Assessing the Psychosocial Impacts of Whole-Genome Sequencing Outcomes on Orofacial Cleft Caregivers in Nigeria: A Mixed-Methods Study

Abimbola M Oladayo; Veronica Sule; Yewande Oshodi; Adegbayi A Adekunle; Wasiu L Adeyemo; Oluwagbemiga Ogunlewe; Oluwanifemi Ayelomi; Adejoke Babatunde; Boluwatife Aikomo; Abosede Ajadi; Shareef M Dabdoub; Chandler Pendleton; Tamara Busch; Azeez Alade; Mojisola Olujitan; Emmanuel Aladenika; Waheed Awotoye; Lord J J Gowans; Mekonen Eshete; Colleen Campbell; Daniel J Caplan; Oluwafemi Adeagbo; Peter A Mossey; Adebowale A Adeyemo; Jeffrey C Murray; Anya E R Prince; Azeez Butali

doi:10.1177/10556656251332351

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Assessing the Psychosocial Impacts of Whole-Genome Sequencing Outcomes on Orofacial Cleft Caregivers in Nigeria: A Mixed-Methods Study

Journal article

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Assessing the Psychosocial Impacts of Whole-Genome Sequencing Outcomes on Orofacial Cleft Caregivers in Nigeria: A Mixed-Methods Study

Abimbola M Oladayo, Veronica Sule, Yewande Oshodi, Adegbayi A Adekunle, Wasiu L Adeyemo, Oluwagbemiga Ogunlewe, Oluwanifemi Ayelomi, Adejoke Babatunde, Boluwatife Aikomo, Abosede Ajadi, …

The Cleft palate-craniofacial journal, Vol.63(5), pp.1135-1150

05/2026

DOI: 10.1177/10556656251332351

PMID: 40223298

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Abstract

ObjectiveTo investigate the behavioral outcomes of children with clefts and the psychosocial impact and mental health experiences of their caregivers regarding unintended outcomes of genomic sequencing, that is, secondary genetic findings (SFs).DesignConvergent parallel mixed methods. The cleft and immunization clinics at the Lagos University Teaching, Hospital, Nigeria.ParticipantsIn total, 127 cases and 158 control caregiver child dyads (quantitative) and 22 caregivers of children with clefts (qualitative).Main Outcome MeasuresStandardized questionnaires were used to assess caregiver-reported mental health, quality of life (QoL), and their children's behavioral difficulties. In 2 focus groups, participants shared their perspectives on genomic testing outcomes, including SFs, mental health, and expectations in the context of clefts.ResultsCompared to the control group, caregivers of children with clefts reported poorer mental health, lower QoL and more behavioral difficulties in their children. Also, they believed that introducing genomic testing outcomes, including SFs, may exacerbate existing burdens. Following qualitative data analyses, 5 themes emerged-genetics knowledge/awareness, stressors, cognitive appraisals, coping/support strategies, and negative impact/positive gains. Both qualitative and quantitative results showed that caring for children with clefts required significant financial resources placing substantial stress on caregivers.ConclusionsThese findings highlight the importance of addressing caregivers' psychosocial needs and the need for proactive measures to prepare for the return of genomic sequencing outcomes to patients and research participants, particularly in resource-limited settings like Africa, where such support may be lacking.

Mental Health

Nigeria

orofacial clefts

psychosocial impact

ELSI

transactional theory of stress and coping

Details

Title: Subtitle: Assessing the Psychosocial Impacts of Whole-Genome Sequencing Outcomes on Orofacial Cleft Caregivers in Nigeria: A Mixed-Methods Study
Creators: Abimbola M Oladayo - A.T. Still University
Veronica Sule - Creighton University
Yewande Oshodi - University of Lagos
Adegbayi A Adekunle - University Teaching Hospital
Wasiu L Adeyemo - University Teaching Hospital
Oluwagbemiga Ogunlewe - University Teaching Hospital
Oluwanifemi Ayelomi - University Teaching Hospital
Adejoke Babatunde - University Teaching Hospital
Boluwatife Aikomo - University of Lagos
Abosede Ajadi - University of Lagos
Shareef M Dabdoub - Division of Biostatistics and Computational Biology, College of Dentistry, University of Iowa, Iowa City, IA, USA
Chandler Pendleton - University of Iowa
Tamara Busch - University of Iowa
Azeez Alade - University of Iowa
Mojisola Olujitan - University of Iowa
Emmanuel Aladenika - Iowa Institute for Oral Health Research, University of Iowa, Iowa City, IA, USA
Waheed Awotoye - University of Iowa
Lord J J Gowans - Kwame Nkrumah University of Science and Technology
Mekonen Eshete - Addis Ababa University
Colleen Campbell - Department of Internal Medicine, Division of Cardiovascular Medicine, University of Iowa, Iowa City, IA, USA
Daniel J Caplan - University of Iowa
Oluwafemi Adeagbo - University of Iowa
Peter A Mossey - University of Dundee
Adebowale A Adeyemo - National Human Genomic Research Institute, Bethesda, MD, USA
Jeffrey C Murray - University of Iowa
Anya E R Prince - University of Iowa
Azeez Butali - Iowa Institute for Oral Health Research, University of Iowa, Iowa City, IA, USA
Resource Type: Journal article
Publication Details: The Cleft palate-craniofacial journal, Vol.63(5), pp.1135-1150
DOI: 10.1177/10556656251332351
PMID: 40223298
NLM abbreviation: Cleft Palate Craniofac J
ISSN: 1055-6656
eISSN: 1545-1569
Publisher: SAGE PUBLICATIONS INC
Grant note: National Institute of Dental and Craniofacial ResearchCollege of Dentistry, University of Lagos, Nigeria
We thank our collaborators at the College of Medicine and College of Dentistry, University of Lagos, Nigeria. We also appreciate the caregivers and families that participated in this study.
Language: English
Electronic publication date: 04/13/2025
Date published: 05/2026
Academic Unit: Preventive and Community Dentistry; Oral Pathology, Radiology and Medicine; Pediatric Dentistry; Craniofacial Anomalies Research Center; Anatomy and Cell Biology; Stead Family Department of Pediatrics; Epidemiology; Cardiovascular Medicine; Dental Research; Community and Behavioral Health; Law Faculty; Periodontics; Internal Medicine
Record Identifier: 9984810949802771

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