caa a22 4500 605545103 CHVBK 20210128100934.0 cr unu---uuuuu 210128e20150401xx s 000 0 eng 10.1007/s10897-014-9759-7 doi (NATIONALLICENCE)springer-10.1007/s10897-014-9759-7 Using Formative Research to Develop a Counselor Training Program for Newborn Screening in Ghana [Elektronische Daten] [Marsha Treadwell, Kofi Anie, Althea Grant, Solomon Ofori-Acquah, Kwaku Ohene-Frempong] Sickle cell disease (SCD), sickle cell trait (SCT) and related conditions are highly prevalent in sub-Saharan Africa. Despite the public health implications, there is limited understanding of the unique needs regarding establishing and implementing extensive screening for newborns and appropriate family counseling. We sought to gain understanding of community attitudes and beliefs about SCD/SCT from counselors and potential counselors in Ghana; obtain their input about goals for counseling following newborn screening; and obtain guidance about developing effective counselor education. Five focus groups with 32 health care providers and health educators from 9 of 10 regions in Ghana were conducted by trained facilitators according to a structured protocol. Qualitative data were coded and categorized to reflect common themes. Saturation was achieved in themes related to genetics/inheritance; common complications of SCD; potential for stigmatization; marital strain; and emotional stress. Misconceptions about SCT as a form of SCD were prevalent as were cultural and spiritual beliefs about the causes of SCD/SCT. Potential positive aspects included affected children′s academic achievement as compensation for physical limitations, and family cohesion. This data informed recommendations for content and structure of a counselor training program that was provided to the Ministry of Health in Ghana. National Society of Genetic Counselors, Inc., 2014 Genetic counseling nationallicence newborn infant screening nationallicence formative research nationallicence counselor training nationallicence sickle cell disease nationallicence Ghana nationallicence Treadwell Marsha Hematology/Oncology Department, UCSF Benioff Children′s Hospital Oakland, 747 52nd Street, 94609, Oakland, CA, USA aut Anie Kofi Haematology and Sickle Cell Centre, North West London Hospitals, National Health Service (NHS) Trust, Central Middlesex Hospital Acton Lane, NW10 7NS, London, UK aut Grant Althea Epidemiology and Surveillance Branch, National Center for Birth Defects and Developmental Disabilities, Division of Blood Disorders, Centers for Disease Control and Prevention, 1600 Clifton Road, MS E64, 30333, Atlanta, GA, USA aut Ofori-Acquah Solomon Center for Translational and International Hematology, Vascular Medicine Institute, University of Pittsburgh, 200 Lothrop Street, 15262, Pittsburgh, PA, USA aut Ohene-Frempong Kwaku Sickle Cell Foundation of Ghana, 4 Harper Road, 3rd Floor Adum, Kumasi, Ghana aut Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/2(2015-04-01), 267-277 1059-7700 24:2<267 2015 24 10897 https://doi.org/10.1007/s10897-014-9759-7 text/html Onlinezugriff via DOI BK010053 XK010053 XK010000 Metadata rights reserved Springer special CC-BY-NC licence nationallicence 1 research-article jats NATIONALLICENCE NATIONALLICENCE NL-springer NATIONALLICENCE 856 40 https://doi.org/10.1007/s10897-014-9759-7 text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Treadwell Marsha Hematology/Oncology Department, UCSF Benioff Children′s Hospital Oakland, 747 52nd Street, 94609, Oakland, CA, USA aut NATIONALLICENCE 700 1- Anie Kofi Haematology and Sickle Cell Centre, North West London Hospitals, National Health Service (NHS) Trust, Central Middlesex Hospital Acton Lane, NW10 7NS, London, UK aut NATIONALLICENCE 700 1- Grant Althea Epidemiology and Surveillance Branch, National Center for Birth Defects and Developmental Disabilities, Division of Blood Disorders, Centers for Disease Control and Prevention, 1600 Clifton Road, MS E64, 30333, Atlanta, GA, USA aut NATIONALLICENCE 700 1- Ofori-Acquah Solomon Center for Translational and International Hematology, Vascular Medicine Institute, University of Pittsburgh, 200 Lothrop Street, 15262, Pittsburgh, PA, USA aut NATIONALLICENCE 700 1- Ohene-Frempong Kwaku Sickle Cell Foundation of Ghana, 4 Harper Road, 3rd Floor Adum, Kumasi, Ghana aut NATIONALLICENCE 773 0- Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/2(2015-04-01), 267-277 1059-7700 24:2<267 2015 24 10897