It is important that families and healthcare professionals are closely involved in scientific research so that the care really meets the needs of the child and family and that they can receive the best possible care. In this interview, PhD candidate Chantal Joren explains how this works in practice at the IZP Project.

Chantal first worked as a nurse in adult care. Her passion for palliative care was sparked in the oncology department: "I got to know the beautiful, but also difficult sides of palliative care. It is a special form of care. You are very close to the people." After her master's degree in Health Sciences at the VU University in Amsterdam, Chantal first started working as a Junior Researcher at Nivel, but when she saw the vacancy for a PhD candidate in pediatric palliative care at the IZP Project , she was immediately sold: "Something in said to me: This is it!"

High priority

In the context of the IZP Project, it is being investigated how the Individual Care Plan (IZP) can be improved and used more often. Chantal explains the reason for this:

"In the Knowledge Agenda for Pediatric Palliative Care, it emerged that the implementation and further development of the ICP should be given high priority. In addition, there was also a signal from practice that the ICP is an enrichment for care, but that it is often still too late in the disease process is being drawn up and not yet for all children.At the same time, there were also many new developments in pediatric palliative care that are closely related to the IZP, such as Advance Care Planning and the revision of the Palliative Care Guideline for children. ensured that we started scientific research into the IZP."

Quality and continuity of care

The research project has an important goal: "We hope that we will improve the quality and continuity of care for every child with a life-threatening or life-limiting condition and his or her family, through the further development and implementation of the IZP. It is quite a mouth full!” Chantal remarks with a laugh. "But in short, we hope that the improved ICP will improve the quality of care. Care providers and families will both benefit from this."

Phased approach

The IZP Project started in 2020 and has since gone through various phases to finally be able to launch the definitive IZP in the spring of 2023:

The input collected in the research phases in the interviews and questionnaires is of great value to the researchers. Chantal: "Care providers, parents and children are the ones who have or work with an ICP. They have the experience and know better than anyone what should or should not be changed. That is why it is so valuable that they participate in our research. We can't improve the ICP with their feedback."

Full circle

"What I find special about the IZP-Project is the combination of research and implementation. Often a research ends and only then is it looked at how it can be applied in practice. Now we are doing research, changing the IZP based on the results , test these changes in practice, and then immediately investigate whether the IZP has really improved."

In conversation with scientists

Since this month, parents and caregivers can sign up for the interviews again. But what does such an interview actually look like? Chantal tells what parents and caregivers can expect:

"In principle, the interviews take place digitally, because we do not know very well how the corona virus will behave in the winter. If a parent indicates that they prefer to do the interview at home, we will see what the options are. one-on-one conversations of about an hour. In these interviews we discuss their experiences with the IZP 2.0. These interviews with care providers take place in groups of about six people. As a group, we discuss their experiences with drawing up and working with an IZP 2.0. We do not ask yes/no questions in the interviews, but rather open questions so that there is room for discussion."

Room for experiences and statistics

In addition to participating in interviews, parents and healthcare professionals can also complete a questionnaire about the content and form of the IZP. These two research methods complement each other nicely, according to Chantal. Interviews provide an opportunity to share thoughts, feelings and experiences. This is more difficult in questionnaires, but they are valuable for expressing results in figures and statistics. This is also called a mixed method research, because qualitative and quantitative research methods are combined.

Achieving something beautiful together

Everyone involved in pediatric palliative care is committed to providing the best care for the child and family. Healthcare professionals, parents and researchers often know how to find each other. The IZP Project is exemplary of the importance of good interaction between practice and scientific research: "It is great that practice and research come together in this way. The team consists not only of researchers, but also of the Networks Integral Child Care, Kinder Comfort Teams, the Child and Hospital Foundation, Knowledge Center for Palliative Care for Children, a parent panel… Everyone who actually has to deal with the IZP plays a major role!"

Does your child have an Individual Care Plan 2.0? Or do you work with it as a healthcare provider?

Via www.izpproject.com you can register for the questionnaire and/or interview via the registration form for parents or care providers. You can also go directly to the questionnaire via the link below:

Parent Questionnaire: https://redcap.link/sm1dpalh
Questionnaire for Healthcare Professionals: https://redcap.link/bject134