Perceptions of parents of pediatric patients with acute lymphoblastic leukemia on oral chemotherapy administration: A qualitative analysis

Abstract

Objective: To describe the experiences and perspectives of parents of pediatric patients with acute lymphoblastic leukemia (ALL) regarding oral chemotherapy administration during maintenance therapy.Methods: English-speaking parents of patients 4 to <18 years who were receiving ALL maintenance oral chemotherapy were eligible to participate in this mixed methods study. Using semi-structured interviews, we asked participants how difficult they found oral chemotherapy administration. We also probed regarding barriers and facilitators of oral chemotherapy administration and strategies used to overcome challenges. Lastly, we asked participants for their advice to future parents giving oral chemotherapy to their children.Results: Twenty-three participants were interviewed. One-fifth of participants stated that oral chemotherapy administration at home was hard or very hard. Common factors influencing oral chemotherapy administration were product-related (e.g., formulation) and treatment-related adverse effects (e.g., nausea), lifestyle adjustment (e.g., fitting in with family schedule), and attitudes (e.g., onus of medication administration).Strategies to address oral chemotherapy administration included several administration techniques, scheduling of medication administration, and normalization of medication taking.Conclusions: Oral chemotherapy administration during ALL maintenance therapy was hard for some parents. Identification of these parents and discussion of strategies to facilitate adherence to oral chemotherapy regimens may optimize patient outcomes.

Ambiguous Expectations of Parent Caregiving for the Child and Adolescent With Cancer at the Hospital and at Home—An Ethnographic Study

“…Being separated from the family and striving for normalcy are stressful challenges embedded in childhood and adolescent cancer trajectories (Abrams et al, 2019; Björk et al, 2005, 2009; Darcy et al, 2016; Van Schoors et al, 2018; West et al, 2015; Woodgate, 2006). Parents of children with cancer provide a substantial amount of care for their child, including administering oral medications and central venous catheter (CVC) care (Bailie et al, 2021; Tang et al, 2022). Moreover, parents’ caregiving is a prerequisite for discharging their child from hospital during the course of cancer treatment (Clarke et al, 2005; Flury et al, 2011; Molinaro & Fletcher, 2018; Yildirim Sari et al, 2013).…”

Parents’ Experiences with Home-Based Oral Chemotherapy Prescribed to a Child Diagnosed with Acute Lymphoblastic Leukemia: A Qualitative Study

“…This new routine was also described as constraining, and some parents felt burned-out by following a strict routine. Parents fully embracing the responsibility of administrating OC have also been described in other studies [ 20 ]. Our findings highlight, however, that this responsibility is mainly endorsed by one of the parents, either because they were single parents or because they were afraid to delegate this responsibility, or it made it easier to keep track of the drug administration.…”

“…One qualitative study focusing specifically on the lived experience with dexamethasone among children with ALL, assessed at two time points during the home-based therapy, indicates that the psychological effects of this treatment are profoundly disturbing for the child and the entire family [ 18 , 19 ]. A recent mixed-method study focused on parents’ challenges with OC administration, including 6-MP but excluding dexamethasone, during the maintenance phase [ 20 ]. The difficulties reported in administering the OC were related to their formulation and taste, side effects, required lifestyle adjustments, the child’s cooperation, and the parental burden associated with this new responsibility.…”

Prevention of acute and delayed chemotherapy‐induced nausea and vomiting in pediatric cancer patients: A clinical practice guideline

“…Chemotherapy‐induced nausea and vomiting (CINV) are among the most common adverse effects related to cancer therapy and, when poorly controlled, impair patients’ health and quality of life 1–7 . Clinical practice guideline (CPG)‐consistent CINV prophylaxis improves CINV control for both adult and pediatric patients 8–10 …”