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

Abstract

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.

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

“…They expressed that public education will go a long way to ameliorating public discourses around SCD as a curse or punishment and allow for conventional medical management of SCD while allowing individuals to practice their faith to cope with the complications of the disease. Previous researchers have cited the importance of embedding SCD public health and health education interventions within faith‐based communities (Anie et al ; Dennis‐Antwi et al ; Treadwell et al ).…”

“…With a broader knowledge base, religious leaders might be persuaded to take a less directive approach to counseling, leaving counseling about informed reproductive decision‐making to healthcare providers. Healthcare providers themselves in Ghana have lacked adequate knowledge and training in nondirective counseling about SCD and sickle cell trait, but we were able to expand their understanding and awareness of these techniques with our short course for nurses and health educators—Genetic Education and Counseling for Sickle Cell Conditions in Ghana (GENECIS‐Ghana; (Anie et al )). We found that participants embraced this education, recognizing the importance of empowering individuals and couples to weigh options and make informed decisions that they deem appropriate for themselves or their families.…”

“…Studies evaluating the acceptability of such sickle cell related interventions as newborn screening, prenatal diagnosis and trait testing have only recently been implemented in Ghana (Anie et al 2016;Dennis-Antwi et al 2008;Treadwell et al 2015). In contrast to the strong prohibitions against marriage of AS/AS couples and termination of SCD affected pregnancies in Ghana, adult patients with SCD in Cameroon (Wonkam et al 2014a) and parents of children with SCD in Cameroon (Wonkam et al 2011) indicated in response to a survey that they would find prenatal diagnosis highly acceptable F I G U R E 1 Model of relationships between religion/spirituality and sickle cell-related health behaviors and research participation in Ghana.…”

“…Genetic counseling focuses on giving fundamental, balanced information and nondirective assistance in the decision‐making process (LeRoy ; Stern ). In contrast, couples at risk for having children with SCD can be prevented from marriage by Christian churches in Ghana (Anie et al ; Dennis‐Antwi et al ; Treadwell et al ). Further, traditionalist religions and cultural practices, based on supernatural beliefs, can stigmatize individuals with SCD.…”

Self-care practice in people with sickle cell anemia

“…Sickle cell anemia (SCA) has been acknowledged to have a global public health impact (1) by the World Health Organization and United Nations. Over 300,000 babies are born worldwide annually with the Hb SS type of sickle cell disease (SCD) mostly in low-and middle-income countries (2) . This is considered the most prevalent hereditary chronic disease in Brazil (3) , where its distribution is quite heterogeneous, being more prevalent in the North and Northeast regions, ranging from 6% to 10%, due to a higher number of African descendants, whereas in the South and Southeast regions the prevalence is lower, from 2% to 6% (4) .…”