Evidence map›Paper›PMID 36634397›Full record

ArticleJournal of stroke and cerebrovascular diseases : the official journal of National Stroke Association2023

Are there differences in perceptions, preferences and attitudes towards disclosure of genetic testing for Stroke? A qualitative study among stroke-free SIREN-SIBS genomics study participants.

Oyedunni Arulogun, Michelle Nichols, Carolyn Jenkins, Adekunle Gregory Fakunle, Onoja Akpa, Fred S Sarfo, Albert Akpalu, Kolawole Wahab, Reginald Obiako, Morenikeji Komolafe and 26 more

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In one paragraph

Article in Journal of stroke and cerebrovascular diseases : the official journal of National Stroke Association, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
0.3field-weighted citation impact, top 32% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed, 1 citations in OpenAlex.

  1. Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

36 authors at 15 institutions in 6 countries.

Oyedunni ArulogunDepartment of Health Promotion and Education, University of Ibadan, Nigeria.
Michelle NicholsCollege of Nursing, Medical University of South Carolina, South Carolina, USA.
Carolyn JenkinsCollege of Nursing, Medical University of South Carolina, South Carolina, USA.
Adekunle Gregory FakunleDepartment of Medicine, College of Medicine, University of Ibadan, Nigeria; Department of Public Health, Osun State University, Osogbo, Nigeria.
Onoja AkpaDepartment of Epidemiology and Medical Statistics, University of Ibadan, Nigeria; Institute of Cardiovascular Diseases, College of Medicine, University of Ibadan, Nigeria.
Fred S SarfoDepartment of Medicine, Kwame Nkrumah University of Science and Technology, Ghana.
Albert AkpaluDepartment of Medicine, University of Ghana Medical School, Accra, Ghana.
Kolawole WahabDepartment of Medicine, University of Ilorin Teaching Hospital, Ilorin, Nigeria.
Reginald ObiakoDepartment of Medicine, Ahmadu Bello University, Zaria, Nigeria.
Morenikeji KomolafeDepartment of Medicine, Obafemi Awolowo University Teaching Hospital, Ile-Ife, Nigeria.
Lukman OwolabiDepartment of Medicine, Aminu Kano Teaching Hospital, Kano, Nigeria.
Godwin O OsaigbovoJos University Teaching Hospital Jos, Nigeria.
Akinkunmi Paul OkekunleDepartment of Medicine, College of Medicine, University of Ibadan, Nigeria; Department of Food and Nutrition, Seoul National University, Seoul, Korea.
Joshua AkinyemiDepartment of Epidemiology and Medical Statistics, University of Ibadan, Nigeria.
Godwin OgboleDepartment of Radiology, University of Ibadan, Nigeria.
Benedict Calys-TagoeDepartment of Medicine, University of Ghana Medical School, Accra, Ghana.
Adeniji AdeleyeDepartment of Medicine, Federal Medical Centre, Abeokuta, Nigeria.
Yaw MensahDepartment of Medicine, Kwame Nkrumah University of Science and Technology, Ghana.
Osahon Jeffery AsowataDepartment of Epidemiology and Medical Statistics, University of Ibadan, Nigeria.
Abiodun M AdeoyeDepartment of Medicine, College of Medicine, University of Ibadan, Nigeria.
Lambert AppiahDepartment of Medicine, Kwame Nkrumah University of Science and Technology, Ghana.
Arti SinghDepartment of Medicine, Kwame Nkrumah University of Science and Technology, Ghana.
Philip AdebayoAga-Khan University Dar es Salaam, Tanzania.
Donna ArnettCollege of Public Health, University of Kentucky, USA.
Hemant K TiwariThe University of Alabama at Birmingham, Birmingham, Alabama, USA.
Daniel LacklandCollege of Nursing, Medical University of South Carolina, South Carolina, USA.
Philip IbinaiyeDepartment of Medicine, Ahmadu Bello University, Zaria, Nigeria.
Wisdom OguikeDepartment of Medicine, Ahmadu Bello University, Zaria, Nigeria.
Chimdinma MelikamDepartment of Medicine, Ahmadu Bello University, Zaria, Nigeria.
Adeniyi SundayDepartment of Medicine, University of Ghana Medical School, Accra, Ghana.
Abiodun BelloDepartment of Medicine, University of Ilorin Teaching Hospital, Ilorin, Nigeria.
Okechukwu OgahDepartment of Medicine, College of Medicine, University of Ibadan, Nigeria.
Rufus AkinyemiDepartment of Medicine, College of Medicine, University of Ibadan, Nigeria; Neuroscience and Ageing Research Unit, Institute for Advanced Medical Research and Training, College of Medicine, University of Ibadan, Nigeria; Center for Genomic and Precision Medicine, College of Medicine, University of Ibadan, Nigeria.
Bruce OvbiageleWeill Institute for Neurosciences, University of California San-Francisco, USA.
Mayowa OwolabiDepartment of Medicine, College of Medicine, University of Ibadan, Nigeria; Center for Genomic and Precision Medicine, College of Medicine, University of Ibadan, Nigeria. Electronic address: mayowaowolabi@yahoo.com.
SIREN
University of Ibadan · NGAhmadu Bello University · NGKwame Nkrumah University of Science and Technology · GHMedical University of South Carolina · USUniversity of Ghana · GHUniversity of Ilorin Teaching Hospital · NGAga Khan University · TZAminu Kano Teaching Hospital · NGFederal Medical Centre · NGJos University Teaching Hospital · NGObafemi Awolowo University · NGSeoul National University · KRUniversity of Alabama at Birmingham · USUniversity of California, San Francisco · USUniversity of Kentucky · US

