Stress Among Parents of Children With Severe Neurological Impairment in the Pediatric Intensive Care Unit

Title

Stress Among Parents of Children With Severe Neurological Impairment in the Pediatric Intensive Care Unit

Creator

Bogetz J; Oslin E; Barton KS; Trowbridge A; Yi-Frazier J; Watson RS; Rosenberg AR

Publisher

Journal of Palliative Medicine

Date

2024

Subject

disease severity; neurodisability; parental stress; pediatric intensive care unit; United States; adolescent; adult; article; brain ventricle peritoneum shunt; child; child parent relation; clinical article; cohort analysis; confusion (uncertainty); controlled study; ethnic background; father; feeding tube; female; health survey; home care; hospital admission; hospital discharge; human; implanted vagus nerve stimulator; intrathecal baclofen pump; legal guardian; length of stay; life expectancy; male; mortality risk; noninvasive positive pressure ventilation; palliative therapy; patient advocacy; pediatric hospital; personal experience; prospective study; qualitative research; quantitative study; semi structured interview; tracheostomy; vulnerability

Description

Background: Children with severe neurological impairment (SNI) often receive care in the pediatric intensive care unit (PICU), yet little is known about their parents' experiences. <br/>Objective(s): To examine sources of and changes in stress among parents of children with SNI in the PICU. To compare stressors with ''good parent'' attributes that describe duties parents aim to uphold for their child. Design/Setting/Subjects: Prospective mixed-methods cohort study at a single U.S. children's hospital. Participants included English-speaking parents/legal guardians of a child with SNI with an expected length of stay >1 week and life expectancy >4 weeks. Measurements: Ten-point stress scale administered at PICU admission and discharge with open-ended response items. A subset of parents completed 1:1 semistructured interviews. Data were integrated to examine differences among participants whose stress increased, stayed the same, or decreased, and themes were compared with ''good parent'' attributes. <br/>Result(s): Twenty-five parents/legal guardians completed the surveys; 15 completed the interviews. Children were a median of 7 years old (interquartile range [IQR] 4, 9; range 1-21) and had a median PICU length of stay of 10 days (IQR 7, 15; range 3-62). Twenty percent (n = 5) of parents were fathers, and 36% (n = 9) had a minority racial/ethnic background. Stress was moderate at admission (mean 6.8, standard deviation [SD] -1.7) and discharge (mean 6, SD -2); 32% (n = 8) reported stress trajectories that stayed the same or increased. Major themes included uncertainty, advocacy, and vulnerability and related closely to ''good parent'' attributes. <br/>Conclusion(s): Stress among parents of children with SNI related to uncertainty, advocacy, and vulnerability and suggested tensions with ''good parent'' attributes.<br/>Copyright &#xa9; Mary Ann Liebert, Inc.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

October List 2024

Collection

Citation

Bogetz J; Oslin E; Barton KS; Trowbridge A; Yi-Frazier J; Watson RS; Rosenberg AR, “Stress Among Parents of Children With Severe Neurological Impairment in the Pediatric Intensive Care Unit,” Pediatric Palliative Care Library, accessed February 16, 2025, https://pedpalascnetlibrary.omeka.net/items/show/19747.