Department of Pediatrics and Child Health, Tamale Teaching Hospital, Tamale, Ghana.
School of Nursing and Midwifery, University of Ghana, Accra, Ghana.
Biomed Res Int. 2022 Jul 7;2022:3384813. doi: 10.1155/2022/3384813. eCollection 2022.
Sickle cell disease (SCD) is a serious genetic and inherited disorder. It has a physical, psychological, and socioeconomic impact on affected individuals including children and families. Globally, about 275,000 children are born annually with SCD, with an estimated 85% of these births being in Africa. In Ghana, an estimated 2% of infants that were screened were affected by SCD. Although extensive studies have been conducted on the burden on parents of children with SCD, little is known about how parents manage the disease among their children at home in our setting. This qualitative study explored the knowledge of caregivers of children with SCD, how they recognize/monitor complications of the disease and management strategies at home. An explorative qualitative study using the nonprobability purposive method was used to interview fourteen (14) caregivers of children with SCD who were recruited from the Tamale Teaching Hospital. In-depth interviews using an interview guide was used. A tape recorder was used to record each interview yielding a total of fourteen (14) audios. Audiotapes were transcribed verbatim. Data collected during these interviews were analyzed using inductive thematic content analysis. Caregivers have adequate knowledge of the signs and symptoms of SCD, its complications, and the various types their children have but fall short of knowledge on the cause of SCD. Knowledge acquired on SCD does not translate into caregivers' ability to effectively identify and monitor crises or complications at home. Home management strategies used by caregivers' were both pharmacological and nonpharmacological, and some used the combination to manage pain and monitor the health of their children. Even though the majority have used traditional medicine before, they prefer orthodox interventions which they consider more effective.
镰状细胞病(SCD)是一种严重的遗传和遗传性疾病。它对受影响的个体,包括儿童和家庭,在身体、心理和社会经济方面都有影响。在全球范围内,每年约有 275,000 名儿童出生时患有 SCD,其中估计有 85%的病例发生在非洲。在加纳,据估计,接受筛查的婴儿中有 2%受到 SCD 的影响。尽管已经对 SCD 患儿父母的负担进行了广泛的研究,但在我们的环境中,父母如何在家中管理孩子的疾病知之甚少。这项定性研究探讨了 SCD 患儿照顾者的知识,他们如何识别/监测疾病的并发症以及在家中的管理策略。采用非概率目的抽样方法进行了探索性定性研究,共采访了 14 名来自塔马利教学医院的 SCD 患儿照顾者。使用访谈指南进行深入访谈。使用录音机记录每次访谈,共产生 14 个音频。音频转录为逐字稿。使用归纳主题内容分析法分析收集的数据。照顾者对 SCD 的体征和症状、其并发症以及他们孩子的各种类型有足够的了解,但对 SCD 的病因缺乏了解。在 SCD 方面获得的知识并没有转化为照顾者在家中有效识别和监测危机或并发症的能力。照顾者使用的家庭管理策略既有药物治疗也有非药物治疗,有些则同时使用这两种方法来管理疼痛和监测孩子的健康。尽管大多数人之前都使用过传统医学,但他们更喜欢被认为更有效的正统干预措施。