Examining Caregiving Burden in Mothers of Children With Newly Diagnosed Leukemia: The Role of Information Needs

Abstract

Background

This study aimed to identify the information needs of mothers of children diagnosed with leukemia and to examine the relationship between these needs and the care burden.

Methods

This longitudinal descriptive study, conducted in 2022, involved 110 mothers of children and adolescents aged 6 to 18 with leukemia. Data were collected at two points: upon admission and before discharge. The study utilized a 13-item information needs scale and a 22-item Caregiver Burden Scale (CBS) to gather data. The multivariable linear regression analyses were employed to identify predictors of caregiver burden, including variables that were significant in the bivariate analyses (p values < 0.05) as independent variables in the multivariate model.

Results

In the first week, the mean score for the overall information needs scale was 2.19 ± 0.54, which significantly increased to 2.99 ± 0.34 by the fourth week. The mean score for the overall CBS was 2.97 ± 0.41 (out of 4) in the first week, rising significantly to 3.34 ± 0.34 by the fourth week (p < 0.001). There was a significant inverse correlation between overall information needs and overall CBS both in the first week (r = −0.415, p < 0.01) and in the fourth week (r = −0.224, p < 0.05).

Conclusions

This study highlights the evolving information needs and increasing caregiver burden among mothers of children and adolescents with leukemia during their initial round of chemotherapy. Although increasing information helps alleviate the caregiver burden, the upward trend in perceived caregiver burden from the first suggests the need for additional supportive interventions.