Background Advance care planning concepts for adults are not directly applicable to the pediatric setting. Aim of the study was to develop a specific pediatric advance care planning (pACP) intervention using a participatory approach.
Methods Bereaved parents and healthcare professionals selected by purposeful sampling participated in two transdisciplinary workshops. In the first workshop, discussion groups identified key elements of pACP. In the second, participants organized the key elements and visualized the pACP process on a timeline. Results were systematized, translated into a modular program, and sent back to participants for validation.
Results The structured intervention organizes pACP elements in a modular design. First steps include 1) Preparation: building up trustful relationships; 2) Opening discussions: framing the process, making participants’ expectations and aims explicit.
The next modules can be arranged in accordance with participants’ priorities: 3) Focusing on the child: quality of life, wishes and hopes; 4) Medical topics: emergency situations and disease-specific crises discussed in hypothetical scenarios; 5) End of life issues: optional.
Final steps 6) Concluding discussions: validation of written documents (e.g. parental advance directives), discussion on their implementation; 7) Implementation: informing all relevant stakeholders.
Timing (initiation, appropriate intervals, actualization), communication, documentation (emergency and care plans, advance directives, discussion protocols), and age-appropriate participation of children and adolescents are transversal aspects pertaining to the whole process.
Conclusion The developed pACP program exhibits a modular design ensuring a structured step-by-step approach as well as a personalized process aimed at meeting the highly individual needs of the child and the family.
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