PhD-student University Medical Center Groningen Aalsmeer, Noord-Holland, Netherlands
Background: Pediatric palliative care (PPC) brings many challenges for healthcare professionals (HCPs), such as coordination, continuity and quality of care. Individual Care Plans (ICPs) have shown promising results in aiding these challenges. The Dutch ICP for PPC was developed to facilitate translation of the guideline PPC for children into a personalized plan and to thereby improve coordination, continuity and quality of care. However, in practice, the ICP is not used for all children and often used late in the course of illness, while challenges exist early on. To date, it is unclear with what purpose HCPs in PPC use an ICP in daily practice. This is of relevance to improve the implementation of existing ICPs and aid the development of new ICPs. Objective: To gain insight into the purpose of an ICP in PPC according to HCPs. Design/Methods: Exploratory qualitative research using two semi-structured focus group interviews with 15 HCPs with PPC experience. HCPs from different disciplines were included. Thematic analysis was used to analyze the data. Results: The main purpose of an ICP according to participants is to support interdisciplinary collaboration aimed at delivering appropriate and good quality care aligned to the individual child and family’s need. An ICP is also seen as a tool to aid proactive care and decision-making, and as a tool to provide guidance for HCPs with less experience in PPC. All participants agreed that an ICP could be used for all children of whom the disease trajectory is uncertain. This not only includes children with life-limiting or life-threatening conditions, but also children with complex chronic conditions. Participants believe the information written down in an ICP should primarily be based on the values, goals and preferences of the child and/or parents and be complemented by the expertise of involved HCPs. Participants emphasized that, if possible, children should always be included in drawing up an ICP. The information in an ICP needs to be written down as concrete and clear as possible, and be accessible by the child, parents and HCPs involved.
Conclusion(s): According to HCPs, a completed ICP should contain all the necessary information to collaborate as a team. Furthermore, an ICP should support them in providing optimal child- and family-centered care. An ICP should also support HCPs in proactive care planning and decision-making.
