ArticleJournal of genetic counseling2015
Using formative research to develop a counselor training program for newborn screening in Ghana.
Article in Journal of genetic counseling, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers, 3 of them syntheses that pooled it.
What it found
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
15 citing papers in PubMed, 3 syntheses or guidelines pooled it, 27 citations in OpenAlex.
- A qualitative evidence synthesis on perinatal screening for sickle cell disease in high-burden countries.BMC global and public health · 2026Pooled it
- Implementation factors of non-communicable disease policies and programmes for children and youth in low-income and middle-income countries: a systematic review.BMJ paediatrics open · 2024Pooled it
- Sustainability of newborn screening for sickle cell disease in resource-poor countries: A systematic review.PloS one · 2024Pooled it
- Th role of counselling to reduce parental fears and anxiety about newborn screening for sickle cell disease in Northern Ghana.BMC public health · 2025Article
- The intersection of sickle cell disease, stigma, and pain in Africa.Hematology. American Society of Hematology. Education Program · 2024Review
- Caught between pity, explicit bias, and discrimination: a qualitative study on the impact of stigma on the quality of life of persons living with sickle cell disease in three African countries.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024Article
- Sickle Cell Disease in Children: Knowledge and Home-Based Management Strategies among Caregivers at a Tertiary Facility in Northern Ghana.BioMed research international · 2022Article
- The Crisis of Sickle Cell Disease in Africa from Insights into Primary Prevention in Ghana and Nigeria: Notes from the Field.Journal of immigrant and minority health · 2021Article
- Influence of gender norms in relation to child's quality of care: follow-up of families of children with SCD identified through NBS in Tanzania.Journal of community genetics · 2021Article
- Empowering newborn screening programs in African countries through establishment of an international collaborative effort.Journal of community genetics · 2020Article
- Theory-driven formative research to inform the design of a national sanitation campaign in Tanzania.PloS one · 2019Article
- Relation Between Religious Perspectives and Views on Sickle Cell Disease Research and Associated Public Health Interventions in Ghana.Journal of genetic counseling · 2018Article
- Assessment of Transition Readiness in Adolescents with Sickle Cell Disease and their Caretakers, A single institution experience.International journal of hematology research · 2017Article
- Community engagement to inform the development of a sickle cell counselor training and certification program in Ghana.Journal of community genetics · 2016Article
- Community Health Workers as Support for Sickle Cell Care.American journal of preventive medicine · 2016Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 4 institutions in 2 countries.
Funding
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.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.