脑瘫成人、其辅助人员和服务提供者对医疗服务的体验。

IF 3.8 2区 医学 Q1 CLINICAL NEUROLOGY
Manjula Manikandan, Claire Kerr, Jennifer Fortune, Michael Walsh, Jennifer Ryan, Aisling Walsh
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引用次数: 0

摘要

目的:从患有脑瘫(CP)的成年人、他们的支持者和服务提供者的角度,探讨爱尔兰患有脑瘫(CP)的成年人对医疗服务的体验:方法:采用定性描述研究设计。在 2021 年 3 月至 8 月期间,对患有脑瘫的成年人、支持他们的人和医疗专业人员进行了深入的半结构式访谈。研究采用主题分析法对数据进行评估:21 名成年脊髓灰质炎患者、7 名支持者(家庭照顾者、配偶或伴侣或朋友)和 15 名服务提供者参与了研究。从数据中确定了五个主题:(1) 获得成人服务的挑战;(2) 对 CP 的认识和理解;(3) 辅助人员的角色和护理负担;(4) 成人服务中的沟通和互动;以及 (5) 医疗系统的挑战:结论:爱尔兰的成年 CP 患者在获得所需的医疗服务方面面临多重挑战。据报告,服务不足,资源有限,对 CP 的了解也有限。与会者强调需要采取系统层面的干预措施,包括加强对医疗专业人员的培训,以有效满足患有脑瘫的成年人的需求。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Experiences of health services for adults with cerebral palsy, their support people, and service providers.

Aim: To explore the experiences of health services among adults with cerebral palsy (CP) in Ireland, from the perspectives of adults with CP, their support people, and service providers.

Method: A qualitative descriptive study design was used. In-depth semi-structured interviews were conducted between March and August 2021 with adults with CP, people who supported them, and health professionals. Thematic analysis was used to evaluate the data.

Results: Twenty-one adults with CP, seven support people (family carer[s], spouse or partner, or friend), and 15 service providers participated in the study. Adults had a mean age of 38 years 5 months (range 22-58 years) and were classified in Gross Motor Function Classification System levels I to V. Five themes were identified from the data: (1) access challenges in adult services; (2) knowledge and understanding of CP; (3) support people's role and care burden; (4) communication and interaction in adult services; and (5) health system challenges.

Conclusion: Adults with CP in Ireland face multiple challenges accessing the health services they need. Services were reported to be inadequate, with limited resources and understanding of CP. Participants highlighted a need for system-level interventions, including enhanced training for health professionals to effectively meet the needs of adults with CP.

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来源期刊
CiteScore
7.80
自引率
13.20%
发文量
338
审稿时长
3-6 weeks
期刊介绍: Wiley-Blackwell is pleased to publish Developmental Medicine & Child Neurology (DMCN), a Mac Keith Press publication and official journal of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) and the British Paediatric Neurology Association (BPNA). For over 50 years, DMCN has defined the field of paediatric neurology and neurodisability and is one of the world’s leading journals in the whole field of paediatrics. DMCN disseminates a range of information worldwide to improve the lives of disabled children and their families. The high quality of published articles is maintained by expert review, including independent statistical assessment, before acceptance.
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