421 - An Individual Care Plan in Pediatric Palliative Care: Parents’ and Healthcare Professionals’ experiences
Friday, April 28, 2023
5:15 PM – 7:15 PM ET
Poster Number: 421 Publication Number: 421.147
Chantal Y. Joren, University of Groningen, University Medical Center Groningen, Groningen, Aalsmeer, Noord-Holland, Netherlands; Marijke Kars, University Medical Center Utrecht, Utrecht, Utrecht, Netherlands; Leontien C. M. Kremer, Princess Maxima Center, Utrecht, Utrecht, Netherlands; A.A. Eduard Verhagen, Nniversity Medical Center Groningen, dept of pediatrics, Groningen, Groningen, Netherlands; Judith L.. Aris-Meijer, University Medical Center Groningen, Groningen, Groningen, Netherlands
PhD-student University of Groningen, University Medical Center Groningen, Groningen Aalsmeer, Noord-Holland, Netherlands
Background: In 2015, the national Individual Care Plan (ICP) for pediatric palliative care (PPC) was developed to transform general guideline recommendations into an individualized plan for child and family. By doing so, the ICP facilitates coordination, quality and continuity of PPC. Although the ICP was designed to promote early introduction of palliative care in all domains e.g. physical, psychological, social and spiritual, in practice an ICP is mostly drawn up late in the course of illness and not for all children. Objective: We aimed to gain insight into the experience of parents and healthcare professionals (HCPs) towards the use of the ICP in PPC as a first step towards an optimized ICP. Design/Methods: This mixed-method study used qualitative interviews and quantitative questionnaires with 27 parents of children for whom an ICP was drawn up and 161 HCPs who worked with the ICP. The interviews focused on the ICP process and the questionnaires on the content and lay-out of the ICP. For the qualitative analysis, open and axial coding and constant comparison were used. The quantitative data were descriptively analyzed using mean, ±SD, median and interquartile range. Results: Parents and HCPs use an ICP to share information with all those involved in different lines of care and as a step-by-step plan. Furthermore, HCPs use the ICP to tailor care to the needs of child and family. Having an ICP gives parents peace of mind and helps them with decision-making. Parents (56%) and HCPs (84%) expressed that without an ICP PPC would not be as good. Parents and HCPs label the ICP as complete, but at the same time mention points for improvement e.g., adding a chapter on palliative sedation. The current lay-out of the ICP, a Word document, is seen as not user-friendly by parents and HCPs. A digital ICP in a secure digital environment would improve the ICP according to parents (81%) and HCPs (90%). The ICP is mostly drawn up in the terminal phase, while parents expressed earlier needs to discuss palliative care. To initiate an ICP, keep it up-to-date and share the ICP, it is important that responsibilities are clearly assigned. However, HCPs often do not know who is responsible.
Conclusion(s): The ICP is embraced by parents and HCPs. The ICP in PPC reduces fragmentation of care, facilitates collaboration between different lines of care and coordination of care. Adjustments can be made in the content and lay-out of the ICP to ensure use in practice. Furthermore, agreements on process and responsibilities should be made to support HCPs in working with the ICP.
