Parenting Stress over the First Year of Inflammatory Bowel Disease Diagnosis

Abstract

Abstract Objective A diagnosis of inflammatory bowel disease (IBD) in children can disrupt the family, including altered routines and increased medical responsibilities. This may increase parenting stress; however, little is known about parenting stress changes over the first year following an IBD diagnosis, including what demographic, disease, or psychosocial factors may be associated with parenting stress over time. Methods Fifty-three caregivers of children newly diagnosed with IBD (Mage = 14.17 years; Mdays since diagnosis = 26.15) completed parenting stress (Pediatric Inventory for Parents), child anxiety (Screen for Child Anxiety-Related Disorders), and child health-related quality of life (HRQOL; IMPACT) measures within 1 month of diagnosis and 6-month and 1-year follow-ups. Multilevel longitudinal models assessed change and predictors of parenting stress. Results Parenting stress was significantly associated with greater child anxiety and lower HRQOL at diagnosis (rs = 0.27 to −0.53). Caregivers of color and caregivers of female youth reported higher parenting stress at diagnosis (ts = 2.02–3.01). Significant variability and declines in parenting stress were observed across time (ts = −2.28 and −3.50). In final models, caregiver race/ethnicity and child HRQOL were significantly related to parenting stress over the first year of diagnosis (ts = −2.98 and −5.97). Conclusion Caregivers’ parenting stress decreases across 1 year of diagnosis. However, caregivers of color and those rating their child’s HRQOL as lower may be at risk for greater parenting stress. More research is needed to understand why caregivers of color reported greater parenting stress compared to White caregivers. Results highlight the importance of providing whole-family care when a child is diagnosed with IBD.