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照顾脑瘫患儿的经历:元分析。

Caregivers' experiences of having a child with cerebral palsy. A meta-synthesis.

机构信息

Department of Nursing, College of Medicine, National Cheng Kung University, No1 University Road, Tainan 70101, Taiwan; Department of Nursing, Eswatini Christian Medical University, Lomkiri Portion 69 of Farm 73, Zone 4, Mbabane, Hhohho, Swaziland.

Professor, Institute of Allied Health Sciences & Department of Nursing, College of Medicine, National Cheng Kung University, No 1 University Road, Tainan 70101, Taiwan; Director, Department of Nursing, National Cheng Kung University Hospital, College of Medicine, National Cheng Kung University, Tainan, Taiwan.

出版信息

J Pediatr Nurs. 2023 Nov-Dec;73:157-168. doi: 10.1016/j.pedn.2023.08.026. Epub 2023 Sep 12.

Abstract

AIM

To synthesize qualitative research findings of caregiver experiences and challenges in caring for and raising a child with cerebral palsy.

DESIGN

A systematic review and meta-synthesis.

METHODS

Four electronic databases: CINAHL, Embase, OVID Medline, and Cochrane, were systematically searched for qualitative research papers published before December 2022. Two independent reviewers assessed eligibility and further appraised the quality of methodology using the Critical Appraisal Skills Program (CASP) tool for qualitative research. A content thematic analysis approach was used to synthesize the qualitative research findings, construct core subthemes, and synthesize themes.

RESULTS

Sixty-seven findings were extracted from the 12 included studies. The findings were grouped into eleven sub-themes and then into five synthesized themes. The synthesized themes are 1. Need for convenient healthcare facilities, therapeutic services, and accessible public places, 2. Need for healthcare information and financial aid, 3. Psychological, and physical constraints, 4. Societal rejection and stigma, and 5. Overwhelming caring burden.

CONCLUSION

Caregivers face many challenges in adjusting their lifestyles to meet the needs of the child with cerebral palsy. Some adjustments reported included giving up full-time jobs and businesses to be full-time caregivers, giving up leisure activities, and confinement to one place.

摘要

目的

综合照顾脑瘫患儿的 caregiver 的经验和挑战的定性研究结果。

设计

系统回顾和元综合。

方法

系统检索了四个电子数据库:CINAHL、Embase、OVID Medline 和 Cochrane,以获取截至 2022 年 12 月发表的定性研究论文。两名独立审查员使用定性研究的批判性评估技能计划 (CASP) 工具评估合格性,并进一步评估方法学质量。采用内容主题分析方法综合定性研究结果,构建核心子主题,并综合主题。

结果

从 12 项纳入的研究中提取了 67 项发现。这些发现被分为十一个子主题,然后再分为五个综合主题。综合主题是:1. 需要方便的医疗设施、治疗服务和无障碍公共场所,2. 需要医疗信息和经济援助,3. 心理和身体限制,4. 社会排斥和耻辱感,5. 难以承受的照顾负担。

结论

照顾者在调整生活方式以满足脑瘫患儿的需求方面面临许多挑战。报告的一些调整包括放弃全职工作和生意成为全职照顾者、放弃休闲活动和被困在一个地方。

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