Supporting parenting and decision-making for parents of children with medical complexity

Throughout the process of caring for a child in palliative care, all actors are confronted with multiple decisions to which are associated multiple issues. For parents, making decisions for their child and their family's future in a context where uncertainty coexists with hope makes the process complex. To guide them, respite care, as soon as the diagnosis is announced, is essential, along with other forms of psychosocial support. In Belgium, a research team has co-constructed parenting support workshops with professionals and parents. They constitute a form of empowerment for parents at the most complex moments of their lives. In Quebec, complex decision support workshops are offered at the Lighthouse, a pediatric palliative care house in Montreal. Based on the systemic and narrative approach, they offer parents points of reference that stimulate reflection in order to make informed decisions in a context of uncertainty. According to our experience, these devices allow parents to identify and name their own experiences, to take care of themselves, and to feel more in control of the situation, which constitutes a resource for participating in shared decision-making. (c) 2023 Elsevier Masson SAS. All rights reserved.