McLennon Susan M, Davis Altheria, Covington Sarah, Anderson Joel G
University of Tennessee-Knoxville, Knoxville, TN, USA.
Clin Nurs Res. 2021 Jan;30(1):82-88. doi: 10.1177/1054773819865871. Epub 2019 Aug 6.
Illness blogs have been used by many individuals to describe their experiences, share knowledge, and gather support. The purpose of this study was to identify needs, concerns, and advice from the blogs of caregivers caring for a person with dementia at the end of life (EOL). A qualitative thematic analysis was performed of 192 blog postings from six dementia family caregivers during the EOL. A Google search using a systematic identification method was followed. Caregivers were females caring for mothers ( = 5) and husbands ( = 1). Themes varied by EOL stage within the contextual environment of Grief/Loss, Family, and Spirituality. Pre-death themes were Care Transitions and Quality; dying were Physical and Emotional Aspects; and post-death were Relief and Remembering. Four additional themes transitioned across stages: Decision-Making, Health Care Providers, Advice, and Caregiver Support. Findings suggest caregiver needs, concerns, and advice vary by EOL stage. Implications for tailored interventions should be considered.
许多人利用疾病博客来描述自己的经历、分享知识并寻求支持。本研究的目的是从临终关怀痴呆症患者的照料者博客中识别需求、关切事项和建议。对六位痴呆症家庭照料者在临终关怀期间发布的192篇博客文章进行了定性主题分析。采用系统识别方法在谷歌上进行搜索。照料者均为女性，其中5人照料母亲，1人照料丈夫。在悲伤/失落、家庭和精神层面的背景环境中，主题因临终阶段而异。死亡前的主题是护理过渡和质量；濒死阶段是身体和情感方面；死亡后的主题是解脱和缅怀。还有四个主题贯穿各个阶段：决策、医疗保健提供者、建议和照料者支持。研究结果表明，照料者的需求、关切事项和建议因临终阶段而异。应考虑采取针对性干预措施。
