Journal article
Understanding and participation in genetics research among Nigerian mothers of children with orofacial cleft: a qualitative study of prior genetic study participants
BMC oral health
08/25/2026
DOI: 10.1186/s12903-026-09285-4
Abstract
Background
This study sought to identify strategies to increase the level of participation of orofacial cleft (OFC) caregivers in craniofacial genetics research as well as assess their understanding of genomics research and secondary findings (SF).
Methods
This was a qualitative study. After obtaining informed consent, we conducted four focus groups with an average of 7 participants per group. The study participants (females) were 28 caregivers of children with non-syndromic OFC attending the multidisciplinary outpatient orofacial cleft clinic of a tertiary health facility in Lagos, Nigeria. Caregivers were purposively recruited, and data were analyzed through thematic analysis.
Results
The key findings in this study are (a) voluntary participation in past genetic studies, (b) ongoing interest in participation in genetics research, (c) request for accessibility and explanation of genetic research results, (d) limited general knowledge of genetics and genetic testing and (f) a relatively low understanding of secondary findings.
Conclusion
The participant’s responses highlighted the need for use of simple and relatable language in OFC- related study information documents, including the informed consent form. There was a strong desire to have results returned, including SF among interviewees. However, there is need for increased participant education on the concept of SF. Importantly, there is a need to bridge the gap in workforce and health care provider education to provide genetic counseling services in resource-constrained settings.
Details
- Title: Subtitle
- Understanding and participation in genetics research among Nigerian mothers of children with orofacial cleft: a qualitative study of prior genetic study participants
- Creators
- Adegbayi Adeola Adekunle - Lagos University Teaching HospitalAbimbola Oladayo - A.T. Still UniversityBolaji Akala - Lagos State Health Service CommissionLord Jephthah Joojo Gowans - Kwame Nkrumah University of Science and TechnologyWaheed Awotoye - University of IowaAzeez Alade - University of IowaTamara Busch - University of IowaEmmanuel Aladenika - University of IowaVeronica Sule - Creighton UniversityMekonen A. Eshete - Addis Ababa UniversityOluwanifemi Ayelomi - Lagos University Teaching HospitalAdejoke Babatunde - Lagos University Teaching HospitalWasiu L. Adeyemo - University of LagosOlugbemiga M. Ogunlewe - University of LagosOlawale O. Adamson - University of LagosPeter A. Mossey - Dundee Dental HospitalAdebowale A. Adeyemo - National Human Genome Research InstituteNnenna Mba-Oduwusi - Lagos State Health Service CommissionOluwafemi Adeagbo - University of IowaAzeez Butali - University of Iowa
- Resource Type
- Journal article
- Publication Details
- BMC oral health
- DOI
- 10.1186/s12903-026-09285-4
- ISSN
- 1472-6831
- eISSN
- 1472-6831
- Publisher
- Springer Nature
- Language
- English
- Electronic publication date
- 08/25/2026
- Academic Unit
- Orthodontics; Oral Pathology, Radiology and Medicine; Stead Family Department of Pediatrics; Craniofacial Anomalies Research Center; Dental Research; Community and Behavioral Health
- Record Identifier
- 9985220185302771
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