Significant Stress in Parents of Children With Short Bowel Syndrome Undergoing Intestinal Rehabilitation: Considerations for Care

Chelsea P. Wilcocks, Jessica M. Valenzuela, Jacklyn E. Stellway, Shanique Yee, Debora Duro

Research output: Contribution to journalArticlepeer-review

1 Scopus citations

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 languageEnglish (US)
Pages (from-to)251-262
Number of pages12
JournalClinical Practice in Pediatric Psychology
Volume10
Issue number3
DOIs
StatePublished - 2022
Externally publishedYes

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

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