Autor: |
Belza, Christina, Avitzur, Yaron, Ungar, Wendy J., Stremler, Robyn, Fehlings, Darcy, Wales, Paul W. |
Předmět: |
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Zdroj: |
JPEN Journal of Parenteral & Enteral Nutrition; Mar2023, Vol. 47 Issue 3, p342-353, 12p |
Abstrakt: |
Background: Improved survival rates for children with intestinal failure (IF) have resulted in an increased population of children receiving long‐term parenteral nutrition (PN). Our objective was to determine burden on caregivers of children with IF receiving long‐term PN. Methods: We performed a cross‐sectional study of caregivers of children with IF receiving long‐term PN in our intestinal rehabilitation program. A healthy comparison group matched on age of the child was enrolled. All participants completed standardized questionnaires, including the Parental Stress Index – Short Form (PSI‐SF), Hospital Anxiety and Depression Scale (HADS), and PedsQL Family Impact Module (PedsQL FIM). Univariate analysis was completed using a Student t test and chi‐square, with an alpha value of <0.05 considered significant. Results: Thirty‐eight caregivers of children with IF and 29 caregivers of healthy children consented, with response rates of 89% and 96.5%, respectively. Our study demonstrated increased stress for caregivers compared with comparison parents (PSI‐SF total score of 83 [SD = 26.8] vs 62.9 [SD = 13.5]; P < 0.01). Caregivers had increased anxiety (HADS anxiety score of 9.3 [SD = 4.8] vs 6.7 [SD = 3.2]; P = 0.02) and higher depression scores (HADS depression score of 6.3 [SD = 4.3] vs 4.1 [SD = 2.6]; P = 0.02) compared with the comparison group. Caregivers of children with IF demonstrated decreased health‐related quality of life (HRQoL) (reduced PedsQL FIM total score of 50.6 [SD = 18.2] vs 84.1 [SD = 20.5]; P < 0.01). Conclusions: Our results demonstrated significant burden of care in caregivers of children with IF receiving long‐term PN, with elevated stress, anxiety, and depression and decreased HRQoL. [ABSTRACT FROM AUTHOR] |
Databáze: |
Complementary Index |
Externí odkaz: |
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