Parents’ Narratives in Pediatric Palliative Care: A Social Work Perspective pp. 181-190
Authors: (Jean-Pierre Plouffe, Social Worker, CHU Ste-Justine, Montreal, QC, Canada)
Abstract: Being a parent is generally a transformative and joyful experience. A child‘s health problem, however, can overshadow joy with sadness. Parental caring is confronted with the impossibility of helping the child to heal more quickly, which often gives rise to a feeling of powerlessness. This reality is worsened when there is no hope of recovery, or when curative care gives way to palliative care, if only temporarily. In these circumstances, the feeling of powerlessness can increase. Through personal experience, parents weave a story about the child‘s health problem and a story about how the family is coping. The stories are replete with characters, ups and downs, as well as allies and antagonists. Using a narrative approach, this chapter will analyze and comment on the experience of the parents of a child suffering from DiGeorge syndrome who underment a tracheostomy and a gastrostomy. The author will present how parents construct their stories in the context of pediatric palliative care and the impact this narrative creativity has on the family. Furthermore, the author will propose a few strategies that can support parents on their narrative path and help them adapt to the situation.