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巴林1型糖尿病患儿父母的照料负担:一项定性研究

Caregiver Burden in Parents of Children With Type 1 Diabetes in Bahrain: A Qualitative Study.

作者信息

AlSaleh Aseel, Ahmed Jamil, Alsenani Intisar, Alhousni Wijdaan, AalAbdulsalam Riham

机构信息

Department of Family and Community Medicine, College of Medicine and Health Sciences, Arabian Gulf University, Manama, Kingdom of Bahrain.

出版信息

Sci Diabetes Self Manag Care. 2025 Jun;51(3):309-322. doi: 10.1177/26350106251326519. Epub 2025 Mar 24.

DOI:10.1177/26350106251326519
PMID:40123443
Abstract

PurposeThe purpose of the study was to explore caregiver burden among parents of children with type 1 diabetes (T1D) in Bahrain, focusing on emotional, physical, and social demands.MethodsA qualitative research design using phenomenological approach was used to conduct in-depth interviews with 14 parents of children and adolescents with T1D, selected using purposive sampling. Data were collected through in-depth interviews based on Chou's framework of caregiver burden, covering financial, physical, social, spiritual, and emotional stressors. Interviews were conducted in Arabic, audio-recorded, and transcribed. Thematic analysis was performed using Taguette, with themes validated through peer debriefing and member checking.ResultsFour key themes emerged: managing daily health needs, adapting to a new reality, balancing work and personal life, and the need for caregiver support. Parents reported significant emotional-, physical-, social-, and cost-related demands. Managing daily health needs was accompanied by constant monitoring and insulin administration. Adapting to a new reality required lifestyle adjustments. Balancing work and personal life were challenging due to caregiving duties.ConclusionThe findings highlight the substantial burden faced by parents of children and adolescents with T1D in Bahrain. Parents expressed a need for appropriate support systems addressing both their children's medical needs and their own well-being, which can improve the quality of life for both caregivers and their children.

摘要

目的

本研究的目的是探讨巴林1型糖尿病(T1D)患儿父母的照顾负担,重点关注情感、身体和社会需求。

方法

采用质性研究设计,运用现象学方法,对14名T1D患儿及青少年的父母进行深入访谈,采用目的抽样法进行选择。基于Chou的照顾负担框架,通过深入访谈收集数据,涵盖经济、身体、社会、精神和情感压力源。访谈以阿拉伯语进行,录音并转录。使用Taguette进行主题分析,通过同行汇报和成员核对验证主题。

结果

出现了四个关键主题

管理日常健康需求、适应新现实、平衡工作和个人生活以及对照顾者支持的需求。父母报告了重大的情感、身体、社会和成本相关需求。管理日常健康需求伴随着持续监测和胰岛素注射。适应新现实需要调整生活方式。由于照顾职责,平衡工作和个人生活具有挑战性。

结论

研究结果凸显了巴林T1D患儿及青少年父母面临的巨大负担。父母表示需要适当的支持系统,以满足孩子的医疗需求和自身的幸福,这可以提高照顾者及其孩子的生活质量。

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