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Barriers and delays in access to cleft surgery among children with cleft deformities in Rwanda: a qualitative study
Esperance Mukanahayo1, Olive Umugwaneza2, Pierrette Ngutete Mukundwa2
1Center for Equity in Global Surgery, University of Global Health Equity, Kigali, Rwanda emukanahayo@gmail.com.
Objectives:
Although timely surgery is essential for improving general health and psychosocial outcomes, delays in cleft surgery remain common in low- and middle-income countries, including Rwanda, where little is known about the underlying causes. This study aimed to explore the factors influencing delays in cleft surgery in Rwanda using the four-delay framework.
Design:
A phenomenological qualitative study was conducted between April and July 2024. We conducted 29 in-depth interviews with 15 caregivers of children with orofacial clefts and 14 healthcare providers involved in cleft care. Transcripts were analysed thematically using an inductive-deductive hybrid approach in MAXQDA (V.24), guided by the four-delay framework while allowing themes to emerge from the data.
Setting:
This qualitative study was conducted across six Operation Smile-supported hospitals in Rwanda. Operation Smile is a non-governmental organisation providing cleft care in several low- and middle-income countries, including Rwanda. Among these facilities, one is a tertiary-level hospital located in Kigali city, while the others are secondary-level hospitals distributed across all provinces of the country.
Participants:
Participants were purposively selected and comprised caregivers of children who underwent cleft surgery at Operation Smile-supported hospitals between 2023 and 2024, as well as healthcare providers with a minimum of 6 months' experience delivering cleft care at these facilities.
Results:
Six major themes and 15 subthemes emerged. Limited caregiver awareness, cultural beliefs and inconsistent knowledge of clefts among healthcare providers influenced delays in seeking care. Reaching care was impeded by long distances, poor road infrastructure and inadequate transportation options. Receiving care was delayed by patient-related factors such as poor nutritional status of children and systemic issues, including shortages of specialised cleft care workforce (such as plastic surgeons, oral and maxillofacial surgeons, anaesthesiologists, etc) and surgical infrastructure. Remaining in care was affected by the absence of multidisciplinary follow-up services. Despite these barriers, caregivers appreciated the support services provided by Operation Smile, including nutrition, transportation and coverage of surgery costs.
Conclusions:
Cleft surgery delays in Rwanda are driven by multifactorial barriers across all stages of care. Strengthening early identification, public awareness, health provider training and post-operative support systems is essential to reducing delays and improving outcomes. Findings support the need for integrated cleft care within national surgical plans and broader health system strengthening efforts, and encourage the social and psychological support to affected children and caregivers.
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