IT
Family caregivers facing care burdens, gender inequalities, and the search for protections
Guest editor: Ignazia Bartholini
The themes of the call for papers aim to contribute to the debate on family caregivers, without shifting attention to the subjects of care in light of social policies and services that are still insufficient at the national level.
CONTEXT
TOPICS OF INTEREST
SUBMISSION GUIDELINES
REFERENCE BIBLIOGRAPHY
Context
The latest fact-finding survey on the condition of persons with disabilities conducted by ISTAT (Blangiardo 2021), which examines health status, prevention, lifestyles, and access to healthcare services for the population in question, aligns substantially with previous national and European research. Among these, we recall the Eurostat-EHIS (European Health Interview Survey) 2019 and the ISTAT 2013 Report. According to the most recent available ISTAT data, in Italy, 3.15 million people (5.2% of the population) have a disability—meaning they experience health problems or severe limitations that prevent them from carrying out usual activities (ISTAT 2019, 11). Moreover, over 7 million individuals regularly provide care, at least on a weekly basis, for family members with disabilities.
The ISTAT survey (Blangiardo 2021) confirms that, especially in Mediterranean European countries and particularly in Italy, families are almost always the primary actors responsible for the well-being of relatives with disabilities. This dynamic is attributed to “the ability of families to redistribute resources and risks among their members, thereby acting as a social buffer” (Costa 2022, 188) in the absence of adequate public resources. Given the burden of care needs, Esping-Andersen (2000, 83) defined this model as “familistic,” in which as many welfare responsibilities as possible are assigned to the family, often making it the sole provider of care for individuals with disabilities (Da Roit & Sabatinelli 2005).
The scope of care encompasses a range of practices, from passive supervision (presence, monitoring, and prevention) to direct assistance (either complementing or entirely replacing the care recipient). A range of supports, therefore, that brings together personal assistance, accompaniment and hospitality, domestic tasks, the handling of bureaucratic procedures, and healthcare services.
The care provided to the care recipient—recognised by the International Classification of Functioning, Disability and Health (ICF) as the outcome of an interaction between health-related care and the enhancement of personal and environmental factors for overall well-being—is generally regarded as one of the many tasks assumed by the caregiver. However, the World Health Organization (WHO) emphasises the relational dimension of disability, which does not solely affect the person with the condition but rather results from the complex interaction between an individual’s health status, personal factors, and environmental circumstances. This necessarily impacts caregivers—family caregivers first and foremost—who carry out caregiving activities.
From a legal standpoint, the role of the family caregiver was formally identified for the first time in Law no. 205 of 27 December 2017, which defines the family caregiver as: “The person who assists and cares for their spouse, civil union partner, cohabiting partner (under Law no. 76 of 20 May 2016), a family member, or an in-law who, due to illness, infirmity, or disability (including chronic or degenerative conditions), is not self-sufficient and cannot care for themselves, and is officially recognised as requiring comprehensive and long-term assistance.” This legal framework distinguishes the professional caregiver (case manager) from the family caregiver, and further differentiates the latter from the professional home care assistant (or paid caregiver), who provides assistance under the supervision—direct or indirect—of a family member (Parliamentary Documentation, 2024).
However, the lack of a comprehensive legal definition outlining the conditions and protections required for the recognition of family caregivers has hindered the practical application of the law in the public sphere. Consequently, caregivers often find themselves trapped in the historically gendered division of roles.
There is a mismatch between individual caregiving behaviours—most often performed by female caregivers—and societal expectations: the more caregivers limit their own needs in favour of the disabled person’s well-being, the higher society’s expectations become, without critically assessing the personal costs borne by the caregiver.
The time devoted to caregiving, the nature of the commitment, and the responsibilities assumed by the family caregiver are not only consequences of structural limitations in public services, especially in Southern Italy, but also of direct and indirect financial burdens. In addition to the financial trade-offs made by families caring for a disabled person, every job sacrifice—whether partial or total—by the family caregiver represents an additional indirect cost. Despite financial aid in the form of social security and welfare allowances, the average annual income of families with disabled members is 7.8% lower than the national average. Additionally, Italy’s public spending on health and disability-related services is half the European average in proportion to GDP (Openpolis 2023). Since the 1990s, national spending in this area has declined further relative to OECD countries.
