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Stress Among Parents of Children With Severe Neurological Impairment in the Pediatric Intensive Care Unit.
- Source :
- Journal of Palliative Medicine; Jul2024, Vol. 27 Issue 7, p869-878, 10p
- Publication Year :
- 2024
-
Abstract
- 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. Objective: 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. Results: 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. Conclusion: Stress among parents of children with SNI related to uncertainty, advocacy, and vulnerability and suggested tensions with "good parent" attributes. Key message: This mixed-methods prospective cohort study suggests that uncertainty, advocacy, and vulnerability are sources of parental stress in the PICU. Most parents reported moderate stress at both PICU admission and discharge. One-third reported that their stress stayed the same or increased, despite their child's improving health. Themes/subthemes related closely to "good parent" attributes. [ABSTRACT FROM AUTHOR]
- Subjects :
- PATIENTS
RESEARCH funding
PARENT-child relationships
LIFE expectancy
HOSPITAL admission & discharge
INTERVIEWING
CHILDREN'S hospitals
DISCHARGE planning
DESCRIPTIVE statistics
UNCERTAINTY
NEUROLOGICAL disorders
PEDIATRICS
LONGITUDINAL method
THEMATIC analysis
SURVEYS
EXPERIENCE
PSYCHOLOGICAL stress
INTENSIVE care units
RESEARCH methodology
FATHERS
PSYCHOLOGY of parents
COMPARATIVE studies
GUARDIAN & ward
LENGTH of stay in hospitals
MINORITIES
DISEASE susceptibility
CONSUMER activism
Subjects
Details
- Language :
- English
- ISSN :
- 10966218
- Volume :
- 27
- Issue :
- 7
- Database :
- Complementary Index
- Journal :
- Journal of Palliative Medicine
- Publication Type :
- Academic Journal
- Accession number :
- 178652360
- Full Text :
- https://doi.org/10.1089/jpm.2023.0683