Objective: To report the experiences of parents for cleft lip and palate children throughout their treatment journey. Additionally, to identify the presence or absence or organized healthcare services for the cleft lip and palate patients in terms of parents’ awareness about the condition and its management, as well as the presence of medical referrals between the specialists. Moreover, to highlight the obstacles that could be faced by the patients along the treatment journey.
Design: Cross-sectional survey.
Setting: The Department of Orthodontics, Faculty of Dentistry, Cairo University and Abouelreish Children Hospital, Cairo University, Egypt.
Participants: 125 Parents for Egyptian patients with unilateral or bilateral complete cleft lip and palate, with age > or = 6 years old were included in the study.
Intervention: The parents were asked to fill a questionnairethat was designed to gather information regarding the the mentioned objectives.
Results:92% of the parents reported that they couldn’t afford the treatment procedures that were needed throughout their children’s’ timeline. 95% of the families didn’t know the meaning of a specialized cleft center and 98.4% said that their children haven’t been referred to a cleft center before. 71% of the families reported that they don’t know the interdisciplinary treatment team-based approach for management of cleft lip and palate patients. 47% of the included sample reported that they weren’t guided with medical referrals between the different medical specialists.
Conclusion: The overall parents’ experiences are complex and reflect that cleft care require a lot of improvement in our country to meet the parents’ expectations.
Parents’ knowledge regarding cleft care is considered deficient.
Parents reported the unmet need for an organized medical referral system, clear roadmap of treatment, further financial and social support as well as more awareness about the condition and the phases of treatment.