Caregiver distress: A mixed methods evaluation of the mental health burden of caring for children with bladder exstrophy

• DOI: 10.3389/fped.2022.948490
• Publication Date: 2022-10-14T05:30:57Z
• Authors: Katelyn A. Spencer; Jaishri Ramji; Pooja Unadkat; Iqra Nadeem; Parth A. Lalakia; Jay Shah; Pramod P. Reddy; Douglas A. Canning; Joao Pippi-Salle; Paul Merguerian; Anjana Kundu; Dana A. Weiss; Aseem R. Shukla; Rakesh Joshi; Jennifer R. Frazier
• Keywords: bladder exstrophy-epispadias complex (BEEC); low- and middle-income countries (LMIC); 03 medical and health sciences; 0302 clinical medicine; quality of life; stigma; caregiver distress; 10. No inequality; Pediatrics; RJ1-570; 3. Good health

Introduction Caring for children with bladder exstrophy-epispadias complex (BEEC) exacts a long-term emotional toll on caregivers. Previous studies leave gap in understanding the impact that caring child BEEC has caregivers low- and middle-income countries (LMIC). We hypothesize families experience psychological distress long gone unaddressed. Materials methods From 2018 to 2020, researchers conducted multi-method evaluation of caregiver participants recruited as part annual International Bladder Exstrophy Collaboration based Ahmedabad, Gujarat, India. In 2018, pilot data was collected through cognitive interviews. 2019, structured interviews predicated themes from previous year, which subsequently prompted formal mental health screenings 2020. Caregivers who reported suicidal thoughts were immediately referred intervention. Results described primary source stigma arose their village ( n = 9, 26.5%). also identified concerns 18, 52.9%), including future fertility marital prospects, sources anxiety. substantiated preliminary findings anticipated 31%) experienced 19, 65.5%) again stemming communities. Both cohorts collaboration positive support 23, 36.5%). stated decreased wellbeing number subsequent repairs increased 54, 75%, p 0.002). underwent initial surgery within 5 years screening higher anxiety 46, 63.8%) this exacerbated 0.043). Conclusion Complex, course care, additional surgeries, significantly impacts LMIC setting. Screening congenital anomalies, like BEEC, should be an essential element any comprehensive effort alleviate global burden disease.