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The socioeconomic impact of a pediatric ostomy in Uganda: a pilot study
Arlene Muzira1, Nasser Kakembo1, Phyllis Kisa1
1Mulago Hospital, Kampala, Uganda.
Insights
Pediatric ostomies in Uganda significantly impact families, with many caregivers leaving jobs and facing spousal separation. Limited resources and delayed care exacerbate the socioeconomic burden for children with surgical conditions.
Area of Science:
- Pediatric Surgery
- Global Health
- Socioeconomic Impact
Background:
- Pediatric surgical conditions necessitating ostomies are prevalent in low-middle-income countries.
- Delayed presentations and limited surgical capacity lead to prolonged ostomy dependence.
- Significant socioeconomic consequences are observed in children with ostomies and their families in Uganda.
Purpose of the Study:
- To assess the number of pediatric ostomies performed over a three-year period in Uganda.
- To investigate delays in accessing care for conditions like anorectal malformations and Hirschsprung's disease.
- To explore the socioeconomic impact of ostomies on patients and their families through qualitative and quantitative methods.
Main Methods:
- Review of operative logs and patient charts at Uganda's sole pediatric surgery referral center.
- Focus group discussions with family members of children with ostomies.
- Pilot survey administered to caregivers in the outpatient clinic.
Main Results:
- 493 ostomies were placed between 2012-2014 for conditions including anorectal malformations and Hirschsprung's disease.
- Many patients with Hirschsprung's disease and anorectal malformations presented late, often after one year of age.
- Caregivers reported significant impacts, including job loss (93%), spousal separation (47%), and the benefit of peer support.
Conclusions:
- Pediatric surgical disease in sub-Saharan Africa presents substantial challenges with significant disparities compared to high-income nations.
- The socioeconomic complexities surrounding pediatric ostomies require targeted interventions and resource allocation.
- Further research and program development are needed to address the comprehensive needs of this patient population.
Introduction:
Multiple pediatric surgical conditions require ostomies in low-middle-income countries. Delayed presentations increase the numbers of ostomies. Patients may live with an ostomy for a prolonged time due to the high backlog of cases with insufficient surgical capacity. In caring for these patients in Uganda, we frequently witnessed substantial socioeconomic impact of their surgical conditions.
Methods:
The operative log at the only pediatric surgery referral center in Uganda was reviewed to assess the numbers of children receiving ostomies over a 3-year period. Charts for patients with anorectal malformations (ARM) and Hirschsprung's disease (HD) were reviewed to assess delays in accessing care. Focus group discussions (FGD) were held with family members of children with ostomies based on themes from discussions with the surgical and nursing teams. A pilot survey was developed based on these themes and administered to a sample of patients in the outpatient clinic.
Results:
During the period of January 2012-December 2014, there was one specialty-certified pediatric surgeon in the country. There were 493 ostomies placed for ARM (n = 234), HD (N = 114), gangrenous ileocolic intussusception (n = 95) and typhoid-induced intestinal perforation (n = 50). Primary themes covered in the FGD were: stoma care, impact on caregiver income, community integration of the child, impact on family unit, and resources to assist families. Many patients with HD and ARM did not present for colostomy until after 1 year of life. None had access to formal ostomy bags. 15 caregivers completed the survey. 13 (86%) were mothers and 2 (13%) were fathers. Almost half of the caregivers (n = 7, 47%) stated that their spouse had left the family. 14 (93%) caregivers had to leave jobs to care for the stoma. 14 respondents (93%) reported that receiving advice from other caregivers was beneficial.
Conclusion:
The burden of pediatric surgical disease in sub-Saharan Africa is substantial with significant disparities compared to high-income countries. Significant socioeconomic complexity surrounds these conditions. While some solutions are being implemented, we are seeking resources to implement others. This data will inform the design of a more expansive survey of this patient population to better measure the socioeconomic impact of pediatric ostomies and guide more comprehensive advocacy and program development.
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