THE INVISIBLE PATIENTS: UNSEEN BURDEN OF INFORMAL CAREGIVERS OF HEMODIALYSIS PATIENTS IN SOUTHERN INDIA

End-stage kidney disease (ESKD) leading on to requirement of dialysis , demands lifelong treatment and continuous support that extends far beyond the dialysis unit. In India, where professional home-care services are limited and family structures play a central role, the daily responsibility of care inevitably falls upon informal caregivers , usually spouses or close relatives . They  shoulder a complex mix of physical, emotional, financial, and social duties without formal recognition or remuneration. 

Caregivers are often described as the “hidden patients” of the health-care system. While the biomedical focus of nephrology has long centered on the patient’s survival, the psychosocial health of the caregiver remains under-recognized. The burden they carry , manifested as fatigue, stress, and economic strain , has been shown to affect both the caregiver’s well-being and, indirectly, patient outcomes such as adherence to treatment and dialysis continuity. Data from high-income countries have consistently highlighted caregiver distress, yet evidence from India remains sparse, particularly from semi-urban and rural coastal regions where access to multidisciplinary support is limited. 

Understanding the magnitude and determinants of caregiver burden in this context is crucial for designing culturally sensitive interventions that can sustain both patient and caregiver well-being.The present study aimed to quantify the burden experienced by informal caregivers of hemodialysis patients and to identify key demographic and clinical factors associated with this burden.

Study design and setting

A cross-sectional observational study was conducted between January and June 2024 in four private hospitals with established dialysis units in the Udupi district of coastal Karnataka, India. The region represents a mixed rural–urban catchment area where most families depend on out-of-pocket payments for long-term dialysis care.

Participants

A total of 186 informal caregivers of adult hemodialysis patients were recruited through purposive sampling. Eligible participants were family members aged ≥ 18 years who had been providing unpaid assistance with daily activities and treatment-related support for patients undergoing in-center hemodialysis for at least 3 months. Caregivers with known psychiatric illness or on psychotropic medication were excluded.

Data collection tools

Data were collected through structured, interviewer-administered questionnaires in English or Kannada. Socio-demographic and clinical profiles of caregivers and their corresponding patients were recorded. Socioeconomic status was assessed using the 2023 updated Modified Kuppuswamy Scale, incorporating education, occupation, and monthly family income. Caregiver burden was measured using the Zarit Burden Interview (ZBI), 22-item Likert scale (0 = never to 4 = nearly always); total scores were classified as:

0–20 = no/mild burden

21–40 = mild–moderate burden

41–60 = moderate–severe burden

>61  = severe burden

Sociodemographic profile of caregivers

Of 186 caregivers, 65.1 % were female and 78.5 % married. The majority were middle-aged (41–60 years: 53.8 %), and spouses constituted 55.4 % of caregivers. Half were unemployed; among them, nearly one-fourth had quit their jobs to assume caregiving responsibilities. Two-thirds belonged to the lower socioeconomic strata. Most (73 %) resided in rural areas.

Clinical profile of patients

Patients were predominantly male (61.8 %), middle-aged (mean - 55 years), and had been on dialysis for less than one year in 53 % of cases. Almost 90 % had at least one additional comorbidity (hypertension or diabetes), and only 43 % were totally independent in daily activities, with the rest requiring some or complete assistance. 

Distribution of caregiver burden

Overall, caregivers reported substantial psychosocial load: 27.4 % experienced no to mild burden, 61.3 % reported mild to moderate burden, and 11.3 % reported moderate to severe burden. No participant scored in the “severe burden” category. 

Determinants of caregiver burden

Bivariate and multivariable analyses indicated that several demographic and clinical variables influenced burden intensity:

• Marital status – Married caregivers exhibited significantly higher odds of mild-to-moderate burden than unmarried caregivers (p < 0.01).

• Relationship to patient – Spouses and parents reported greater perceived responsibility and emotional strain than children or other relatives (p = 0.01).

• Patient functional status – Dependence in activities of daily living strongly predicted higher burden levels (p = 0.02).

• Treatment cost – Monthly expenditure exceeding ₹20,000(US$ 227)  was linked to moderate burden (p <0.01).

Employment status, duration of dialysis, and comorbidity count were not independent predictors after adjustment.

This  study from southern India demonstrates that over 70% of informal caregivers of hemodialysis patients experience a significant, often unrecognized burden . Patient functional dependence, spousal caregivers and dialysis costs are key predictors of increased burden. These findings highlight the critical role of caregivers as "invisible patients" in India’s resource-constrained, family-centric healthcare system, where rural settings and out-of-pocket expenses amplify vulnerability. Further studies on targeted interventions—such as financial subsidies, respite care for spouses, and community support—are needed to help enhance caregiver well-being and supporting patient adherence to dialysis.