Experiences of Parenting a Child Receiving Dexamethasone During Maintenance Chemotherapy for Acute Lymphoblastic Leukemia

Abstract

Background: The purpose of this research was to understand the experience of parenting a child receiving dexamethasone during maintenance chemotherapy for acute lymphoblastic leukemia (ALL). Previous research has shown that dexamethasone's high level of toxicity causes many physical, behavioral, and emotional side effects, which reduce the quality of life during ALL treatment. Less is known about the experience of parenting a child receiving dexamethasone and the impact on the parent–child relationship. Methods: In-depth semi-structured interviews were conducted with 12 parents and data was analyzed using Interpretative Phenomenological Analysis. Results: Four superordinate themes emerged: “a child on steroids is not your child”: the behavioral and emotional changes in the child and their relationships; “you have to do what you have to do”: adapting parenting to manage dexamethasone; “it breaks your heart … it's a horrible medicine”: the emotional impact of parenting a child on dexamethasone; and, “it's the worst week ever”: finding ways to cope with the challenges of dexamethasone. Discussion A preparatory intervention for parents beginning the dexamethasone journey focused on likely challenges, managing boundary setting and discipline, and their own emotional struggles, could be beneficial. Research into the impact on siblings could further understand the systemic influence of dexamethasone and help develop further interventions.