Relation Between Religious Perspectives and Views on Sickle Cell Disease Research and Associated Public Health Interventions in Ghana.

Sickle cell disease (SCD) is highly prevalent in Africa with a significant public health burden for under-resourced countries. We employed qualitative research methods to understand the ethical, legal, and social implications of conducting genomic research in SCD under the Human Heredity and Health in Africa (H3Africa) initiative. The present study focused on religious and cultural aspects of SCD with the view to identifying beliefs and attitudes relevant to public health interventions in Ghana. Thematic analyses from individual and group interviews revealed six key areas of importance, namely, reliance on a supreme being; religion as a disruptive influence on health behaviors; role of religious leaders in information sharing and decision-making; social, religious, and customary norms; health and religious/supernatural beliefs; and need for social education and support through church and community. Findings suggest that public health programs in Ghana should not only aim at increasing knowledge and awareness about SCD and its management but also create an understanding of the relevance of genomics and alternative technological advancement to diagnosis and ethical decision-making around available options for health seeking. Future research should engage communities to help address the ethical and social implications of a persuasive religious influence on SCD-related health decisions.

A qualitative study of cervical cancer and cervical cancer screening awareness among nurses in Ghana.

Despite the availability of cervical cancer screening tools, including those that are appropriate for low resource settings, the rates of preventive cervical cancer screening remain extremely low among women in LMICS. Nurse-led education interventions have been proven to be effective at increasing participation in healthcare recommendations. However, there is a need to determine nurses' knowledge of cervical cancer and cervical cancer prevention in order to develop effective health education interventions. Our goal was to assess Ghanaian nurses' knowledge of cervical cancer and cervical cancer prevention. Interviews and small focus groups were conducted with 42 nurses at two hospitals in Ghana. Awareness of cervical cancer was very high among the nurses. However, the majority of the participants held negative perceptions about cervical cancer and lacked knowledge about cervical cancer risk factors and prevention. The results can be used to inform the development of culturally-relevant cervical cancer education interventions targeted towards women and healthcare providers in LMICs.

'I can die today, I can die tomorrow': lay perceptions of sickle cell disease in Kumasi, Ghana at a point of transition.

OBJECTIVE: To describe the lay meanings of sickle cell disease (SCD) in the Ashanti region of Ghana. DESIGN: Depth interviews with 31 fathers of people with SCD; a focus group with health professionals associated with the newborn sickle cell screening programme, and a focus group with mothers of children with SCD. RESULTS: Whilst there are discourses that associate sickle cell with early or recurrent death, with supernatural undermining of family well-being, and with economic challenges in purchasing medical care, other discourses that value children and other family practices that resist stigma are also in evidence. CONCLUSION: Lay perspectives on SCD are constructed in the contexts of enduring culture (the high value placed on children); changing culture (medicine and research as available alternative discourses to supernatural ones); altered material circumstances (newborn screening producing cohorts of children with SCD); changing political situations (insurance-based treatment); enhanced family resources (the experience of a cohort of young people with SCD). Above all the praxis of successfully caring for a child with SCD, and the political experience of sharing that praxis, stands in opposition to discourses of death and helps parents resist stigma and despair.

The Crisis of Sickle Cell Disease in Africa from Insights into Primary Prevention in Ghana and Nigeria: Notes from the Field.

Sickle cell disease (SCD), an inherited blood disorder, impacts 2% of newborns in Nigeria and Ghana. Despite devastating health consequences, SCD prevention is not a priority in either country. This article describes our U.S. research team's feasibility assessment for adapting CHOICES, a computer-based SCD education program, for use in Ghana and Nigeria. We identified indigenous collaborators by reviewing published research and investigating advocacy organizations online. This led to a fact-finding trip to Africa to discuss SCD prevention with local boards of advisors. Three major recommendations emerged from the group discussions: design a culturally appropriate intervention; enlist community healthcare workers to deliver the CHOICES program; and collaborate with religious and community leaders and elders in public awareness campaigns. Based on extensive advisor input, we will modify the content and delivery of the CHOICES intervention to meet the needs of those impacted by SCD in Ghana and Nigeria.

Community engagement to inform the development of a sickle cell counselor training and certification program in Ghana.

Sickle cell disease (SCD) and sickle cell trait (SCT) are highly prevalent in Africa. Despite public health implications, there is limited understanding of community issues for implementing newborn screening and appropriate family counseling. We conducted a 3-day workshop in Kumasi, Ghana, with community leaders as lay program development advisors to assist the development and implementation of a Sickle Cell Counselor Training and Certification Program. We employed qualitative methods to understand cultural, religious, and psychosocial dimensions of SCD and SCT, including the advisors' attitudes and beliefs in relation to developing a culturally sensitive approach to family education and counseling that is maximally suited to diverse communities in Ghana. We collated advisors' discussions and observations in order to understand community issues and potential challenges and guide strategies for advocacy in SCD family education and counseling. Results from the workshop revealed that community leaders representing diverse communities in Ghana were engaged constructively in discussions about developing a culturally sensitive counselor training program. Key findings included the importance of improved knowledge about SCD among the public and youth in particular, the value of stakeholders such as elders and religious and traditional leaders, and government expectations of reduced SCD births. We submitted a report to the Ministry of Health in Ghana with recommendations for the next steps in developing a national sickle cell counselor training program. We named the program "Genetic Education and Counseling for Sickle Cell Conditions in Ghana" (GENECIS-Ghana). The first GENECIS-Ghana Training and Certification Program Workshop was conducted from June 8 to 12, 2015.