Globally, tuberculosis, noncommunicable diseases (NCDs), and maternal and neonatal disorders are major factors in death and disability (1). Within India, NCDs and neonatal disorders are among the top 10 causes of death, with NCDs accounting for an increasing proportion of overall mortality (63% of all deaths) (2). Despite substantial improvement in health indicators such as maternal mortality, infant mortality, and child vaccination rates (3, 4), the absolute maternal mortality and infant mortality remain high (99 deaths per 100,000 live births and 26 per 1,000 live births, respectively) (5, 6). To effectively manage and reduce this disease burden, there is a need for innovative multi-stakeholder, multi-sectoral interventions at all levels of the health system.

One such strategy is the formal integration of family caregivers into disease management and prevention efforts. A caregiver is someone who supports a patient throughout their illness, recovery, or health event. Caregiver classifications vary by their relationship to the care recipient (spouse, child, neighbor, or professional), by care setting (home-based, community, or institutional), or by the intensity of involvement (primary, secondary, or respite) (7–9). Within India’s socio-cultural milieu, family members—especially women—play an important, albeit informal, role in providing both preventative and curative care (10, 11).

This paper argues that providing skills-based training, tools, financial compensation, and ultimately recognition to caregivers is a low-resource, high-impact way for the Indian health system to improve both short- and long-term health outcomes. Additionally, this paper does not include primary data and instead leverages Indian caregiver models to provide practical recommendations.

Despite their vital and inherent role, caregivers remain invisible within health systems, often unrecognized, unsupported, and uncompensated for the time and care they provide. This lack of support increases their stress and anxiety, as they struggle to manage tasks like managing medications and coordinating with providers while supporting patients in health facilities (12). In 18 countries, representing 50% of the world population, providers only spend an average of 5 min or less with patients—a limited time to be fully prepared to return home (13). This can lead to confusion, leaving families unsure of how to properly care for patients (14). They may miss identifying warning signs or complications that require timely care by qualified health professionals.

In India, accurately estimating the number of caregivers is difficult due to the informal nature of caregiving. One estimate puts it at 273 million people, which is approximately 20% of the population (15). This is expected to grow as the population ages and demand for healthcare increases, highlighting the enormous scale of informal caregiving in the country.

Greater family caregiver engagement can have considerable benefits for stakeholders across the healthcare system (16). Though it comes with unique challenges and barriers, family caregiver engagement can support healthcare worker shortages (16). Greater involvement of new parents in neonatal intensive care units has improved baby health outcomes (17). Many studies have explored the increasing importance of family caregivers across various types of clinical conditions spanning maternal and child health, mental health, and acute care settings, and linkages of their involvement to improved behavior change or health outcomes (18–20). Formal engagement with caregivers is increasingly important given the anticipated shortage of 10 million healthcare workers globally and 1.8 million in India by 2030 (21).

While formally integrating family caregivers into the health system offers many advantages, there are barriers and potential consequences. Determeijer et al. (22) identified seven key obstacles family caregivers face: caregiver burden, discouraging hospital environment, economic strain, ineffective collaboration with health workers, lack of support, sacrifice of personal life to provide care, and inadequate preparation for caregiving (22). Shortages of trained staff, inadequate funding, and lack of training for both caregivers and health workers impede integration efforts (23–27). Economic hardship limits caregivers’ ability to engage in health system activities (25, 28–30). Formalizing family caregivers risks increasing the burden of unpaid or underpaid labor, especially for women. The International Labour Organization’s 5R framework offers guidance to mitigate these risks: recognize, reduce, and redistribute unpaid care; reward paid care; and ensure representation (31). Complementary gender-sensitive measures can also be considered, like social security benefits, employment protections, in-kind services, and market-based incentives (32).

Importantly, such integration must also clearly define appropriate boundaries for caregiver involvement. Any activity that is complex or requires a specialized medical skill set should be done by formal health workers. Overall, coordination with healthcare workers and systems is critical for caregivers to provide a continuum of care. Figure 1 summarizes the caregivers’ critical role.

Formalizing family caregivers’ roles offers a practical way to reinforce several of the World Health Organization (WHO) Health System Building Blocks (33). By recognizing caregivers as part of the health workforce—through structured training and supportive policies—health systems can expand their human resources, address workforce shortages, and create clearer pathways for collaboration with other healthcare providers. Caregiver involvement can help realize self-care, achieve primary care goals, and universal healthcare, and address health requirements from shifting demographic trends.

Despite numerous challenges, a growing number of mission-driven organizations and initiatives are actively working to support caregivers. These models, implemented at different scales, demonstrate how family and community caregivers can be meaningfully integrated into health systems. Although many caregiver integration models exist, the organizations and approaches featured in this paper were selected based on the authors’ prior professional familiarity with them.

Mor and Shukla estimate INR 2000 per capita to deliver UHC commitments, for which 12 states spend more than that, and by 2030 should be possible (46). Ayushman Bharat, State Level Insurance, and National Health Mission are all smaller components of the overall government health expenditure - the most significant components are the resources allocated by state governments from their own budgets. Based on PRS India budget analysis, health allocations are ~6% of annual budgets, not decreasing to pre-COVID-19 levels (see Supplementary Figure A2) (47). This suggests India has enough funds to compensate family caregivers for their critical care within the healthcare system. For example, within India, Kerala has a provision for subsidizing electricity bills for households that have patients dependent on electricity-driven devices like oxygen concentrators and airbeds (48, 49). Additionally, in 2024, Karnataka provides INR 1,000 per month for caregivers of selected illnesses and diseases (50).

Globally, there are different examples of how to finance caregiving-related costs (51). In Canada, it is estimated that replacing formal services with family caregiver contributions represents 5% of its GDP, or a third of its government healthcare expenditure (52). While many long-standing consumer-directed personal assistance programs in the U. S. exclude supporting family caregivers explicitly exclude “legally responsible individuals” (such as parents and spouses) from the policy’s remit, but permit them to hire other certified people who can be paid by the government at twice the minimum wage (53).

In resource-constrained countries like India, where high inequalities create welfare demands that far exceed government capacity, welfare-oriented approaches, like the ones outlined above, are likely to be less compelling (54). The best strategy would be to link it back to health system outcomes and to have the payment to family caregivers come out of the health budgets using what Fast and colleagues describe as a “replacement cost method” in which the value of family care work is the price of time spent on care (52). Several other countries, like the United States and Uruguay, have programs to reimburse caregivers for their time (55–58).

The following key tenets for working with caregivers are proposed:

The vital role that family caregivers play in managing illness and supporting recovery cannot be overstated. With India’s high disease burden, the public healthcare system faces overwhelming challenges. Yet, caregivers—often unrecognized and unsupported—continue to bear the immense responsibility of providing life-saving care, often at great personal cost. This paper has shown that addressing the gaps in caregiver support—whether financial, emotional, or skills-based—is not only crucial for patient wellbeing but also for supporting healthcare workers and the overall health systems sustainability. Low-resource and high-impact models for caregiver engagement already exist and have proven effective. Expansion of these initiatives can ensure caregivers receive the recognition, resources, and compensation they deserve. Additional research to demonstrate the impact of caregiver involvement on health system improvement, caregiver burden, and cost-effectiveness analyses, patient outcomes and long-term implications for health system efficiency can enrich the understanding and value of caregiver involvement. This is a call to action for policymakers, healthcare professionals, and society at large: It is time to invest in caregivers, not just as family members but as equal partners in healthcare. The wellbeing of millions depends on it.