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Impact of Reducing Time Lived With Colostomies on Social Stigma Affecting Children With Anorectal Malformations in
Felix Oyania1,2, Caroline Q Stephens2, Sarah Ullrich3
1Mbarara University of Science and Technology, Mbarara, Uganda.
Insights
Families of children with anorectal malformation (ARM) who underwent colostomy experienced significantly higher social stigma. Avoiding colostomy through 1-stage ARM repair greatly reduces this stigma, improving quality of life.
Area of Science:
- Pediatric Surgery
- Social Stigma Research
- Global Health
Background:
- Social stigma significantly impacts families of children with anorectal malformation (ARM) requiring colostomy, particularly in low-income countries (LICs).
- Improved pediatric surgical access in Southwestern Uganda has led to more 1-stage ARM procedures, potentially reducing the need for colostomy.
- The impact of this surgical shift on family social stigma remains largely unquantified.
Purpose of the Study:
- To investigate the association between colostomy creation and social stigma experienced by families of children with ARM.
- To compare the levels of social stigma in families with and without a colostomy following ARM corrective surgery.
- To assess the influence of colostomy duration on experienced social stigma.
Main Methods:
- A mixed-methods study combining retrospective and prospective cohorts of 238 patient/family dyads undergoing ARM surgery.
- The Kilifi Stigma Scale of Epilepsy (KSSE) was utilized to quantify social stigma.
- Multivariable regression and subgroup analyses controlled for demographic and clinical factors, including colostomy duration and parental education.
Main Results:
- Families of ARM patients with a colostomy reported significantly higher median KSSE scores (11) compared to those without (0).
- Multivariable analysis revealed that colostomy was independently associated with a 7.8-point increase in KSSE scores (p=0.001).
- Each additional year with a colostomy correlated with a 1.58-point increase in stigma scores (p<0.001).
Conclusions:
- 1-stage ARM repair, when applicable, substantially mitigates social stigma, enabling families to live with less fear and abuse.
- Strategies to reduce stigma should focus on avoiding colostomy creation through advanced surgical techniques.
- In LICs, developing affordable, reusable colostomy bags and improving access to ostomy supplies are crucial goals.
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.
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