The Experiences of Primary Caregivers of Children Receiving Palliative Care: A Qualitative Study

Pediatric palliative care presents a complex landscape for primary caregivers, who play a pivotal role in managing the care and well-being of children with life-limiting or life-threatening conditions. The present study aimed to explore the life experiences of primary caregivers of children receiving pediatric palliative care. This study used semistructured interviews that were audio recorded with 19 family caregivers of children who had received pediatric palliative care in the pediatric intensive care unit. Most of the primary caregivers included in the study were the children's mothers. The results of the study revealed 4 main themes with 13 subthemes: (1) adjusting to a new life; (2) primary caregivers' adaptation to the illness; (3) ongoing challenges; and (4) maintaining social networks. Primary caregivers of the children receiving palliative care have social and financial difficulties that will affect their life cycle, including their daily and social life. Strategies to support caregivers should be developed to create an environment in which the problems of caregivers of children receiving palliative care are refined, and necessary changes should be encouraged through the development of training programs.