The CONNECT project: a conversation approach for parents with children in the palliative phase

The CONNECT project, focused on the existential dimension in pediatric palliative care, is coming to an end. The existential dimension is often experienced by healthcare providers as somewhat elusive. In the field of pediatric palliative care, we encounter parents who naturally care for children with rare diseases with a variation in prospects and expected lifespan. The life-threatening or life-shortening illness and the intensive care needs of their child pose major life challenges for parents, which can completely change their life plans. Primary care providers in particular have the opportunity to detect the loneliness of parents who therefore struggle with life questions and search for meaning in their changed existence. Although care for the existential dimension is a core aspect of good palliative care and research shows that parents experience a reassessment of what is meaningful to them as helpful, it appears that in practice care providers pay little attention to this dimension. Not least because of shyness in action, for example about how to broach the subject or which words to use. Within the CONNECT project, with the help of Action Research, a conversation approach has been developed together with experienced parents and primary care providers from practice to provide accessible support in the field of meaning and life questions. The associated conversation training is included in the regular training offering of the Child Palliative Care Knowledge Center as well as the freely downloadable materials that provide support for having a conversation, including the information brochure, the conversation guide, and a set of conversation cards, see also www.kinderpalliatief.nl/zingeving