Rehabilitation Sciences Institute, Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
Department of Occupational Science and Occupational Therapy, University of Toronto, Toronto, ON, Canada.
Scand J Caring Sci. 2021 Sep;35(3):853-859. doi: 10.1111/scs.12901. Epub 2020 Aug 11.
Siblings often share in the care of parents with dementia, but little is known about how care is shared. Research suggests that in comparison with their brothers, sisters provide the majority of care to a parent with dementia and this can contribute to the sisters experiencing poorer health outcomes. There is limited knowledge about how to guide siblings who share in the care of a parent with dementia.
Our qualitative descriptive study sought to explore the experiences of adult daughters sharing care responsibilities with their siblings. The study protocol was approved by institutional (University of Toronto and Baycrest Health Sciences) research ethics boards.
MATERIALS & METHODS: Thirty-four daughters participated in an online qualitative survey. Data were analysed using Braun and Clarke's (Qualitative Research in Psychology, 3, 2006, 77) 6-step process.
In an overarching theme, daughters expected shared caregiving with their siblings. They conceptualised this to be a practice of being equitable in dividing care responsibilities and fulfilling a supportive role for a parent with dementia; however, this expectation was not met by most daughters. Two subthemes were identified: (a) factors facilitating/constraining shared caregiving and (b) consequences of sharing care. The findings highlight the importance of understanding shared caregiving among siblings when caring for a parent with dementia.
Results from this study suggest that although shared caregiving is often the goal, factors such as gender roles, geographical proximity, caregiver expertise/skill set and work schedules affect caregivers' abilities to share caregiving. These factors affected whether daughters viewed the caregiving situation as being shared equitably or inequitably, and this led to feelings of acceptance or resentment of their sibling's contribution to the care of their parent.
Healthcare providers can utilise these findings to better support adult-child caregivers negotiating care with their siblings.
兄弟姐妹经常共同照顾患有痴呆症的父母，但对于照顾是如何分担的知之甚少。研究表明，与兄弟相比，姐妹为患有痴呆症的父母提供了大部分照顾，这可能导致姐妹的健康状况更差。关于如何指导共同照顾患有痴呆症父母的兄弟姐妹，我们知之甚少。
我们的定性描述性研究旨在探讨成年女儿与兄弟姐妹共同分担照顾责任的经验。该研究方案已获得机构（多伦多大学和 Baycrest 健康科学）研究伦理委员会的批准。
34 名女儿参加了一项在线定性调查。采用 Braun 和 Clarke（《心理学定性研究》，3 卷，2006 年，第 77 页）的 6 步分析法分析数据。
在一个总体主题中，女儿们期望与兄弟姐妹共同承担照顾责任。她们将其视为在分配照顾责任和为患有痴呆症的父母提供支持角色方面公平分担的做法；然而，大多数女儿的期望并未得到满足。确定了两个子主题：（a）促进/限制共同照顾的因素和（b）共同照顾的后果。研究结果强调了在照顾患有痴呆症的父母时理解兄弟姐妹共同照顾的重要性。
本研究结果表明，尽管共同照顾通常是目标，但性别角色、地理位置、照顾者专业知识/技能以及工作安排等因素会影响照顾者共同照顾的能力。这些因素影响了女儿们如何看待照顾情况是否公平分担，从而导致她们对兄弟姐妹为照顾父母所做的贡献感到接受或怨恨。
医疗保健提供者可以利用这些发现，更好地支持成年子女与兄弟姐妹协商照顾事宜。
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