The speaker is health scientist Marijke Kars (62). Marijke currently works as an associate professor at the Utrecht Palliative Care Expertise Center at the UMC Utrecht/Julius Center, where she leads the "Pediatric Palliative Care" research line. She is the coordinator of the Co-IMPACT research project. This project aims to ensure that proactive care planning can be used in practice for children with serious illnesses, regardless of their diagnosis, stage of illness, or sociocultural background. Marijke discusses the importance of proactive care planning for the child, the parents, and the entire family:
A child with an illness and their parents are so much more than just the illness. They are individuals and, together with other children, form a family, a system, with its own way of life. Good pediatric palliative care is care that aligns with the needs, values, goals, and preferences of the entire system of which the child with the illness is a part. This means that caregivers must understand that system and have the skills to encourage both the child and the parents to reflect on and express what the illness means to them. They must look beyond just the illness, the symptoms, and the medical intervention.
Choice for pediatric palliative care
Marijke saw early in her career that being open to the perspective of the child and parents and adapting to it is important for good care. She was in her early twenties, training to be a pediatric nurse, and working in the pediatric ward: “A mother had given birth to a stillborn baby who was brought to our ward while waiting for the funeral director. The parents wanted to see their child, a request that was rare in those days. None of my colleagues dared to bring the baby to the parents, so I decided to do it. It led to a special meeting between parents and their deceased child, and it showed me how important it is to understand the parent's needs in order to be meaningful. They know best what they need at such a sad time. Somehow, I can relate to the care surrounding death, I can deal with it naturally, and I can engage in conversation without fear. This incident, early in my career in pediatric care, determined my choice for pediatric palliative care. Here, first in practice as a pediatric nurse and as head of the pediatric intensive care unit, and later as a health scientist, I was able to apply not only my acquired knowledge and apply skills, but also utilize my personal qualities."
Personal insights and trends in healthcare came together
As a researcher, Marijke specializes in qualitative research, focusing on the experiences of children, parents, and caregivers during illness and the meaning they attribute to these experiences: "My 2012 PhD research, entitled 'Parenthood and Palliative Care in Pediatric Oncology,' and the more than 200 in-depth interviews conducted within the pediatric palliative care research line, have taught me a great deal. For example, I came to understand that both children and parents consider other aspects of life important and meaningful beyond medical treatment. This valuable information doesn't always reach the caregiver, meaning that the 'good conversation' often doesn't take place. Furthermore, I learned that it's difficult for parents and children, but actually for everyone facing a life-threatening illness, to make concrete decisions and document them in advance during the decline. Decision-making is often experienced as something irreversible and evokes feelings of loss. People realize that their thoughts can change as the process progresses. I realized that conversations between caregivers, Discussions with children and parents about future care and treatment should take place sooner, allowing feelings of loss to be kept at bay. In line with this, I learned that conversations during the palliative care process should focus on establishing shared goals, rather than making immediate decisions. This makes the child and parents feel more comfortable, and it offers the opportunity later to evaluate the relevance of medical treatments based on these shared goals.
While my team was working on these insights, the trend toward patient- and family-centered care became increasingly apparent: what's important to the child and parents, what do they want and don't want, and how can we tailor care accordingly? Fine words, but there were no concrete guidelines for their implementation yet. It then became clear to me that we could gain significant benefits by structurally implementing proactive care planning in pediatric palliative care, and that we needed to guide and train parents and caregivers to achieve this; the idea of IMPACT had taken root in my mind. Proactive care planning could become THE tool that could give substance to child- and family-centered pediatric palliative care. Lines of thought converge, you develop a vision, and developments arise, you see opportunities and possibilities, and you step into them. That's how it works in science, at least for me. I'm a bit like water; I flow and seek my way to the areas I believe will lead to progress in healthcare. And in that process, I connect with others.
Theoretically and empirically based approach
She first found this connection with Jurrianne Fahner (38), a pediatrician and fellow in pediatric intensive care, with whom she started IMPACT in 2014: “We worked on developing a proactive care planning approach that is both theoretically and empirically substantiated and can be used with children with different conditions and developmental levels and their parents. IMPACT provides various tools for children, parents, and caregivers to put proactive care planning into practice. In addition, a two-day IMPACT training has been developed for healthcare professionals, facilitated by the Knowledge Center for Pediatric Palliative Care. In recent years, it has been demonstrated that the IMPACT method is effective in openly exploring the perspectives of children and parents, and reflecting on what is important to them, and that this process strengthens the connection between parents and caregivers. Caregivers are taught to support the process from an exploratory and guiding role and to connect their knowledge with the needs and developments on the 'other side of the table,' instead of primarily providing information from the medical perspective.”
Co-IMPACT: improving implementation through further development of IMPACT Tools
"From 2023 onwards, we will be tackling matters even more robustly and, thanks to a ZonMw grant, we have launched a large-scale follow-up project under my coordination, called Co-IMPACT. The four-year research project Co-IMPACT is a collaboration between four consortia (UMCG, Radboud UMC, UMCU (2)) that are jointly advancing the further development and implementation of proactive care planning in pediatrics. We want to deepen IMPACT as a generic instrument with usability in various phases of pediatric (palliative) care and various (chronic) conditions. We also want to take the first step in expanding pediatric palliative care to chronically complex pediatric care and are investigating the possibilities for continuous training for healthcare providers to strengthen the quality of IMPACT in pediatric palliative care practice. Another important component is encouraging collaboration between primary, secondary, and tertiary care, so that everyone within the network around the child and the family acts in accordance with the agreements that have been made. established, with the ultimate goal of achieving optimal care that meets the needs, values, goals and preferences of the child, parents and family."
The instrument that makes child- and family-centered care possible
Currently, in the Netherlands and beyond, there's only one tool in healthcare for implementing child- and family-centered care in pediatric palliative care: IMPACT. Research has resulted in practical tools and training programs that healthcare professionals and parents can use. Translated into English, they're actively used by colleagues abroad! With IMPACT, we contribute both nationally and internationally to the shift in thinking needed for patient- and family-centered care to achieve appropriate care. That's what I call truly making an impact, and I'm incredibly proud of it! Hopefully, many parents and caregivers will discover our approach and, once they start working with our tools and develop the right skills, they'll discover that proactive care planning doesn't have to be so complicated.