A task-shifted speech therapy program for cleft palate patients in rural Nepal: Evaluating impact and associated healthcare barriers.

INTRODUCTION: Though access to surgical care for cleft lip/palate has expanded in low- and middle-income countries (LMICs), post-palatoplasty speech therapy is often lacking due to limited healthcare infrastructure and personnel. This mixed-methods study seeks to: 1) evaluate the impact of task-shifted speech therapy on a standardized speech score; 2) describe the experiences of families with post-operative cleft care and associated barriers; and 3) understand how to optimize cleft care by exploring the experiences of children who had nominal improvements after task-shifted speech therapy. METHODS: A convergent parallel mixed-methods study was conducted in Nepal. Standardized speech scores were compared by a blinded speech-language pathologist before and after the speech intervention. Semi-structured interviews (SSIs) and focus groups with families evaluated cleft care experiences and barriers. Qualitative and quantitative data were merged and analyzed. RESULTS: Thirty-nine post-palatoplasty children with speech deficits (ages 3-18) underwent task-shifted speech therapy, and demonstrated significant improvements in composite speech scores targeted by exercises (p<0.0001) and weakness (p=0.0002), with improvements in misarticulation (p=0.07) and glottal stop (p=0.05) that trended towards significance. Forty-seven SSIs demonstrated that the greatest barriers to follow-up were family responsibilities (62%), travel/distance (53%), and work (34%). In five focus groups, families expressed a desire to improve their child's speech and seek formal speech therapy. The speech intervention was found to be beneficial because of the compassionate staff, free lodging/food, and ability to socialize with other cleft patients and families. After merging quantitative and qualitative data, we noted that younger children between 3 and 5 years old and families who traveled greater distances for healthcare access benefited less from the speech therapy intervention. CONCLUSIONS: Task-shifted speech therapy has the potential to improve cleft lip/palate speech in LMICs. Multiple biosocial issues limit access to appropriate post-operative care.

Nepali Linguistic Validation of the Velopharyngeal Insufficiency Effects on Life Outcomes Instrument: VELO-Nepali.

OBJECTIVE: To translate and validate the velopharyngeal insufficiency (VPI) effects on life outcomes (VELO) instrument into Nepali, and test its internal consistency and validity. DESIGN: Quality-of-life instrument translation and validation. SETTING: Community served by Nepal's craniofacial referral hospital. PARTICIPANTS: Twenty-three postpalatoplasty children with VPI, 19 family guardians of VPI cases, and 29 non-VPI controls. INTERVENTIONS: The VELO instrument was translated to Nepali by 2 independent bilingual translators, reconciled, backward-translated, compared, and modified using patient cognitive interviews. All VPI children, guardians, and controls completed the VELO-Nepali. MAIN OUTCOME MEASURE(S): The VELO internal consistency was evaluated using Cronbach α coefficient. Concurrent validity and discriminant validity were assessed using 2-sample t test: assuming unequal variances. RESULTS: The VELO was translated and optimized using cognitive interviews. The VELO-Nepali demonstrated excellent internal consistency, with Cronbach α coefficients of 0.93, 0.94, and 0.90 for VPI cases, guardians of VPI cases, and non-VPI controls, respectively. The VELO-Nepali exhibited strong discriminant validity between VPI cases (x¯ = 45.4, standard deviation [SD] = 22.1) and non-VPI controls (x¯ = 84.9, SD = 12.3), (P < .001). The VELO-Nepali showed strong concurrent validity with similarities in VPI case scores (x¯ = 45.4, SD = 22.1), and guardian scores (x¯ = 52.9, s = 22.8; P = .473). CONCLUSION: The translated VELO-Nepali demonstrates strong internal consistency, discriminant validity, and concurrent validity, and can assess quality of life for Nepali VPI patients. This instrument represents the first VPI quality of life assessment validated in Nepali, and supports the feasibility of its implementation in other low- and low-middle-income countries.