The Lived Experience of Psychological Resilience in Parents of Children with Leukemia: A Qualitative Study

Abstract

Background: Pediatric leukemia poses considerable burdens on caregivers, precipitating psychological distress and financial strain. Caregivers may experience cognitive, emotional, and behavioral shifts. The adverse event, such as the COVID-19 pandemic, may exacerbate their psychological distress. The lived experience of parental psychological resilience in the context of pediatric leukemia caregiving warrants greater scrutiny during the COVID-19 pandemic period. This investigation delves into the lived experience of the psychological resilience dynamics among parents of children with leukemia. Methods: Employing phenomenological methodology, semi-structured interviews were undertaken with parents of pediatric leukemia patients at varying stages of the disease, admitted to a tertiary care pediatric hematology unit in Sichuan Province between March and September 2021. Data analysis was performed using NVivo 11.0 software alongside Colaizzi's phenomenological analysis technique. Results: The study encompassed twenty-four primary caregivers of children with leukemia, including 19 mothers and 5 fathers, with an age span of 28 to 48 years, a mean (SD) of 34.67 (5.39). Analysis revealed five primary themes and seven sub-themes, encompassing: complex emotional trajectories marked by simultaneous negative and positive feelings; the considerable burden of care juxtaposed with inadequate coping mechanisms; a pronounced eagerness for caregiving knowledge contrasted with a deficit in essential training; curtailed social engagement and challenges in resuming normalcy; and a pronounced need for psychological support. Conclusions: The emotional landscape for parents caring for children with leukemia is characterized by a spectrum of lived experiences and emotions, both positive and negative. These emotional shifts are shaped by diverse factors. Positive emotions have the potential to bolster resilience in parents, enabling them to navigate adversity, surmount challenges, and proactively manage the psychological strains and stresses engendered by such crises. Mitigating caregiving demands and augmenting social and psychological support are crucial for enhancing life quality and wellbeing among these parents.