Background Parents of adolescents with a life-limiting illness have expressed the desire to talk to their children about goals and preferences of care. Recently, a family-centered pediatric advance care planning (ACP) intervention (FACE) was developed in the US, which demonstrated feasibility, acceptability and safety. The aim of this project is to develop a pediatric ACP (pACP) intervention by translating the existing FACE intervention and adapting it to the Belgian situation for paediatric patients with cancer and their parents.
Methods First, feedback about the proposed content and process of the FACE intervention will be obtained from pediatricians (n= 4), psychologists (n=4), parents and adolescents with cancer (n=8) from four different pediatric oncology wards through semi-structured interviews. Second, four separate focus groups with the abovementioned groups will be organized. Third, experts with extensive experience in ACP with children will review the materials individually and findings will be discussed in an expert panel. Before pilot testing the intervention, cognitive testing of all questionnaires used for the outcome measurements with adolescents, their parent (n=4) and physicians (n=4) will be done. All retrieved information will be processed in a first version of a manual of how the intervention is delivered.
Discussion After development of the pACP intervention, effectiveness will be tested in a randomized controlled trial design. Primary objective of the trial is to assess whether the pACP intervention improves congruence in treatment preferences between paediatric patients and their parent. A process evaluation will provide more information about the underlying mechanisms of the intervention.
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