Azimi Tara, A Wozniak Lisa, T Oster Richard, Johnson Jeff, Montesanti Stephanie
School of Public Health, University of Alberta, 3-266 Edmonton Clinic Health Academy, 11405-87 Ave, Edmonton, AB, T6G 1C9, Canada.
University of Alberta, Edmonton, Canada.
BMC Public Health. 2025 May 5;25(1):1655. doi: 10.1186/s12889-025-22457-1.
Canada has one of the highest rates of Type 1 diabetes in children. Management of their diabetes and prevention of poor health outcomes often falls on mothers who are often the primary caregiver. The caregiving demands can result in substantial responsibility and stress. Mothers report career sacrifices, sleep deprivation, stress, grief, anxiety, and low mood. While globally Canada has a high rate of type 1 diabetes, studies on the caregiving experience within a Canadian context have not been conducted. This study explored the experiences of mothers of children with type 1 diabetes in northern Alberta, Canada.
Utilizing a qualitative descriptive approach, we interviewed 16 mothers (average age = 37.1 ± 6) with children with type 1 diabetes who were under the age of 18. We also drew upon a caregiver engagement in research approach to create a Community Advisory Committee of three mothers of children with diabetes. Advisory members collaborated with us and offered invaluable insight and feedback throughout the study.
Using reflexive thematic analysis, six interrelated themes were identified: (a) "I am the organ": a sense of constant vigilance, (b) accepting a new normal, (c) grief underlying a rollercoaster of emotions, (d) caregiving as an isolating experience, (e) the continuous glucose monitor is a champion, and (f) finding the positives. Mothers face constant vigilance and anxiety, often feeling like their child's "organ" for survival. They view caregiving as an isolating experience with limited understanding and assumptions from people without children with type 1 diabetes. Grief persists several years post diagnosis, intertwined with concerns and worries for the health and future of their children. New routines revolved around caretaking duties result in the acceptance of lifestyle changes and shifts in priorities.
Caring for a child with type 1 diabetes presents many stressors for mothers. Over time, mothers gain confidence about their abilities as caregivers. They find relief in online networks and access to continuous glucose monitors, which alleviate some anxiety and sleep deprivation but also present challenges. Our findings highlight the importance of improving access to affordable technology, psychological support, and respite care to improve loss of personal time and the need for constant vigilance.
加拿大是儿童1型糖尿病发病率最高的国家之一。对他们糖尿病的管理以及预防健康状况不佳往往落在母亲身上，母亲通常是主要照顾者。照顾需求可能导致重大责任和压力。母亲们报告了职业牺牲、睡眠不足、压力、悲伤、焦虑和情绪低落。虽然在全球范围内加拿大1型糖尿病发病率很高，但尚未开展关于加拿大背景下照顾经历的研究。本研究探讨了加拿大艾伯塔省北部1型糖尿病患儿母亲的经历。
采用定性描述方法，我们采访了16位母亲（平均年龄 = 37.1 ± 6岁），她们的孩子患有1型糖尿病且年龄在18岁以下。我们还采用了照顾者参与研究的方法，组建了一个由三位糖尿病患儿母亲组成的社区咨询委员会。咨询成员与我们合作，并在整个研究过程中提供了宝贵的见解和反馈。
通过反思性主题分析，确定了六个相互关联的主题：（a）“我是器官”：持续警惕感；（b）接受新常态；（c）情绪过山车背后的悲伤；（d）照顾是一种孤立的经历；（e）持续葡萄糖监测仪是个好帮手；（f）找到积极面。母亲们面临持续的警惕和焦虑，常常觉得自己是孩子生存的“器官”。她们认为照顾是一种孤立的经历，来自没有1型糖尿病患儿的人的理解和假设有限。诊断后数年悲伤持续存在，与对孩子健康和未来的担忧交织在一起。围绕照顾职责形成的新日常导致对生活方式改变的接受和优先事项的转变。
照顾患有1型糖尿病的孩子给母亲带来了许多压力源。随着时间的推移，母亲们对自己作为照顾者的能力获得了信心。她们在在线网络以及使用持续葡萄糖监测仪中得到缓解，这减轻了一些焦虑和睡眠不足，但也带来了挑战。我们的研究结果强调了改善获得负担得起的技术、心理支持和临时护理的机会的重要性，以改善个人时间的损失以及持续警惕的必要性。
