Investing in accessing register data in Norway, Sweden, Finland and Italy, either through a call for projects (i.e. Italy), or through agreements and collaborations with colleagues in different countries; 2) Exploring and analyzing different national survey data that could be used to reach the project’s goals because of the presence of child disability measurements and a large enough sample size; 3) Building a new framework to identify individuals with a disability using linked individual-level register data (working paper by Bister, Balbo, Neri, Martikainen and Remes presented at several conferences)
2. Child disability and spillover on family members’ health and well-being: 1) Investigating the spillover effects of having a child with disability on parents’ mental and general health outcomes ( Balbo and Bolano, 2024); 2) Examining the co-evolution of mental health issues within the family (Worn et al., 2024); 3) Uncovering the wellbeing of single parents having a child with disability (paper by Burciu and Balbo under review); 4) Studying spillovers of the exposure of sibling’s disability on siblings’ mental health (working paper by Bister, Balbo, Neri, Martikainen and Remes already presented at several conferences)
3. Child disability and spillover on family members’ life-course outcomes: 1) Analyzing parental subsequent fertility after having a child with Down syndrome or cerebral palsy (working paper by Bolano and Balbo already presented at several conferences); 2) Investigating parental child penalty on the labour market when there is a child with disability (working paper by Balbo, Boeri, Di Porto, Serra already presented at some conferences); 3) Uncovering the parental care burden of child disability in terms of extra-time parents having a child with disability need to devote to the care of their child (paper by Bister, Balbo, Bolano now as revise and resubmit to the European Societies journal); 4) Examining how the exposure to the disability of a sibling shape the transition to adulthood of the other siblings, in terms of timing at which they leave the parental home and start a new family (working paper by Bister, Balbo, Neri, Martikainen and Remes presented at several conferences)
4. Child disability and spillover on family members’ civic engagement and social participation: 1) Investigating parental civic engagement and trust (papers by Balbo and Bolano and Guasti and Balbo presented at two conferences); 2) Studying the relationship between child disability and parental religion and political participation (chapter by Balbo, Dominici, Neri forthcoming in “Economics, Religion and Public Policy," World Scientific Publishing.
5. Child disability and spillover on classmates: 1) investigating classmates' cognitive outcomes (paper by Anelli, Balbo, Dominici, Sierra, presented at some conferences; 2) analyzing effects on classmates’ non-cognitive outcomes (paper by Palmaccio and Balbo presented at some conferences)
1. Data access and disability measurements: 1) Investing in accessing register data in Norway, Sweden, Finland and Italy, either through a call for projects (i.e. Italy), or through agreements and collaborations with colleagues in different countries; 2) Exploring and analyzing different national survey data that could be used to reach the project’s goals because of the presence of child disability measurements and a large enough sample size; 3) Building a new framework to identify individuals with a disability using linked individual-level register data (working paper by Bister, Balbo, Neri, Martikainen and Remes presented at several conferences)
2. Child disability and spillover on family members’ health and well-being: 1) Investigating the spillover effects of having a child with disability on parents’ mental and general health outcomes ( Balbo and Bolano, 2024); 2) Examining the co-evolution of mental health issues within the family (Worn et al., 2024); 3) Uncovering the wellbeing of single parents having a child with disability (paper by Burciu and Balbo under review); 4) Studying spillovers of the exposure of sibling’s disability on siblings’ mental health (working paper by Bister, Balbo, Neri, Martikainen and Remes already presented at several conferences)
3. Child disability and spillover on family members’ life-course outcomes: 1) Analyzing parental subsequent fertility after having a child with Down syndrome or cerebral palsy (working paper by Bolano and Balbo already presented at several conferences); 2) Investigating parental child penalty on the labour market when there is a child with disability (working paper by Balbo, Boeri, Di Porto, Serra already presented at some conferences); 3) Uncovering the parental care burden of child disability in terms of extra-time parents having a child with disability need to devote to the care of their child (paper by Bister, Balbo, Bolano now as revise and resubmit to the European Societies journal); 4) Examining how the exposure to the disability of a sibling shape the transition to adulthood of the other siblings, in terms of timing at which they leave the parental home and start a new family (working paper by Bister, Balbo, Neri, Martikainen and Remes presented at several conferences)
4. Child disability and spillover on family members’ civic engagement and social participation: 1) Investigating parental civic engagement and trust (papers by Balbo and Bolano and Guasti and Balbo presented at two conferences); 2) Studying the relationship between child disability and parental religion and political participation (chapter by Balbo, Dominici, Neri forthcoming in “Economics, Religion and Public Policy," World Scientific Publishing.
5. Child disability and spillover on classmates: 1) investigating classmates' cognitive outcomes (paper by Anelli, Balbo, Dominici, Sierra, presented at some conferences; 2) analyzing effects on classmates’ non-cognitive outcomes (paper by Palmaccio and Balbo presented at some conferences)
Thanks to the research activities carried out so far, the project has significantly contributed to raising awareness about the often-overlooked spillover effects that child disability has on other family members. FRAILIFE is helping to highlight how child disability represents a neglected yet powerful source of inequality across families. Over the past two years, I have been invited by practitioners, parent associations, and policymakers to present the project's findings at various events, round tables, and conferences. These engagements mark a crucial first step in promoting a shift in perspective: from focusing solely on the child to adopting a broader, family-centered approach to disability. This growing interest confirms the societal relevance of FRAILIFE’s objectives.