Facilitators and Barriers to Accessing and Continuing Speech Therapy for Children With Cleft Palate: A Qualitative Study.

چکیده اصلی

BACKGROUND: Orofacial clefts are among the most common congenital anomalies worldwide, affecting approximately 1 in 700 live births. Despite surgical repair, most children require long-term speech therapy; parental perspectives on accessing and continuing this therapy remain poorly documented in Low resource contexts. OBJECTIVE: To explore the facilitators and barriers influencing access to and continuation of speech therapy for children with CP within the low resource context. METHODS: A qualitative descriptive design was employed. Semi-structured interviews were conducted with 32 caregivers (15 mothers, 17 fathers) of children with non-syndromic cleft palate (all post-palate repair) at a tertiary cleft care centre, (November 2023-July 2025). Purposive sampling ensured variation in child age, urban/rural residence, and therapy status. Sixteen interviews were conducted in-person (mean duration 20 min) and 16 by telephone (mean duration 18 min) by a single Speech-Language Pathologist interviewer. All interviews were conducted in Hindi. Data were analysed using Braun and Clarke's (2006) six-phase reflexive thematic analysis by two independent coders. Member-checking was conducted with six purposively selected participants to validate findings. RESULTS: Four themes were identified: (1) Information deficit as a barrier-28/32 (87.5%) caregivers reported inadequate guidance at diagnosis or post-surgery (mean importance 4.5 ± 0.8); (2) Structural, geographic, and financial barriers-20/32 (62.5%) reported challenges attending therapy (mean importance 3.8 ± 0.9), with a distinct urban/rural pattern; (3) Perceived therapy outcomes as a facilitator-all 32 participants discussed visible speech progress as the primary motivator for continuation (mean importance 4.7 ± 0.6); and (4) Social, emotional, and cultural impact-22/32 (68.8%) described stigma, psychosocial burden, and protective family support (mean importance 4.2 ± 0.7). CONCLUSION: Continuity of speech therapy is contingent on timely information, accessible care models, and empowered family engagement. Structured information at diagnosis, teletherapy, community rehabilitation worker models, and parent-implemented home programmes represent actionable, context-appropriate solutions. WHAT THIS STUDY ADDS: What is already known on this subject Existing research on cleft palate (CP) in low- and middle-income countries (LMICs), highlights significant barriers to speech therapy access, such as limited local SLP providers, financial constraints, long travel distances, and resource shortages. Studies document high unmet needs for rehabilitative care, delayed intervention, and caregiver concerns about speech outcomes, social impacts, and information gaps at diagnosis. Qualitative work from LMICs has explored general parental experiences, psychosocial challenges, and treatment pathways, but caregiver perspectives specifically on facilitators and barriers to initiating and continuing speech therapy remain limited. What this study adds to existing knowledge This qualitative study provides novel, in-depth insights from 32 LMICs caregivers on facilitators and barriers to accessing and continuing speech therapy for children with non-syndromic cleft palate in a high-burden LMIC setting. Using reflexive thematic analysis, it identifies four key themes: information deficits delaying early engagement; structural/geographic/financial barriers with urban-rural contrasts; perceived therapy benefits as the main continuation driver; and broader social/emotional/cultural impacts. It offers the first detailed, context-specific exploration of these issues from a tertiary centre perspective. What are the potential or actual clinical implications of this study? Findings underscore the need for improved information delivery at diagnosis to promote early SLP referral and engagement. Clinicians should address urban-rural disparities through targeted strategies, such as telepractice or community outreach for geographic/financial barriers. Emphasizing observable therapy benefits may enhance continuation rates. Recommendations include multidisciplinary training for non-specialists, culturally sensitive guidance, policy support for affordable SLP services, and community programs to reduce stigma and emotional burden-ultimately improving access, adherence, and outcomes in resource-constrained LMIC settings. PRACTITIONER POINTS: Information deficits at diagnosis are a major barrier to early speech therapy engagement for children with cleft palate in LMICs-clinicians should prioritize clear, timely education. Structural and geographic barriers differ markedly between urban and rural caregivers; telepractice and community outreach may improve access and continuation. Perceived positive therapy outcomes strongly facilitate ongoing attendance-emphasizing observable benefits can enhance adherence in resource-limited settings.

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