Abstract
Objective: This study aims to assess stress, quality of life, and mental health risk experienced by parents of children with short bowel syndrome (SBS) undergoing intestinal rehabilitation compared to a group of parents of children with common gastrointestinal complaints. Method: Eleven parents of racially/ethnically diverse children with SBS (0–5 years old) were recruited from a multidisciplinary intestinal rehabilitation program in the southeastern United States. Participants completed sociodemographic, mental health risk (PHQ-SADS), parental stress (PSI-4 Short Form), and quality of life (QoL; SF-36) questionnaires. Semistructured interviews of SBS parents were conducted, transcribed, coded, and systematically analyzed using principals of thematic analysis. Results: Significant differences with large effect sizes were found on measures of anxiety, parenting stress, and emotional well-being, indicating greater risk for SBS parents. Parent experiences in three themes were identified: navigating treatment challenges (e.g., high risk of complications), parenting role stress (e.g., respite and self-care), and support systems (e.g., peer-based support). Parents reported a lack of awareness and education surrounding intestinal rehabilitation and SBS, resulting in difficulty accessing quality medical treatment, services, and support.
Original language | English (US) |
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Pages (from-to) | 251-262 |
Number of pages | 12 |
Journal | Clinical Practice in Pediatric Psychology |
Volume | 10 |
Issue number | 3 |
DOIs | |
State | Published - 2022 |
Externally published | Yes |
Keywords
- Parent quality of life
- Parenting stress
- Qualitative research
- Short bowel syndrome
ASJC Scopus subject areas
- Pediatrics, Perinatology, and Child Health
- Developmental and Educational Psychology
- Clinical Psychology
- Applied Psychology