Development of a Program to Optimize the Experience and the Use of At-Home Oral Chemotherapies in Pediatric Acute Lymphoblastic Leukemia: A Participatory Approach Using the Behavior Change Wheel

BackgroundChildren diagnosed with acute lymphoblastic leukemia (ALL) receive oral chemotherapies (OCs) for 2 years. The at-home self-management of OCs and their consequences on the child lead to multifaceted difficulties that can impact their optimal use and the family's well-being. We report the development process and the detailed plan of a program to support families throughout the treatment.MethodThe development combined a participatory approach with the three stages of Behavior Change Wheel (BCW) framework, namely understanding the behavior to change, identifying intervention options, and identifying content and implementation options. A working group (i.e., researchers, parents, and professionals involved in the care of children with ALL) participated at all development stages through online meetings and co-construction activities.ResultsThe core objective targeted by the program was defined as: <i>to enable families to face the difficulties met with OC by mobilizing tools and resources in collaboration with the healthcare team to support the proper use of OC and the family well-being</i>. The program plan comprises three components with various interventions dispensed at key times during treatment: education and training for OC management and safe use, evaluation and counseling about OC side effects, and empowerment of families and normalization of their experience with OC.DiscussionThe combination of a participatory approach and a structured framework for the program development is likely to increase its relevance, acceptability, and efficacy. This program has the potential to support more effective and safe use of OC, as well as the well-being of the child and their family.