Barriers and Resources to Cleft Lip and Palate Speech Services Globally: A Descriptive Study

BACKGROUND: Although a number of international cleft organizations and cleft professionals in low- and middle-income countries (LMICs) have built and supported comprehensive cleft care and speech therapy models to address the shortage of speech services in LMICs, the specific speech needs of individuals with cleft lip and palate (CLP) in such countries remain unknown. The objective of this study was to evaluate the barriers to accessing speech services for patients with CLP as well as the resources and models of speech services that are currently available for individuals with CLP in LMICs, with the goal of better understanding the needs of this population. METHODS: Qualitative and quantitative methods consisted of Smile Train partner surveys that were distributed June 25th to July 31st, 2018 worldwide. Surveys were distributed through Smile Train's online medical database, Smile Train Express, which every Smile Train partner uses to report their Smile Train sponsored treatment outcomes. A total of 658 Smile Train partners responded to the surveys. Respondents included surgeons, speech therapists, orthodontists, administrators and nurses who represented non-governmental organizations, hospitals (private or public), hospital groups, and private clinics. RESULTS: Results indicated that lack of resources, including access to local speech providers and language materials, as well as financial constraints such as patient travel and speech treatment costs, are the most commonly reported barriers to accessing speech services across all geographic regions surveyed. CONCLUSIONS: Improving access to CLP speech services in LMICs may require strategies that address lack of speech providers, language materials, and financial constraints.