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Community engagement to inform the development of a sickle cell counselor training and certification program in Ghana

Overview of attention for article published in Journal of Community Genetics, April 2016
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Readers on

58 Mendeley
Community engagement to inform the development of a sickle cell counselor training and certification program in Ghana
Published in
Journal of Community Genetics, April 2016
DOI 10.1007/s12687-016-0267-3
Pubmed ID

Kofi A. Anie, Marsha J. Treadwell, Althea M. Grant, Jemima A. Dennis-Antwi, Mabel K. Asafo, Mary E. Lamptey, Jelili Ojodu, Careema Yusuf, Ayo Otaigbe, Kwaku Ohene-Frempong


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.

Mendeley readers

The data shown below were compiled from readership statistics for 58 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 58 100%

Demographic breakdown

Readers by professional status Count As %
Student > Ph. D. Student 10 17%
Student > Master 9 16%
Student > Bachelor 7 12%
Researcher 6 10%
Lecturer 4 7%
Other 10 17%
Unknown 12 21%
Readers by discipline Count As %
Medicine and Dentistry 10 17%
Nursing and Health Professions 7 12%
Social Sciences 5 9%
Biochemistry, Genetics and Molecular Biology 3 5%
Psychology 3 5%
Other 12 21%
Unknown 18 31%