ArticleJournal of community genetics2016
Community engagement to inform the development of a sickle cell counselor training and certification program in Ghana.
Article in Journal of community genetics, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers, 4 of them syntheses that pooled it.
What it found
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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.
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.
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Who cites it
19 citing papers in PubMed, 4 syntheses or guidelines pooled it.
- A qualitative evidence synthesis on perinatal screening for sickle cell disease in high-burden countries.BMC global and public health · 2026Pooled it
- Implementation factors of non-communicable disease policies and programmes for children and youth in low-income and middle-income countries: a systematic review.BMJ paediatrics open · 2024Pooled it
- Sustainability of newborn screening for sickle cell disease in resource-poor countries: A systematic review.PloS one · 2024Pooled it
- Consumers' and health providers' views and perceptions of partnering to improve health services design, delivery and evaluation: a co-produced qualitative evidence synthesis.The Cochrane database of systematic reviews · 2023Pooled it
- Ethical, Legal, and Social Implications of Newborn Screening in Africa: A Scoping Review.International journal of neonatal screening · 2026Review
- EHA Recommendations for preconceptual and antenatal screening and prenatal diagnosis for hemoglobinopathies.HemaSphere · 2026Article
- A health literate evaluation of a reproductive health education program for young men with sickle cell disease.Journal of communication in healthcare · 2026Article
- Newborn Screening for Hemoglobinopathies and Thalassemias: Brief History, Recent Activities, and Global Status-2026.International journal of neonatal screening · 2026Review
- Sickle cell disease and maternity care: A qualitative synthesis of women's and health providers experiences.PloS one · 2026Article
- Haematologists as Genetic Counsellors for Haemoglobinopathies: Are They Prepared?Hematology reports · 2025Review
- The intersection of sickle cell disease, stigma, and pain in Africa.Hematology. American Society of Hematology. Education Program · 2024Review
- Engaging communities: A scoping literature review of community-based participatory research in genetics service delivery settings.Journal of community genetics · 2024Article
- What's in a name? Unpacking 'CommunityBMJ global health · 2023Article
- Diagnosis patterns of sickle cell disease in Ghana: a secondary analysis.BMC public health · 2021Article
- Feasibility of establishing a network of community health workers to support care of people with sickle cell disease in Kumasi, Ghana.Journal of community genetics · 2021Article
- Empowering newborn screening programs in African countries through establishment of an international collaborative effort.Journal of community genetics · 2020Article
- Optimizing G6PD testing forWellcome open research · 2020Review
- Utilising the 'Getting to OutcomesInternational journal of neonatal screening · 2018Article
- Relation Between Religious Perspectives and Views on Sickle Cell Disease Research and Associated Public Health Interventions in Ghana.Journal of genetic counseling · 2018Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
10 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Sickle cell disease (SCD) and sickle cell trait (SCT) are highly prevalent in Africa. Despite public health implications, there is limited understanding of community issues for implementing newborn screening and appropriate family counseling. We conducted a 3-day workshop in Kumasi, Ghana, with community leaders as lay program development advisors to assist the development and implementation of a Sickle Cell Counselor Training and Certification Program. We employed qualitative methods to understand cultural, religious, and psychosocial dimensions of SCD and SCT, including the advisors' attitudes and beliefs in relation to developing a culturally sensitive approach to family education and counseling that is maximally suited to diverse communities in Ghana. We collated advisors' discussions and observations in order to understand community issues and potential challenges and guide strategies for advocacy in SCD family education and counseling. Results from the workshop revealed that community leaders representing diverse communities in Ghana were engaged constructively in discussions about developing a culturally sensitive counselor training program. Key findings included the importance of improved knowledge about SCD among the public and youth in particular, the value of stakeholders such as elders and religious and traditional leaders, and government expectations of reduced SCD births. We submitted a report to the Ministry of Health in Ghana with recommendations for the next steps in developing a national sickle cell counselor training program. We named the program "Genetic Education and Counseling for Sickle Cell Conditions in Ghana" (GENECIS-Ghana). The first GENECIS-Ghana Training and Certification Program Workshop was conducted from June 8 to 12, 2015.
Identifiers
What OpenQuestion holds
Registered trials
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.