Exploring the experiences of parent caregivers of children with chronic medical complexity during pediatric intensive care unit hospitalization: an interpretive descriptive study

BMC Pediatrics
Janet E RennickMargaret Ruddy

Abstract

Children with medical complexity (CMC) account for an increasing proportion of pediatric intensive care unit (PICU) admissions across North America. Their risk of unscheduled PICU admission is threefold compared to healthy children, and they are at higher risk of prolonged length of stay and PICU mortality. As a result of their sophisticated home care needs, parents typically develop significant expertise in managing their children's symptoms and tending to their complex care needs at home. This can present unique challenges in the PICU, where staff may not take parents' advanced expertise into account when caring for CMC. The study aimed to explore the experiences of parents of CMC during PICU admission. This interpretive descriptive study was performed in the PICU of one Canadian, quaternary care pediatric hospital. Semi-structured interviews were conducted with 17 parent caregivers of 14 CMC admitted over a 1-year period. Parents of CMC expected to continue providing expert care during PICU admission, but felt their knowledge and expertise were not always recognized by staff. They emphasized the importance of parent-staff partnerships. Four themes were identified: (1) "We know our child best;" (2) When expertise collides; (3...Continue Reading

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Citations

Sep 24, 2020·Journal of Child Health Care : for Professionals Working with Children in the Hospital and Community·Denise AlexanderMaria Brenner
May 7, 2020·Current Opinion in Pediatrics·Charles B Rothschild, Sabrina F Derrington
Oct 25, 2020·Journal for Specialists in Pediatric Nursing : JSPN·Lori J WilliamsAnne L Ersig
Jan 8, 2021·Italian Journal of Pediatrics·Manuela GalloVassilios Fanos
Apr 5, 2021·Pediatric Critical Care Medicine : a Journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies·Jori F BogetzDanielle D DeCourcey
Sep 29, 2021·Hospital Pediatrics·Kyle A KempMaria J Santana
Feb 6, 2020·Pediatrics·Heather L Tubbs-CooleyJessica Keim-Malpass

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