Sickle cell disease awareness and perception among Christian religious leaders in Accra metropolis:A qualitative study

Abstract Introduction Sickle Cell Disease (SCD) is a severe hemoglobin gene mutation disorder inherited from both parents. Two percent of Ghanaian newborns are affected by SCD; one in three Ghanaians has the hemoglobin S gene. Christian religious leaders may play a role in the prevention of SCD through the promotion of genetic counseling, genotype screening for premarital couples, and offering counseling to couples on prenatal screening and diagnosis for SCD. However, little is known about the awareness and perception of SCD among Christian religious leaders in Ghana, and this study aims to explore these. Methods This study adopted a qualitative descriptive design to explore the awareness and perception of SCD among Christian religious leaders in the capital city of Ghana. A purposive sampling technique selected 16 participants from churches under the main Christian groups. The participants were chosen based on their roles and responsibilities within their respective churches. Data was collected using a semi-structured interview guide, which included open-ended questions to encourage participants to share their thoughts and experiences. The interviews were conducted in a private setting to ensure confidentiality. The data was then analyzed using a thematic analysis approach, which involved identifying recurring themes and patterns in the participants' responses. Results The study's findings are crucial. They reveal a high awareness of SCD among Christian religious leaders, but also some misconceptions. Most of the religious leaders knew SCD was a genetic disease, although a few associated SCD with superstitious beliefs, poor dietary intake, and lifestyle. Some also stated that SCD was a disease of the blood group instead of the defective haemoglobin gene. They perceived SCD to be burdensome, disruptive, and draining, and they associated the disease with burnout in Persons Living with SCD (PLWSCD) and their families. The religious leaders had a good social network with PLWSCD, including family, friends, colleagues, and congregants. Conclusion These findings underscore the need for intense education about SCD, especially among Christian religious leaders. It is crucial to engage all stakeholders to intensify public awareness and education about SCD while improving the management and social support systems available to PLWSCD and families. This includes the religious institution's leadership, PLWSCD and families, the Ministry of Health, Ghana Health Service, and the Ghana Education Service. As active stakeholders, religious leaders can play a vital role in supporting PLWSCD if they are equipped with the necessary knowledge about the condition

The perception of parents with a child with sickle cell disease in Ghana towards prenatal diagnosis

Sickle cell disease is a global health concern. In the UK and USA, where the condition is common, prenatal testing is a routine aspect of antenatal care and offered on the basis of informed reproductive choice. Notwithstanding considerable advances in testing technologies, prenatal diagnosis for sickle cell disease is not common in Africa. There is a particular lack of research examining parental perceptions about the acceptability of antenatal screening. This qualitative paper explores the perceptions of parents, who had lived experiences of caring for a child with SCD, towards prenatal testing for sickle cell in Ghana. A purposive sample of 27 parents (four fathers and 23 mothers) was recruited via a sickle cell clinic in Accra, Ghana. Material was collected using semi-structured interview, using a topic guide that explored parental views on prenatal testing, along with factors influencing decision making about antenatal care. The findings shown that parents believed the decision to accept testing should be negotiated between both parents rather than the extended family. The decision to accept testing did not mean that parents would use the information to terminate the pregnancy of a child with SCD. They mentioned that they were more likely to use the test result to prepare themselves for the birth of their child. Parents accepted, however, that choice was important and that some parents may wish to terminate the pregnancy, given the impact of SCD on a person’s quality of life. Parents lack awareness about prenatal testing because the procedure was not part of antenatal services in Ghana. However, the majority would accept testing should the process be available and affordable. The paper suggests that policy needs to establish and promote sickle cell prenatal testing/prenatal diagnosis and awareness among at-risk populations, bearing in mind the cost implication of the technology, equal access to healthcare, and the importance of informed reproductive decision making, which connects to the parents’ experience of testing/screening

Financial Strain and Resilience::A Qualitative Exploration of Parental Perspectives on Caring for Children with Sickle Cell Disease in Ghana

Background In Ghana, nearly one in four (25%) of the population are sickle cell disease carriers. Furthermore, two percent of all babies born (20 for every 1000 live births) has sickle cell disease. However, little is known about how parents negotiate the financial challenges facing parents of a child with sickle cell disease. This study explores the financial difficulties of parents and children living with sickle cell disease. Methods The study adopted a qualitative approach. Twenty-seven parents were purposively selected from a sickle cell clinic in Accra, Ghana. Data collection was through an in-depth, face-to-face interview, using an interview guide based on the research objectives, and analyzed using thematic analysis. Result The findings showed that parents faced multiple financial difficulties (both direct and indirect) as they met the direct cost of medications, routine laboratory investigations, and hospital admissions. The National Health Insurance scheme does not wholly cover these costs. Families also describe more indirect costs, such as those associated with maintaining their child’s well-being alongside those connected to their caring responsibilities, including the impact of giving up work and reducing working hours. Findings highlight the most pressing challenge, including the lack of access to financial support and a more general lack of understanding of the difficulties they faced on the part of policymakers. Conclusion Supporting sickle cell parents' financial needs would improve their emotional and social well-being, enabling them to be more effective family carers