Stress Among Parents of Children With Severe Neurological Impairment in the Pediatric Intensive Care Unit.
J Palliat Med
; 27(7): 869-878, 2024 Jul.
Article
in En
| MEDLINE
| ID: mdl-38546796
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 11 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 words
Full text:
1
Collection:
01-internacional
Database:
MEDLINE
Main subject:
Parents
/
Stress, Psychological
/
Intensive Care Units, Pediatric
/
Nervous System Diseases
Limits:
Adolescent
/
Adult
/
Child
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Child, preschool
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Female
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Humans
/
Infant
/
Male
Country/Region as subject:
America do norte
Language:
En
Journal:
J Palliat Med
Journal subject:
SERVICOS DE SAUDE
Year:
2024
Type:
Article
Affiliation country:
United States