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The socioeconomic impact of a pediatric ostomy in Uganda: a pilot study

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Abstract

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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Author information

Authors and Affiliations

  1. Mulago Hospital, Kampala, Uganda

    Arlene Muzira, Nasser Kakembo, Phyllis Kisa & John Sekabira

  2. Northwestern University, Chicago, IL, USA

    Monica Langer

  3. Anne & Robert H Lurie Children’s Hospital of Chicago, Chicago, IL, USA

    Monica Langer

  4. Yale University, New Haven, CT, USA

    Doruk Ozgediz

  5. Department of Surgery, Duke University, Box 3815, DUMC, Durham, NC, USA

    Tamara N. Fitzgerald

Authors
  1. Arlene Muzira
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  2. Nasser Kakembo
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  3. Phyllis Kisa
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  4. Monica Langer
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  5. John Sekabira
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  6. Doruk Ozgediz
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  7. Tamara N. Fitzgerald
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Corresponding author

Correspondence to Tamara N. Fitzgerald.

Ethics declarations

Conflict of interest

The authors declare that they have no conflict of interest.

Research involving animals

This article does not contain any studies with animals performed by any of the authors.

Informed consent

Informed consent was obtained from all individual participants included in the study. The study was approved by the Institutional Review Board at Mulago Hospital in Kampala, Uganda.

Additional information

Arlene Muzira and Nasser Kakembo joint first authors.

Doruk Ozgediz and Tamara N. Fitzgerald joint last authors.

Appendix

Appendix

Survey questions.

Demographic information

Age of child.

Gender.

Home district.

Tribe.

Surgical diagnosis.

Previous surgery performed.

Parental education/understanding of condition

Do you understand why your child needed the stoma?

What information about ostomy care have you received?

From whom have you received ostomy care teaching (nurse, doctor, other family member)?

Is your child attending school?

Social inclusion

How did the ostomy affect your social life?

Do you spend more or less time with friends?

Did the ostomy affect if you are invited to social gatherings?

How did the ostomy affect your role in your community?

Did the ostomy affect your attendance at church / mosque?

Preservation of the family unit

Who is the primary caregiver?

Is the father present in the child’s life?

If the father has been absent, why?

Is the mother present in the child’s life?

If the mother has been absent, why?

How did the ostomy placement affect your relationship with your spouse/significant other?

Financial expenditure

Have you had difficulties finding a nanny for the child? Explain.

From where did you travel to reach the hospital?

How much money did you pay for transportation?

How much money did you spend on food, traveling and while your child was in the hospital?

What is the annual income for your family?

How did you get the money to pay for the trip (loans, selling assets)?

Did you borrow money to pay for the trip? How much? From whom?

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Muzira, A., Kakembo, N., Kisa, P. et al. The socioeconomic impact of a pediatric ostomy in Uganda: a pilot study. Pediatr Surg Int 34, 457–466 (2018). https://doi.org/10.1007/s00383-018-4230-8

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  • DOI: https://doi.org/10.1007/s00383-018-4230-8

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