Using Formative Research to Develop a Counselor Training Program for Newborn Screening in Ghana.
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 fa...
| Published in: | Journal of Genetic Counseling Vol. 24; no. 2; pp. 267 - 278 |
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| Main Authors: | , , , , |
| Format: | Journal Article |
| Published: |
Wiley-Blackwell
Apr2015
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| Online Access: | View this record in EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=101678245&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 101678245 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 10597700 41A jtl: Journal of Genetic Counseling issn: 10597700 maglogo: N pubinfo: dt: Apr2015 vid: 24 iid: 2 pid: 480 pub: Wiley-Blackwell place: Malden, Massachusetts artinfo: ui: 101678245 103779622 10.1007/s10897-014-9759-7 101678245 ppf: 267 ppct: 11 formats: fmt: @attributes: type: P tig: atl: Using Formative Research to Develop a Counselor Training Program for Newborn Screening in Ghana. aug: au: Treadwell, Marsha Anie, Kofi Grant, Althea Ofori-Acquah, Solomon Ohene-Frempong, Kwaku affil: Hematology/Oncology Department, UCSF Benioff Children′s Hospital Oakland, 747 52nd Street Oakland 94609 USA sug: subj: Counseling Education Neonatal Assessment Education Attitude of Health Personnel Information Needs Needs Assessment Anemia, Sickle Cell Familial and Genetic Sickle Cell Trait Familial and Genetic Ghana Cross Sectional Studies Phenomenological Research Purposive Sample Focus Groups Thematic Analysis Interrater Reliability Human Male Female Adult Descriptive Statistics Funding Source Adult: 19-44 years Male Female ab: 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. pubtype: Academic Journal doctype: Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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