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Exploring Caregivers Lived Experiences in Accessing Comprehensive Cleft Care at Jimma University Medical Center: A Phenomenological Study in Southwest Ethiopia

Year: 2026

Type: article

Abstract: Background: Orofacial clefts are one of the most common congenital anomalies worldwide. Comprehensive cleft care interventions aim to address the complex surgical, nutritional, dental, speech, audiology, and psychosocial needs of patients with clefts. While studies from other countries have identified various implementation barriers and facilitators, evidence from Ethiopia remains limited, particularly regarding caregivers’ experiences accessing comprehensive cleft care. This study explored caregivers’ lived experiences of accessing comprehensive cleft care at Jimma University Medical Center in southwestern Ethiopia. Methods: We conducted a phenomenological study at the Comprehensive Cleft Care Center of Jimma University Medical Center. Participants were purposively selected from caregivers of children with orofacial clefts who had received at least two components of comprehensive cleft care. Data were collected through in-depth semi-structured interviews. Data collection continued until thematic saturation was achieved. Audio recordings were transcribed verbatim, translated into English, and managed in ATLAS.ti version 7.5.18. Data were analyzed inductively using Colaizzi’s seven-step descriptive phenomenological method. Trustworthiness was enhanced through member checking, reflexive bracketing, and systematic procedures. Results: Twelve caregivers of children with orofacial clefts participated in the study. The analysis generated eight overarching themes. Participants reported limited initial awareness of cleft conditions, cultural misconceptions, stigma, emotional distress, and delayed care-seeking. Key barriers included poor referral linkages, transportation difficulties, financial constraints, and geographic inaccessibility. Participants reported that engagement with comprehensive cleft care was associated with increased knowledge, caregiving confidence and skills, and trust in healthcare providers. They also described perceived improvements in feeding, nutritional status, speech development, physical appearance, and social integration, alongside reduced stigma and increased caregiver advocacy and community awareness of cleft conditions. Conclusions: Caregivers described a transition from limited awareness of orofacial clefts, emotional distress, stigma, and challenges accessing care toward greater knowledge, confidence, trust in healthcare providers, and perceived improvements in their children’s health, functional abilities, and social participation. Persistent barriers related to poverty, transportation difficulties, referral delays, and limited community awareness remained. These findings can inform policy and program planning to strengthen comprehensive cleft care and address inequities in access to care for children with orofacial clefts and their families in similar settings in Ethiopia.

Source: Children

DOI: 10.3390/children13101372

Authors: Abiy Semunigus Dejene, Allyn Auslander, Abraham Tamirat Gizaw, Fira Abamecha Ababulgu, Elias Ali Yesuf

Institutions: Jimma University, Operation PAR

Language: English

Topic: Cleft Lip and Palate Research

Subfield: Genetics

Field: Biochemistry, Genetics and Molecular Biology

Domain: Life Sciences

SDGs: Good health and well-being, Reduced inequalities

Open Access status: gold

Estimated APC paid: $2,896