Centre for Population Health Sciences, Usher Institute, University of Edinburgh, Edinburgh, UK.
Wellcome Trust - MRC Medical Research Institute of Metabolic Science, University of Cambridge, Cambridge, UK.
BMC Pediatr. 2021 Apr 4;21(1):160. doi: 10.1186/s12887-021-02569-4.
To synthesise the qualitative evidence on parents' experiences of caring for a child aged ≤8 years with type 1 diabetes to identify: the challenges they encounter; their views about support received; ways in which support could be improved; and, directions for future research.
We searched Medline, EMBASE, CINAHL, PsycINFO and Web of Science databases to identify qualitative studies reporting parents' views and experiences of caring for a child with type 1 diabetes aged ≤8 years. Key analytical themes were identified using thematic synthesis.
Fourteen studies were included. The synthesis resulted in the generation of two overarching themes. Monopolisation of life describes the all-encompassing impact diabetes could have on parents due to the constant worry they experienced and the perceived need for vigilance. It describes how parents' caring responsibilities could affect their wellbeing, relationships and finances, and how a lack of trusted sources of childcare and a desire to enable a 'normal' childhood constrained personal choices and activities. However, use of diabetes technologies could lessen some of these burdens. Experiences of professional and informal support describes how encounters with healthcare professionals, while generally perceived as helpful, could lead to frustration and anxiety, and how connecting with other parents caring for a child with type 1 diabetes provided valued emotional and practical support.
This synthesis outlines the challenges parents encounter, their views about support received and ways in which support might be improved. It also highlights significant limitations in the current literature and points to important areas for future research, including how sociodemographic factors and use of newer diabetes technologies influence parents' diabetes management practices and experiences. PROSPERO: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42019128710.
综合分析父母照顾≤8 岁 1 型糖尿病儿童的经验，以确定：他们面临的挑战；他们对所获得支持的看法；可以改进支持的方式；以及未来研究的方向。
我们检索了 Medline、EMBASE、CINAHL、PsycINFO 和 Web of Science 数据库，以确定报告父母照顾≤8 岁 1 型糖尿病儿童的观点和经验的定性研究。使用主题综合法确定了关键分析主题。
纳入了 14 项研究。综合分析生成了两个总体主题。生活的垄断描述了由于父母持续担忧和对警惕性的感知需求，糖尿病可能对父母产生的全面影响。它描述了父母的照顾责任如何影响他们的幸福、关系和财务状况，以及缺乏可信的儿童保育来源和渴望实现“正常”童年如何限制个人选择和活动。然而，使用糖尿病技术可以减轻一些负担。专业和非正式支持的体验描述了与医疗保健专业人员的接触，虽然普遍被认为是有帮助的，但也可能导致沮丧和焦虑，以及与照顾 1 型糖尿病儿童的其他父母建立联系如何提供有价值的情感和实际支持。
本次综合分析概述了父母面临的挑战、他们对所获得支持的看法以及支持可能改进的方式。它还突出了当前文献的重大局限性，并指出了未来研究的重要领域，包括社会人口因素和使用更新的糖尿病技术如何影响父母的糖尿病管理实践和经验。PROSPERO：https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42019128710。
