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脑瘫女性:一项关于其性与生殖健康教育和服务体验的定性研究。

Women with cerebral palsy: A qualitative study about their experiences with sexual and reproductive health education and services.

机构信息

University of Virginia Teen and Young Adult Health Center, Department of Pediatrics, University of Virginia School of Medicine, Charlottesville, VA, USA.

Cerebral Palsy Foundation, New York, NY, USA.

出版信息

J Pediatr Rehabil Med. 2021;14(2):285-293. doi: 10.3233/PRM-210020.

Abstract

PURPOSE

To explore the recalled experiences of women with CP regarding sexual health education and services they received.

METHODS

Semi-structured interviews and focus groups were conducted at four academic tertiary hospitals with 33 adult women with CP. Templates were used to ask about four key content domains: appointment planning (including planning for a gynecologic exam), accessibility of services, experiences with providers, and recommendations for improvement. Sessions were transcribed verbatim and analyzed to generate a coding dictionary. Blinded coding was carried out for each transcript, with duplicate coding used to confirm identified themes. Iterative analysis was used to identify and consolidate coding and key themes.

RESULTS

Similar barriers were discussed at the four sites, including lack of accessible exam tables, hospital staff unfamiliar with physical disabilities, and assumptions that women with CP are not sexually active. Many described the sexual education they received as brief, omitted, or mistimed. Self-advocacy was crucial, and recommended strategies ranged from pre-gynecologic exam medication to visit checklists.

CONCLUSION

Reproductive health education for young women with CP is frequently inadequate. Medical professionals lack relevant knowledge and awareness; medical facilities lack necessary infrastructure. Recommendations for improvements are made.

摘要

目的

探讨成年脑瘫女性对性健康教育培训和服务的 recalled 经验。

方法

在四家学术型三级医院,对 33 名成年脑瘫女性进行了半结构化访谈和焦点小组讨论。模板用于询问四个关键内容领域:预约计划(包括妇科检查计划)、服务的可及性、与提供者的经历,以及改进建议。会议记录逐字转录并进行分析,以生成编码字典。对每个转录本进行盲法编码,并使用重复编码来确认已确定的主题。迭代分析用于识别和整合编码和关键主题。

结果

四个地点讨论了类似的障碍,包括缺乏无障碍检查台、医院工作人员不熟悉身体残疾,以及假设脑瘫女性没有性行为。许多人描述他们接受的性教育简短、遗漏或不合时宜。自我倡导至关重要,建议的策略范围从妇科检查前的药物治疗到访问检查表。

结论

年轻脑瘫女性的生殖健康教育经常不足。医疗专业人员缺乏相关知识和意识;医疗机构缺乏必要的基础设施。提出了改进建议。

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