Abstract
BACKGROUND: The social stigma of families of children living with colostomies due to anorectal malformation (ARM) is significant in low-income countries (LICs). Improved access to pediatric surgery has resulted in more 1-stage ARM procedures in Southwestern Uganda, avoiding colostomy creation, but the impact on social stigma experienced by families is unknown. We hypothesized that this change would decrease the social stigma experienced by families. METHODS: A single-center mixed retrospective and prospective cohort study with combined qualitative data of families of children with ARM who underwent corrective surgery compared the stigma experienced by those with colostomies to those without. The Kilifi Stigma Scale of Epilepsy (KSSE) was used to assess social stigma. Multivariable regression analysis assessed differences in the stigma experienced, controlling for age at diagnosis, rurality, distance traveled, sex, and parental education. Subgroup analysis assessed the impact of colostomy duration on stigma, stratified over parental education. RESULTS: Patient/family dyads with 238 ARM were included; 177 (74%) received a colostomy. Most patients were male (51%), lived in rural areas (71%), and had parents with primary school education (65%). For those without a colostomy, the median KSSE was 0 (Q1-Q3 0-0), compared to 11 (Q1-Q3 3-20) for colostomy. On multivariable analysis, after controlling for age at diagnosis, rurality, distance traveled, sex, and parental education attainment, families of patients with ARM who received a colostomy had a median KSSE score 7.8 points higher than those who did not receive a colostomy (coefficient 7.78, 95% 3.14-12.43, and p = 0.001). When the duration of colostomy (in years) was examined, the median KSSE score increased by 1.58 points for each additional year for a patient who had a colostomy (IRR 1.58, 95% CI: 0.76-2.40, and p < 0.001). CONCLUSION: Adopting a 1-stage ARM repair for the select types, which avoids colostomy creation, significantly reduces the experience of stigma and ability to live without fear/abuse. Designing cheap reusable colostomy bags in LMIC settings and increasing access to colostomy appliances should be the goal.