In 2023, Law no. 213 repealed the provision (from Law no. 205/2017) establishing a fund within the Ministry of Labour and Social Policies to support family caregivers. This decision underscores the continued classification of caregivers as unpaid workers, based on a model that recognises paid labour only when performed outside the home and by non-family members. Moreover, it reinforces culturally ingrained gender roles, viewing caregiving as an innate female duty (Esping-Andersen 2000).
Recently, the role of family caregivers has been included in the Non-Self-Sufficiency Fund (FNA), which finances interventions for persons with disabilities. However, this approach risks obscuring the specific needs of caregivers, particularly regarding work-life balance and professional recognition. Many caregivers are forced to quit their jobs, accept career stagnation, transition to part-time work, and ultimately face greater financial and social hardship.
Perhaps it is also in an attempt to modernise outdated representations of roles that, in the first half of 2021, the National Recovery and Resilience Plan (PNRR) launched the National Gender Equality Strategy 2021–2026, in line with the European Gender Equality Strategy 2020–2025. One of the six missions, number 5, entitled ‘Inclusion and Cohesion’, was aimed at strengthening policies in support of female entrepreneurship, with the aim of fostering economic independence and countering gender discrimination. Among other things, it stated: “Through recognising the social value of care work, it is possible to achieve the dual objective of alleviating the care burdens traditionally managed by women within the family sphere and stimulating their greater participation in the labour market. Increasing personal services also means strengthening a sector in which female employment is more prevalent” (PNRR 2021, 203).
In January 2024, a technical working group was thus established to assess the economic recognition of family caregivers. Currently, six legislative proposals have been submitted, each presenting different perspectives on how caregivers should be recognised. Beyond the alignment of the Essential Levels of Social Services (LEPS) nationwide, and proposals that would facilitate work–life balance through access to agile working (smart working) and more flexible or modular working hours, particular importance must be attached to those proposals that view the long–term care provided by family caregivers as remunerable work, regardless of whether they concurrently undertake other employment.
This underscores the opportunity to re–map tailored welfare policies and to provide the conceptual tools for joint advocacy to aid the formulation and implementation of such policies.
The topics proposed for this call for papers are therefore intended to contribute to the debate on family caregivers—not by shifting the focus onto care recipients, but by concentrating on the practices that, within close relationships, ultimately serve to justify the personal sacrifice and the ‘feminine’ gift of care rendered to the most vulnerable, in the context of social policies and services that remain insufficient at the national level.
Topics of Interest
The thematic issue 3/2025 of the Journal intends to host contributions that—based on an analysis of the recent literature on caregivers and in light of the recent declarations and best practices, where available, implemented by the countries of the European Community, and with the awareness that care is a right of the most vulnerable in a democratic society—address key challenges in the field of caregiving.
These contributions should stimulate reflection on how care can be translated into legal content, replacing its current limited interpretation as merely voluntary solidarity with a practice of distributive justice, and on how care can assert itself in terms of social responsibility, entailing compensation for its human costs while upholding equal dignity between genders.
Multidisciplinary and interdisciplinary papers are invited on the following topics:
- The landscape of family caregiving in Italy (demographics, tasks, and caregiving load, family care, and ageing population)
- Regulation of caregiving practices for the care receiver: laws, policies, and legislative limitations for the recognition and support of family caregivers at the national level;
- Representations of care and gender differences; identity and self-sacrifice of the family caregiver;
- Family caregivers as a resource for welfare; adjustment of LEP (Essential Social Performance Levels) and LEA (Essential Levels of Care) in their favour;
- Well-being of the care receiver and well-being of the caregiver; caregiver ‘burden’ syndrome;
- Economic impact of long-term caregiving for relatives on the caregivers providing such assistance;
- Mapping of protective services for caregivers (psychological; emergency and/or respite services…);
- Organization of complementary/alternative care provisions to the family caregiver role;
- Training and certification of family caregiver skills;
- Family caregivers in European welfare systems; policies and best practices in Europe for meeting the needs of both care receivers and family caregivers;
- Support measures for balancing work and caregiving responsibilities; CSR (Corporate Social Responsibility) and company welfare services supporting caregivers.
Submission Guidelines
Within these themes, we encourage the submission of original papers (not submitted to other journals), of length of between 5,000 and 8,000 words for publication in Issue 3/2025. Submissions should be sent to the editorial office of Sinappsi ([email protected]) by 15 June 2025 to be submitted for refereeing (double-blind peer review) following acceptance by the journal’s Scientific/Editorial Committee. Please compile the submission form jointly the article.
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