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A cross-sectional survey on burden of caregivers of pediatric leukemia patients attending a tertiary care hospital in Kolkata, India

Saikat Bhattacharya, Ishita Sarkar, Amal Kumar Sinha Roy, Adwitiya Das.


Background: Care giving of children with leukemia involves considerable stress and anxiety on the part of family caregivers. Although caregivers’ burden is a crucial predictor of the health of both the child and the caregiver, it is often overlooked.

Aim and Objectives: The present study aimed to assess the burden faced by caregivers of pediatric leukemia patients attending a tertiary care hospital in West Bengal, to elicit their sociodemographic characteristics and patients’ profile, and to find out relationship among these, if any.

Materials and Methods: The study was descriptive observational type with cross-sectional design. It was conducted among caregivers of pediatric leukemia patients. Data were collected from 38 caregivers using predesigned, pretested, semi-structured schedule, and patients’ records. Burden was measured using Zarit Burden Interview, which is a 22 item 5-point Likert scale. Data were compiled and analyzed in Microsoft Excel and Statistical Software for the Social Sciences 20.0 for statistical analysis. Sociodemographic and clinical variables were expressed as number, percentages, mean, and standard deviations. To find out the association between different factors and caregiver burden, a logistic regression model was used. P < 0.05 was considered as statistically significant.

Results: Majority of the caregivers were the mothers of the patients (68.42%), and most of the families of caregivers belonged to lower middle class according to modified BG Prasad Scale. Half of the caregivers (50%) experienced moderate–to-severe burden according to Zarit Burden Interview. Association was found between burden experienced and duration of disease and treatment. However, socioeconomic status was found to be the most significant determinant of burden as per multiple logistic regression by ENTER method.

Conclusions: Majority of the caregivers were having moderate to severe and severe burden, which was significantly more among people coming from lower socioeconomic status. Prolonged disease duration and treatment were also found to be associated with increased burden of the caregivers.

Key words: Caregivers’ Burden; Zarit Burden Interview; Logistic Regression; Leukaemia

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