Using Formative Research to Develop a Counselor Training Program for Newborn Screening in Ghana
Identifieur interne : 000418 ( Main/Exploration ); précédent : 000417; suivant : 000419Using Formative Research to Develop a Counselor Training Program for Newborn Screening in Ghana
Auteurs : Marsha J. Treadwell ; Kofi A. Anie ; Althea M. Grant ; Solomon F. Ofori-Acquah ; Kwaku Ohene-FrempongSource :
- Journal of genetic counseling [ 1059-7700 ] ; 2014.
Abstract
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.
Url:
DOI: 10.1007/s10897-014-9759-7
PubMed: 25193810
PubMed Central: 4501216
Affiliations:
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Treadwell</name></author><author><name sortKey="Anie, Kofi A" sort="Anie, Kofi A" uniqKey="Anie K" first="Kofi A." last="Anie">Kofi A. Anie</name></author><author><name sortKey="Grant, Althea M" sort="Grant, Althea M" uniqKey="Grant A" first="Althea M." last="Grant">Althea M. Grant</name></author><author><name sortKey="Ofori Acquah, Solomon F" sort="Ofori Acquah, Solomon F" uniqKey="Ofori Acquah S" first="Solomon F." last="Ofori-Acquah">Solomon F. Ofori-Acquah</name></author><author><name sortKey="Ohene Frempong, Kwaku" sort="Ohene Frempong, Kwaku" uniqKey="Ohene Frempong K" first="Kwaku" last="Ohene-Frempong">Kwaku Ohene-Frempong</name></author></analytic><series><title level="j">Journal of genetic counseling</title><idno type="ISSN">1059-7700</idno><idno type="eISSN">1573-3599</idno><imprint><date when="2014">2014</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en"><p id="P1">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.</p></div></front></TEI><affiliations><list></list><tree><noCountry><name sortKey="Anie, Kofi A" sort="Anie, Kofi A" uniqKey="Anie K" first="Kofi A." last="Anie">Kofi A. Anie</name><name sortKey="Grant, Althea M" sort="Grant, Althea M" uniqKey="Grant A" first="Althea M." last="Grant">Althea M. Grant</name><name sortKey="Ofori Acquah, Solomon F" sort="Ofori Acquah, Solomon F" uniqKey="Ofori Acquah S" first="Solomon F." last="Ofori-Acquah">Solomon F. Ofori-Acquah</name><name sortKey="Ohene Frempong, Kwaku" sort="Ohene Frempong, Kwaku" uniqKey="Ohene Frempong K" first="Kwaku" last="Ohene-Frempong">Kwaku Ohene-Frempong</name><name sortKey="Treadwell, Marsha J" sort="Treadwell, Marsha J" uniqKey="Treadwell M" first="Marsha J." last="Treadwell">Marsha J. 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