Exploring parent treatment decision-making in relapsed and refractory neuroblastoma: A qualitative study

Abstract

Parents often become involved in making treatment decisions for their child with cancer when there is no standard treatment protocol, typically seen in poor-prognosis cancers. Advances in scientific medicine has led to more treatment options being available for children resulting in parents making repeated treatment decisions depending on their child's response to treatment. The emotional turmoil of their child's cancer diagnosis can be exacerbated when combined with making decisions that have uncertain outcomes. This study aimed to identify, describe, explore, and explain how parents made repeated treatment decisions and the role of emotion in decision-making when their child had relapsed or refractory neuroblastoma, a poor-prognosis cancer.

Data were collected using qualitative interviews between 2020 and 2022 with parents of children with relapsed or refractory neuroblastoma in the United Kingdom. Data were analysed using Reflexive Thematic Analysis.

Eighteen parents who made between one to six treatment decisions participated. Decision-making incorporated four themes which enabled, influenced, and informed how parents made treatment decisions: 1) time as a structure within decision-making; 2) uncertainty and its relationships with treatment risk, side effects and outcomes; 3) parent oscillation of their cognitive and emotional adjustment; 4) parent responsibility and involvement in decision-making. Time was the central organising concept which structured and organised parent decision-making. We adopted Orlikowski and Yates’s (2002) temporal structures to characterise the experience of time and Stroebe and Schut’s (1999) dual-processing theory to explore the oscillation of parent adjustment of their situation cognitively and emotionally. A conceptual framework showed the interrelationships of these themes.