Experiences of Caregivers of Critically Ill Pediatric Patients in End-of-Life Stage: A Phenomenological Study

Abstract

Objective: To describe and explain the experiences of family caregivers caring for their critically ill children in their end-of-life stage in a pediatric intensive care unit 

Design: Phenomenological study      

Methodology: The participants, who were purposively sampled, were 11 parents and chief caregivers of critically ill infants and children with life threatening illnesses or in their end-of-life stage treated in a campus hospital. Data were collected one or two times from each participant, through in-depth individual interviews, non-participatory observation, and field note recording. The data were qualitatively analysed using van Manen’s method. Data reliability was established based on Lincoln and Guba’s criteria.     

Results: The experiences of family caregivers caring for their critically ill children in their end-of-life stage were described as belonging to 12 themes classified into van Manen’s four ‘worlds’. First, the ‘lived body’ refers to uncertainty and bittersweet conditions in life, sufferings, stress, heartbreak, and need for strength. Second, the ‘lived time’ is marked by waiting for a miraculous healing, refusing to wish a quick death (in order to fulfill one’s desires), and coming to terms with losses. Third, the ‘lived relations’ refer to moral support from the life partner, assistance from the family, and caregiving from the nurses and physicians. Finally, the ‘lived space’ means flexibility for engaging family members to provide caregiving and help cope with loneliness. 

Recommendations: For nurses and other healthcare professionals caring for critically ill children in their end-of-life stage, this study could provide a better understanding of family caregivers caring for their critically ill children, as well as preliminary information for the development of a caregiving model for this group of pediatric patients in line with the Thai social context.