Identifying Key Elements of Pediatric Advance Care Planning (pACP) with the Help of Bereaved Parents and Experienced Care Professionals

Background: Research has shown that advance care planning concepts for adults are not directly applicable to the pediatric setting. A specific pediatric advance care planning intervention (pACP) is still missing.Aim: To develop a pACP intervention for children with life-limiting diseases.Methods: We selected bereaved parents and (health) care professionals (HCPs) by purposeful sampling and invited them to participate in a one-day transdisciplinary workshop (participatory approach). We assigned participants to one of 3 focus groups (parents, pACP-facilitation, pACP-implementation) to discuss the different perspectives and identify needs, barriers and helpful aspects of pACP. Data were analyzed by content analysis. Results: The main topics identified were 1) Timing, 2) Communication, 3) Decision making, 4) Documentation, and 5) Implementation.Some participants had difficulties to identify pACP as an explicit process separate from palliative care as a whole. Timing subtopics included parentsu2019 readiness, and wrong or missed time points. Decision-making was not restricted to the pACP conversations. Parents needed to discuss their decisions as a couple and with their significant others. They requested that pACP discussions be open and non-judgmental. Parents did not want to be urged to decide. They needed to address their fears and to focus on their childu2019s personality and quality of life. Both parents and HCPs wanted to prepare for crises. HCPs emphasized the documentation of parentsu2019 preferences of care and emergency plans. All participants perceived pACP as an iterative process that allows decisions to be adapted to the childu2019s changing condition. Coping with emotional distress and dissent between professionals and parents were perceived as challenging.Discussion: The analysis of the three focus groups allowed the identification of key elements for a specific pACP intervention. These elements will form the basis for the participative development of a specific pACP framework.