Purpose: To evaluate the psychosocial functioning of caregivers and patients with anorectal malformation (ARM), Hirschsprung disease (HD), spinal conditions, and idiopathic constipation (IC) during the beginning of participation in bowel management program (BMP).
Methods: In this retrospective study, Parent Stress Scale (PSS, parent-report) and Strengths and Difficulties Questionnaire (SDQ, parent-proxy; SDQ-S, self-report for 11 years and older) were used to evaluate parental stress levels and behavioral functioning, respectively. Descriptive and comparative statistical approaches were applied to summarize the data and to determine differences in scores between diagnoses, gender, and developmental functioning.
Results: Two hundred patients and caregivers participated in BMP during the study period. PSS scores were significantly higher for caregivers of patients with IC than ARM. Statistical differences in SDQ were found for patients with IC versus those with ARM, male versus female patients, and patients with developmental delays versus those without delays. No significant differences were found in SDQ-S scores between these groups.
Conclusion: Key findings suggest that level of parental stress and behavioral concerns were significantly influenced by diagnoses, and partly by gender and presence of developmental delay. Thus, psychosocial support may need to be tailored based on these findings to provide optimum quality of care for patients and families.
Keywords: Anorectal malformation; Bowel management; Hirschsprung disease; Idiopathic constipation; Psychosocial functioning.