Parental Experiences Caring for Their Hospitalized Medically Fragile Infants: A Description of Grief, Stress, and Coping

Background: Advances in care have increased survival and improved outcomes of infants with complex and chronic diseases. These medically fragile infants require long-term hospitalization and depend on technology for survival. Parents of these infants experience stress and difficulties adapting to their parental role. Purpose: To present an account of parental experiences as they provided care for their hospitalized medically fragile infant. Methods: This study was part of a larger constructivist grounded theory study to provide a holistic understanding of the processes of care for medically fragile infants. For this sub-study, 21 parents of hospitalized medically fragile infants were recruited from a pediatric hospital in Western Canada. Parents participated in face-to-face, semi-structured interviews, which were transcribed and analyzed using initial and focused coding. Results: Parents of hospitalized medically fragile infants grieved the loss of parenting a healthy infant, and they experienced multiple stressors. Parents utilized various coping strategies to manage their grief and stressors. Some parents were unable to cope, which exacted a heavy toll on their physical and mental health. Parents recommended psychological support, access to physical activity, primary nursing, and health system navigators. Conclusions: Parental recommendations can inform the design of interventions for parents of hospitalized medically fragile infants.