Okyere Rebecca, Ampomah Menford Owusu, Achempim-Ansong Gloria, Laari Luke, Ohene Lillian Akorfa, Atkin Karl
Faculty of Health and Allied Sciences, Department of Nursing and Midwifery, Pentecost University, Accra, Ghana.
Department of Adult Health Nursing, School of Nursing and Midwifery, University of Ghana, P.O Box LG 43, Legon, Accra, Ghana.
J Community Genet. 2024 Dec;15(6):641-652. doi: 10.1007/s12687-024-00738-3. Epub 2024 Oct 2.
Sickle Cell Disease (SCD) is a severe hemoglobin gene mutation disorder inherited from both parents. 2% 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. 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. 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. 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. .
镰状细胞病（SCD）是一种严重的血红蛋白基因突变疾病，由父母双方遗传而来。2%的加纳新生儿受SCD影响；三分之一的加纳人携带血红蛋白S基因。基督教宗教领袖可通过推广遗传咨询、为婚前夫妇进行基因型筛查以及为夫妇提供SCD产前筛查和诊断咨询，在预防SCD方面发挥作用。然而，对于加纳基督教宗教领袖对SCD的认识和看法知之甚少，本研究旨在探讨这些方面。本研究采用定性描述性设计，以探索加纳首都基督教宗教领袖对SCD的认识和看法。采用目的抽样技术从主要基督教团体旗下的教会中选取了16名参与者。参与者是根据他们在各自教会中的角色和职责挑选出来的。使用半结构化访谈指南收集数据，其中包括开放式问题，以鼓励参与者分享他们的想法和经历。访谈在私密环境中进行以确保保密性。然后使用主题分析方法对数据进行分析，该方法包括识别参与者回答中反复出现的主题和模式。该研究的结果至关重要。结果显示基督教宗教领袖对SCD有较高认识，但也存在一些误解。大多数宗教领袖知道SCD是一种遗传疾病，尽管少数人将SCD与迷信观念、不良饮食摄入和生活方式联系起来。一些人还表示SCD是血型疾病而非有缺陷的血红蛋白基因导致的疾病。他们认为SCD是沉重、具有破坏性且使人精疲力竭的，并且他们将该疾病与镰状细胞病患者（PLWSCD）及其家人的倦怠联系起来。宗教领袖与PLWSCD有良好的社交网络，包括家人、朋友、同事和会众。这些发现强调了对SCD进行强化教育的必要性，尤其是在基督教宗教领袖中。让所有利益相关者参与进来，加强公众对SCD的认识和教育，同时改善PLWSCD及其家庭可获得的管理和社会支持系统至关重要。这包括宗教机构的领导层、PLWSCD及其家庭、卫生部、加纳卫生服务局和加纳教育服务局。作为积极的利益相关者，如果宗教领袖具备有关该疾病的必要知识，他们可以在支持PLWSCD方面发挥重要作用。
