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Using Formative Research to Develop a Counselor Training Program for Newborn Screening in Ghana

Identifieur interne : 000380 ( Pmc/Corpus ); précédent : 000379; suivant : 000381

Using 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-Frempong

Source :

RBID : PMC:4501216

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

Links to Exploration step

PMC:4501216

Le document en format XML

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<name sortKey="Anie, Kofi A" sort="Anie, Kofi A" uniqKey="Anie K" first="Kofi A." last="Anie">Kofi A. Anie</name>
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<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>
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<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>
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<journal-id journal-id-type="nlm-journal-id">9206865</journal-id>
<journal-id journal-id-type="pubmed-jr-id">25587</journal-id>
<journal-id journal-id-type="nlm-ta">J Genet Couns</journal-id>
<journal-id journal-id-type="iso-abbrev">J Genet Couns</journal-id>
<journal-title-group>
<journal-title>Journal of genetic counseling</journal-title>
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<issn pub-type="ppub">1059-7700</issn>
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<article-title>Using Formative Research to Develop a Counselor Training Program for Newborn Screening in Ghana</article-title>
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<name>
<surname>Treadwell</surname>
<given-names>Marsha J.</given-names>
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<email>mtreadwell@mail.cho.org</email>
<aff id="A1">Hematology/Oncology Department, UCSF Benioff Children's Hospital Oakland, 747 52nd Street, Oakland, CA 94609, USA</aff>
</contrib>
<contrib contrib-type="author">
<name>
<surname>Anie</surname>
<given-names>Kofi A.</given-names>
</name>
<email>kofi.anie@nhs.net</email>
<aff id="A2">Haematology and Sickle Cell Centre, North West London Hospitals, National Health Service (NHS) Trust, Central Middlesex Hospital Acton Lane, London NW10 7NS, UK</aff>
</contrib>
<contrib contrib-type="author">
<name>
<surname>Grant</surname>
<given-names>Althea M.</given-names>
</name>
<email>agrant@cdc.gov</email>
<aff id="A3">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, Atlanta, GA 30333, USA</aff>
</contrib>
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<name>
<surname>Ofori-Acquah</surname>
<given-names>Solomon F.</given-names>
</name>
<email>sfo2@pitt.edu</email>
<aff id="A4">Center for Translational and International Hematology, Vascular Medicine Institute, University of Pittsburgh, 200 Lothrop Street, Pittsburgh, PA 15262, USA</aff>
</contrib>
<contrib contrib-type="author">
<name>
<surname>Ohene-Frempong</surname>
<given-names>Kwaku</given-names>
</name>
<email>ohene@sicklecellghana.org</email>
<aff id="A5">Sickle Cell Foundation of Ghana, 4 Harper Road, 3rd Floor Adum, Kumasi, Ghana</aff>
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<pub-date pub-type="nihms-submitted">
<day>30</day>
<month>6</month>
<year>2015</year>
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<pub-date pub-type="epub">
<day>07</day>
<month>9</month>
<year>2014</year>
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<pub-date pub-type="ppub">
<month>4</month>
<year>2015</year>
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<pub-date pub-type="pmc-release">
<day>01</day>
<month>4</month>
<year>2016</year>
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<volume>24</volume>
<issue>2</issue>
<fpage>267</fpage>
<lpage>277</lpage>
<pmc-comment>elocation-id from pubmed: 10.1007/s10897-014-9759-7</pmc-comment>
<permissions>
<copyright-statement>© National Society of Genetic Counselors, Inc. 2014</copyright-statement>
<copyright-year>2014</copyright-year>
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<abstract>
<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>
</abstract>
<kwd-group>
<kwd>Genetic counseling</kwd>
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<kwd>formative research</kwd>
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<kwd>sickle cell disease</kwd>
<kwd>Ghana</kwd>
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