Author: Anne van Driessche
Date: 25-11-2024
Supervisors:
Prof. dr. Joachim Cohen, Supervisor End-of-Life Care Research Group, VUB
Prof. dr. Kim Beernaert, Supervisor End-of-Life Care Research Group, Ghent University
Prof. dr. Aline De Vleminck, Supervisor End-of-Life Care Research Group, VUB Prof. dr. em. Luc Deliens, Supervisor End-of-Life Care Research Group, Ghent University
Abstract
This dissertation aimed to develop and evaluate a pediatric advance care planning (pACP) intervention for adolescents with cancer and their parents through a multi-center randomized controlled trial (RCT). This aim was addressed by an iterative development approach, whichincorporated several methods, including semi-structured interviews with healthcare professionals, consultations with pACP experts, a scoping review of the existing literature, development of a logic model based on the Theory of Planned Behavior, and testing the materials and components with adolescents with cancer and their parents. These methods resulted in the development of the BOOST pACP (Benefits of Obtaining Ownership Systematically Together in pediatric Advance Care Planning) intervention. Following the development of the intervention, a multi-center parallel-group superiority trial was conducted to evaluate the effects of the BOOST pACP intervention on parent-adolescent communication and behavioral determinants of ACP communication (i.e. attitude, self-efficacy, intention, behavior). Additionally, the dissertation aimed to provide guidance for future interventions by exploring how to tailor approaches to optimize communication and care for children with serious illnesses, which could benefit pACP pACP initiatives, as addressed through a scoping review. To further enhance understanding of the challenges and strategies in conducting RCTs of psychosocial interventions for children with cancer and their parents, a collective case study was performed, consisting of semi-structured expert interviews with principal investigators and research staff members of seven recent or ongoing RCTs.
