Background ACP-conversations in pediatrics seem to occur too late and infrequent. Standards to conduct ACP-conversations are lacking. This study describes the development of an evidence-based pediatric ACP-intervention.
Methods The Medical Research Council framework for development and evaluation of complex interventions was used to structure the developmental process. The process included a systematic review, expert review, a survey among pediatricians and qualitative research among parents, adolescents and health care professionals (HCPs). Behavioral theories and theories of coping with bereavement and loss underpinned the intervention.
Results ACP was seen as an ongoing communicative process, where children and their families work together with HCPs to discover, discuss and document values, preferences and goals of care. The intervention supports ACP by 1) educational materials, 2) an ACP conversation guide and 3) a training for HCPs. Educational materials prepare children and parents by clarifying the concept of ACP and providing preparation prompts to discover their values. The guide provides HCPs structures and wording to address the following identified ACP topics: the identity of the child, living with illness, the future, hope, fears and worries, preferences for daily life and goals of care. The training educates HCPs about the concept of ACP and coping with illness and loss and trains specific communication skills. The intervention includes a documentation format.
Conclusion A pediatric ACP-intervention was designed targeted to the following needs: education about the concept of ACP, strategies to conduct ACP conversations and a documentation format. Our ongoing research will evaluate the feasibility of the intervention.
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