College of Medicine and Medical Sciences, Arabian Gulf University, Manama, Kingdom of Bahrain.
Department of Family and Community Medicine, College of Medicine and Medical Sciences, Arabian Gulf University, Manama, Kingdom of Bahrain.
PLoS One. 2022 Apr 7;17(4):e0266501. doi: 10.1371/journal.pone.0266501. eCollection 2022.
This study aimed to determine caregivers' perspectives on difficulties encountered while seeking care for adolescents with sickle cell disease (SCD). It explored the social, emotional, and financial impact of caring for an adolescent with SCD on their caregivers.
A mixed-method study in a major tertiary care hospital in Bahrain was conducted between June and August 2019. Cross-sectional questionnaires and thematic analyzed interviews were performed with 101 and 18 Bahraini caregivers of adolescents with SCD (aged 10-18 years), respectively.
Lack of parking lots (52.5%) and traffic jams (27%) were identified as the most common challenges in seeking hospital care for adolescents with SCD. These difficulties, including prolonged waiting in the emergency room, discouraged more than half of the caregivers who preferred to seek care from smaller healthcare centers. Most caregivers reported receiving a high degree of support from their families, who emotionally encouraged them to facilitate patient care (73.3%). Therefore, their relationships with their friends, colleagues, and relatives were not significantly affected. Catastrophic health expenditure occurred in 14.8% of caregivers. Qualitative themes that emerged were A) the intricacy of caring for adolescents with SCD, B) dissatisfaction with hospital facilities, and C) insufficient healthcare services, wherein caregivers reported adolescents' experiences with services during hospital visits. Subthemes for the intricacy of caring for adolescents with SCD were 1) the psychological tragedy, summarizing the initial caregivers' feelings after the confirmed diagnosis, 2) caregiving hardships that described the caregivers' emotional and health burden while accepting and adjusting to the disease, and 3) the cost of care on families, which highlights the financial burden of the disease on families.
The caregivers of adolescents with SCD experienced several overwhelming challenges, including problems in accessing healthcare and receiving medical services, in addition to influences on the emotional, financial, and social aspects of their lives.
本研究旨在确定照料者在为患有镰状细胞病（SCD）的青少年寻求护理时所遇到的困难。它探讨了照顾患有 SCD 的青少年对其照料者的社会、情感和经济影响。
2019 年 6 月至 8 月，在巴林的一家主要的三级护理医院进行了一项混合方法研究。分别对 101 名和 18 名患有 SCD 的青少年（年龄在 10-18 岁）的巴林照料者进行了横断面问卷调查和主题分析访谈。
找不到停车位（52.5%）和交通堵塞（27%）被确定为为患有 SCD 的青少年寻求医院护理时最常见的挑战。这些困难，包括在急诊室长时间等待，使超过一半的照料者望而却步，他们更愿意从小型医疗中心寻求护理。大多数照料者报告说，他们的家人给予了他们高度的支持，家人从情感上鼓励他们为患者提供护理（73.3%）。因此，他们与朋友、同事和亲戚的关系并没有受到很大影响。14.8%的照料者发生灾难性的医疗支出。出现的定性主题是 A）照顾患有 SCD 的青少年的复杂性，B）对医院设施的不满，和 C）医疗服务不足，其中照料者报告了青少年在医院就诊期间对服务的体验。照顾患有 SCD 的青少年的复杂性的子主题是 1）心理悲剧，总结了确诊后最初照料者的感受，2）照顾困难，描述了照料者在接受和适应疾病时的情感和健康负担，和 3）家庭的护理成本，突出了疾病对家庭的经济负担。
患有 SCD 的青少年的照料者经历了一些令人难以承受的挑战，包括在获得医疗保健和接受医疗服务方面的问题，以及对他们生活的情感、经济和社会方面的影响。
