The Curative, the Palliative… What Does It Matter? The Experience of Parents Who Accompanied Their Child Through Serious Illness and End of Life

The Curative, the Palliative… What Does It Matter? The Experience of Parents Who Accompanied Their Child Through Serious Illness and End of Life

Fortin S; Lessard S; Lajeunesse A

Enfances, Familles, Generations

2023

child; pediatrics; end of life; parent; palliative; care; critical illness; accompaniment; therapeutic relationship

Research Framework: In serious illness, the proliferation of therapeutic possibilities often delays the moment when death is foreseen and when palliative care, too often associated with the end of life and death, is introduced into patients’ care paths. In this context, pediatric palliative care tries to play an active role in the care relationship, beyond the idea of treatments for recovery. Objectives: Our aim is to better understand the moment when palliative care becomes a possibility in the trajectory of serious illness, and how it is represented. We examine how palliative care fits into the parents’ experience, as well as the way in which their experience of serious illness, and more so the relational dimension of the end of life, is expressed. Methodology: We draw on the testimonies of parents whose children suffered major illness and death. Through individual semi-structured interviews between 2017 and 2019, we collected the stories of 16 Montreal children and adolescents (10 boys and 6 girls aged between a few weeks to 19 years) with a genetic or rare disease, cancer or multiple chronic conditions of migrant and non-migrant background. Results: Not only is the type of illness an important figure in the palliative care trajectory, care and the families’ profiles also shape their perception of a (nonetheless) positive experience of their child’s end of life. Conclusions: Curative/palliative therapeutic perspectives have little bearing on our participants’ satisfaction with care at the end of life, as long as a therapeutic trust bond is present between the family and the health care team. Both positively and negatively, this bond of trust influences the pediatric care relationships and major illness trajectories, as well as the end-of-life experiences of loved ones. Contribution: Through the experiences of children at the end of life as shared (mostly) by mothers, this paper discusses both curative and palliative perspectives as chosen by the parents of children facing a poor prognosis. Beyond the different philosophies that inhabit these approaches, the quality (and continuity) of the relationships established with care providers is a determining factor in the quality of the experiences documented through our study. © 2023 Centre - Urbanisation Culture Societe de l'INRS. All rights reserved.

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

February List 2024