Funding

H3Africa Administrative Coordinating Centre: Enabling and Supporting Genomics and Health Research Capacity Building in AfricaU24HG009780 · NHGRI · UNIVERSITY OF CAPE TOWN · PI SKELTON, MICHELLE · 2017 to 2022
$4.8M
Stroke Investigative Research & Educational Network (SIREN)U54HG007479 · NHGRI · COLLEGE OF MEDICINE, UNIVERSITY OF IBADAN · PI OVBIAGELE, BRUCE, OWOLABI, MAYOWA OJO · 2013 to 2017
$4.2M
CNV And Stroke (CaNVAS)R01NS114045 · NINDS · UNIVERSITY OF MARYLAND BALTIMORE · PI COLE, JOHN W. · 2020 to 2024
$2.6M
African Rigorous Innovative Stroke Epidemiological Surveillance (ARISES)R01NS115944 · NINDS · COLLEGE OF MEDICINE, UNIVERSITY OF IBADAN · PI OVBIAGELE, BRUCE, OWOLABI, MAYOWA OJO · 2020 to 2025
$2.2M
Systematic Investigation of Blacks with Stroke - Genomics (SIBS-Genomics) StudyR01NS107900 · NINDS · COLLEGE OF MEDICINE, UNIVERSITY OF IBADAN · PI OVBIAGELE, BRUCE, OWOLABI, MAYOWA OJO · 2018 to 2021
$1.8M
Training Africans to Lead and Execute Neurological Trials & Studies (TALENTS)D43TW012030 · FIC · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI OVBIAGELE, BRUCE · 2021 to 2025
$1.2M
African Neurobiobank for Precision Stroke Medicine - (ELSI) ProjectU01HG010273 · NHGRI · COLLEGE OF MEDICINE, UNIVERSITY OF IBADAN · PI AKINYEMI, RUFUS OLUSOLA, ARULOGUN, OYEDUNNI SOLA · 2018 to 2022
$512k
Sub-Saharan Africa Conference on Stroke (SSACS) ConferenceR13NS115395 · NINDS · NORTHERN CALIFORNIA INSTITUTE/RES/EDU · PI OVBIAGELE, BRUCE · 2020 to 2020
$50k
FIC NIH HHS D43 TW012030NHGRI NIH HHS U01 HG010273NHGRI NIH HHS U24 HG009780NHGRI NIH HHS U54 HG007479NINDS NIH HHS R01 NS107900NINDS NIH HHS R01 NS114045NINDS NIH HHS R01 NS115944NINDS NIH HHS R13 NS115395
6 · The paper itself

Abstract

objectiveThis study explored perceptions, preferences and attitudes towards disclosure of genetic testing results for stroke among stroke-free controls (and their family members) in the SIREN-SIBS Genomics Study, healthcare providers and policymakers. MATERIALS AND

methodsWe conducted a qualitative thematic analysis of key informant interviews with 61 participants recruited from community advisory boards (30) and health care providers (31) across seven sites in Nigeria and Ghana.

resultsMajor findings illustrate differences in the knowledge of genetic testing with superior knowledge among health care professionals. Relatives and religious leaders were opined as the best to receive the disclosure as they would be able to break the news to the patient in a culturally sensitive manner to reduce the likely resultant emotional outburst. Poor level of awareness of national guidelines for disclosing genetic results exist. Key facilitating factors for disclosure are education, enabling environment, involvement of religious and community leaders, campaigns, and possible treatment options. Disclosure inhibitors include inadequate information, fear of marital break-up or family displacement, fear of stigmatization, fear of isolation, religious beliefs, health worker attitude, and lack of preparedness to accept results.

conclusionsThese necessitate culturally sensitive interventions for continuing education, increased awareness and sustained engagement to equip all stakeholders in genetic testing disclosure process.

Indexed as

DisclosureHealth PersonnelFamilyGenetic TestingHumansQualitative ResearchAttitudesGenetic test disclosurePerceptionPreference

Identifiers

PMID36634397
PMCPMC9928805
OpenAlexW4315928135

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.