Azimi Tara, Johnson Jeff, Campbell Sandra M, Montesanti Stephanie
School of Public Health, University of Alberta, Canada.
John W. Scott Health Sciences Library, University of Alberta, Canada.
Heliyon. 2024 Mar 12;10(6):e27539. doi: 10.1016/j.heliyon.2024.e27539. eCollection 2024 Mar 30.
Type one diabetes (T1D) in children places substantial responsibility on parents as caregivers. This study investigated caregiver burden in parents of children with T1D by exploring the financial, physical, social, spiritual, and emotional or psychological problems they experienced.
We conducted a qualitative scoping review of the databases PsycINFO, PROSPERO, OVID Medline, OVID EMBASE, Cochrane Library (CDSR and Central), EBSCO CINAHL, ProQuest Dissertations and Theses Global, and SCOPUS. Of 119 full text articles assessed for eligibility, 18 peer-reviewed qualitative studies were included. Studies were considered relevant if they focused on diabetes management and parental burden or the experience of caregiving for a child with T1D.
Using thematic analysis, six interrelated themes were identified: (a) experiencing chronic sorrow, (b) assuming responsibility for glucose highs and lows, (c) managing T1D and nighttime sleep disturbances, (d) making career sacrifices and choices to optimize T1D care, (e) navigating social experiences postdiagnosis, and (f) discovering new sources of support through online platforms.
This synthesis highlights an all-encompassing experience involved in caretaking for a child with T1D. Caregiving duties lead to a constant sense of vigilance, especially due to fear of hypoglycemic incidents. Parents commonly experience challenges with balancing work demands with T1D management, which lead to career and financial sacrifices. Their burden of care is exacerbated by a lack of reliable respite care but helped somewhat by online peer support. Future research is needed on the care burden differences between mothers and fathers and how sociodemographic factors affect how caregiver burden is experienced.
儿童1型糖尿病（T1D）使父母作为照顾者承担了重大责任。本研究通过探究患有T1D儿童的父母所经历的经济、身体、社交、精神以及情感或心理问题，调查了他们的照顾负担。
我们对PsycINFO、PROSPERO、OVID Medline、OVID EMBASE、Cochrane图书馆（CDSR和Central）、EBSCO CINAHL、ProQuest学位论文与全球博硕士论文库以及SCOPUS等数据库进行了定性范围综述。在评估是否符合纳入标准的119篇全文文章中，纳入了18篇经同行评审的定性研究。如果研究聚焦于糖尿病管理和父母负担或照顾患有T1D儿童的经历，则被认为是相关的。
通过主题分析，确定了六个相互关联的主题：（a）经历慢性悲伤，（b）对血糖高低负责，（c）管理T1D和夜间睡眠障碍，（d）为优化T1D护理做出职业牺牲和选择，（e）应对确诊后的社交经历，以及（f）通过在线平台发现新的支持来源。
本综述强调了照顾患有T1D儿童所涉及的全方位经历。照顾职责导致持续的警惕感，尤其是由于担心低血糖事件。父母在平衡工作需求与T1D管理方面通常会遇到挑战，这导致了职业和经济上的牺牲。缺乏可靠的临时护理加剧了他们的照顾负担，但在线同伴支持在一定程度上有所帮助。未来需要研究父母之间的照顾负担差异，以及社会人口因素如何影响照顾负担的体验。
