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本文引用的文献

1
Caregiver Perception of Sickle Cell Disease Stigma in Ghana: An Ecological Approach.加纳看护者对镰状细胞病污名的认知:一种生态方法。
J Pediatr Health Care. 2021 Jan-Feb;35(1):84-90. doi: 10.1016/j.pedhc.2020.08.002. Epub 2020 Sep 1.
2
Saturation in qualitative research: exploring its conceptualization and operationalization.定性研究中的饱和度:探索其概念化与操作化
Qual Quant. 2018;52(4):1893-1907. doi: 10.1007/s11135-017-0574-8. Epub 2017 Sep 14.
3
Sickle cell disease.镰状细胞病。
Nat Rev Dis Primers. 2018 Mar 15;4:18010. doi: 10.1038/nrdp.2018.10.
4
Management of Sickle Cell Disease: Recommendations from the 2014 Expert Panel Report.镰状细胞病的管理:2014年专家小组报告的建议
Am Fam Physician. 2015 Dec 15;92(12):1069-76.
5
Newborn Screening for Sickle Cell Disease in Liberia: A Pilot Study.利比里亚镰状细胞病新生儿筛查:一项试点研究。
Pediatr Blood Cancer. 2016 Apr;63(4):671-6. doi: 10.1002/pbc.25875. Epub 2016 Jan 6.
6
How sickle cell disease patients experience, understand and explain their pain: An Interpretative Phenomenological Analysis study.镰状细胞病患者如何体验、理解和解释他们的疼痛:一项解释现象学分析研究。
Br J Health Psychol. 2016 Feb;21(1):190-203. doi: 10.1111/bjhp.12157. Epub 2015 Sep 2.
7
Management of sickle cell disease: summary of the 2014 evidence-based report by expert panel members.镰状细胞病的管理:专家小组成员 2014 年循证报告的总结。
JAMA. 2014 Sep 10;312(10):1033-48. doi: 10.1001/jama.2014.10517.
8
Using formative research to develop a counselor training program for newborn screening in Ghana.利用形成性研究为加纳的新生儿筛查制定一项咨询师培训计划。
J Genet Couns. 2015 Apr;24(2):267-77. doi: 10.1007/s10897-014-9759-7. Epub 2014 Sep 7.
9
Parental problem-solving abilities and the association of sickle cell disease complications with health-related quality of life for school-age children.父母的问题解决能力以及镰状细胞病并发症与学龄儿童健康相关生活质量的关联。
J Clin Psychol Med Settings. 2014 Mar;21(1):56-65. doi: 10.1007/s10880-013-9379-7.
10
Global burden of sickle cell anaemia in children under five, 2010-2050: modelling based on demographics, excess mortality, and interventions.2010-2050 年期间五岁以下儿童镰状细胞性贫血的全球负担:基于人口统计学、超额死亡率和干预措施的建模研究。
PLoS Med. 2013;10(7):e1001484. doi: 10.1371/journal.pmed.1001484. Epub 2013 Jul 16.

儿童镰状细胞病:加纳北部一家三级医疗机构护理人员的知识和家庭管理策略。

Sickle Cell Disease in Children: Knowledge and Home-Based Management Strategies among Caregivers at a Tertiary Facility in Northern Ghana.

机构信息

Department of Pediatrics and Child Health, Tamale Teaching Hospital, Tamale, Ghana.

School of Nursing and Midwifery, University of Ghana, Accra, Ghana.

出版信息

Biomed Res Int. 2022 Jul 7;2022:3384813. doi: 10.1155/2022/3384813. eCollection 2022.

DOI:10.1155/2022/3384813
PMID:35845932
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9283026/
Abstract

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.

摘要

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。