Within the IZP project, research is being done into how the Individual Care Plan (IZP) in child palliative care can be further developed and used more often. In the autumn of 2021, parents and caregivers were asked about their experiences with the IZP by means of interviews and questionnaires. Based on these results, the IZP has been adapted to IZP 2.0 in collaboration with a group of co-readers, consisting of care providers from all care lines and parents. This article explains what exactly has changed.

Content, form and process
It emerged from the interviews and questionnaires that the content, form and process of drawing up and working with the IZP can be improved. There have been no major changes in terms of content. In addition, the participants in the study stated that the division of the IZP is not always logical and that the various topics are better described in separate chapters. Based on this, the division of chapters in the IZP has been changed and a number of new chapters have also been added.

Common values, goals and preferences are central
In IZP 2.0 more attention is paid to Advance Care Planning (ACP) . The old 'Wishes and Needs' chapter is divided into three chapters, including the 'Values, Goals and Preferences' chapter. This chapter provides space to describe the shared goals for care and treatment discussed in ACP conversations with child and parents. The other two chapters are 'Treatment Agreements', in which treatment limitations are described, and 'End of Life', in which there is space to record wishes and agreements regarding the end of life. One parent said the following:

“The piece of end of life seems very short here. These were important parts for us.”

A completely new chapter in IZP 2.0 is 'Palliative sedation'. In this chapter agreements made regarding palliative sedation can be described. One healthcare provider indicated in the study:

“Miss the last phase of life: symptoms with advice including palliative sedation, medication to combat discomfort.”

Drafting and working with the IZP
Many questions arose around the process of drawing up and working with an ICP. It was often unclear who is responsible for the ICP, when it can be completed and for whom the ICP can be of added value. Process agreements have therefore been drawn up in consultation with various care providers and described in the accompanying pocketbook . In the coming months, during the test phase, it will be examined whether the process agreements are helpful in working with the IZP.

What now?
All adjustments made to content, form and process in IZP 2.0 are tested by using the IZP in practice. In the fall of 2022, IZP 2.0 will be evaluated by collecting the experiences of parents and caregivers through interviews and questionnaires. Parents and caregivers can share their experiences with the IZP 2.0 with the researchers. Based on the results, IZP 2.0 will be further developed into the definitive IZP 3.0, which is expected to be used in the spring of 2023.

Do you have any questions about the national research project? about the redevelopment of the Individual Care Plan, the IZP Project? Please contact PhD student Chantal Joren via cyjoren@umcg.nl or view the website of the IZP Project: www.izpproject.com . Do you have questions about the implementation of the Individual Care Plan? Please contact Chantal van der Velden at c.vandervelden@kinderpalliatief.nl .

Read all about the IZP here .