Exploring the Factors Influencing Delay In Cleft Surgery among Children With Cleft Deformities In Rwanda: A Qualitative Study.

Background:
Orofacial clefts pose significant challenges including feeding difficulties, respiratory issues, hearing loss, dental problems, and psychological impacts on affected children. Despite the knowledge that timely access to surgical care for children with clefts is essential for the children’s outcomes, there are still cases of children who present late for cleft surgeries. Considering insufficient information about the factors influencing these late presentations, this study aimed to explore the factors influencing delays in cleft surgery among children with cleft deformities in Rwanda, using a four-delay framework: seeking, reaching, receiving, and remaining in care.

Methods:
This phenomenological qualitative study was conducted in Operation Smile’s surgical program hospitals (CHUK, Kibungo, Kibuye, Ruhengeri, Rwinkwavu, Gisenyi, and Bushenge). A total of 29 In-depth interviews were conducted with 15 caregivers of children with cleft deformities and 14 healthcare providers who provide cleft care in Operation Smile’s surgical camps. Purposive sampling was used to recruit study participants, and the sample size was guided by theoretical saturation. Thematic analysis was done inductively using MAXQDA software version 24.

Results:
The analysis generated 19 subthemes and 6 major themes. The themes included: (1) factors influencing timely/delay in seeking care, (2) factors influencing timely/delay in reaching care, (3) factors influencing timely/delay in receiving care, (4) factors influencing timely/delay in remaining in cleft care, (5) Caregivers’ satisfaction toward cleft care received by their children, and (6) emotional, psychological, and family challenges faced by caregivers. The results revealed that lack of awareness about clefts among caregivers, and cultural norms influenced delay in seeking care. Transport factors such as poor road conditions and long-distance travel influenced delays in reaching care. Nutritional deficits attributed to poor weight gain, and frequent illnesses were physiological factors influencing delay in receiving care. Insufficient cleft care workforce including plastic surgeons, pediatric anesthesiologists, nutritionists, mental health specialists, speech therapists, and orthodontists, was a critical factor influencing delay in receiving and remaining in care. Additionally, findings revealed that caregivers of children with cleft deformities experienced emotional, psychosocial, and economic challenges and family conflicts. Despite these challenges, support services such as coverage of medical and transport costs, and provision of nutritional supplements were beneficial for timely care.

Conclusion:
The result of this study sheds light on the factors influencing delay in cleft surgeries in Rwanda and highlights the need for holistic programs that enhance comprehensive care of children with cleft deformities, such as educating parents, training healthcare professionals, increasing public knowledge about cleft deformities, causes, and management. The results highlighted the need for mental and social assistance for these children and their caregivers. Caregivers and healthcare providers offered critical insights about the success and challenges of cleft care in Rwanda, hence it is important to consider these perspectives when developing cleft care programs and national surgical plans.