Caregiver Experience for Children Living with Digestive Tract Congenital Anomalies in Uganda: A Qualitative Study

Caregiver Experience for Children Living with Digestive Tract Congenital Anomalies in Uganda: A Qualitative Study

Nasser Kakembo, Elizabeth Raby, Brian Kasagga , Davis Banturaki, Ann Nabirye, Alice Kajumba, Doruk Ozgediz, Ava Yap
Makerere University School of Medicine, Kampala, Uganda, Kampala, Uganda; The University of California San Francisco, San Francisco, California, USA, United States

Introduction: Surgically correctable digestive tract congenital anomalies (DTCAs) are a significant source of morbidity and mortality for children in LMICs. Additionally, long-term sequelae and delayed treatment of DTCAs contribute to substantial burden on these children and their families. We aimed to understand the alleviating and exacerbating factors affecting the caregiver burden of children with DTCAs in Uganda.
Methods: This qualitative study was conducted in a national referral hospital in Uganda and involved focus group discussions (FGD) with caregivers of children diagnosed with DTCAs. The FGDs were conducted in Luganda and then transcribed and translated into English for thematic analysis by the research team.
Results: Four FGDs included a total of thirty caregivers. Five themes surrounding caregiver burden were identified: 1) Delays in care adversely impacted the quality of life of the caregiver and child, 2) Caregivers suffered “double tax” of the simultaneous heavy childcare costs and inability to finance these costs 3)Community’s appreciation of DTAs was proportional to its support; minimal understanding led to social stigma while faith-based belief led to support, 4) Healthcare workers (HCWs) play a critical role in building caregiver readiness, 5) A community healthcare extension worker (CHEW) program could alleviate caregiver burden.
Conclusions: Our findings reinforce that the burden imposed on caregivers due to financial strain, social stigma, and delays in care is substantial. Factors that alleviate caregiver burden include religious faith, community and spousal support, and positive interactions with HCWs. A CHEW program emerged as a potential solution to facilitate support and preparedness for families of children with DTCAs.

Keywords: congenital anomalies, global surgery, pediatric surgery, low-middle income countries, caregiver burden, quality of life, community health extension worker, community health program