Center of Expertise in Palliative Care, Leiden University Medical Center, Leiden, The Netherlands.
Medical Psychology, Amsterdam University Medical Center, Amsterdam, The Netherlands.
PLoS One. 2024 Nov 14;19(11):e0310624. doi: 10.1371/journal.pone.0310624. eCollection 2024.
In palliative care, it is important for family caregivers to spend time with and care for the patient, and to receive (in)formal support. These elements were compromised during the Covid-19-pandemic. This study investigates what family caregivers of non-Covid-19-patients in the palliative phase shared online during the first wave of the pandemic, and what their communicative intentions were with posting online.
To investigate what family caregivers shared online, a reflexive thematic analysis was performed on online newspaper articles and posts on Twitter, Facebook and online forums. To investigate family caregivers' communicative intentions with social media posts, content analysis was conducted guided by Speech Act Theory.
In total, 412 posts and articles were included, the majority being Tweets (86.7%). Four themes were constructed: 1) 'Being out of touch', 2) 'Fear, worries and uncertainties, 3) 'Disbelief, anger and resistance', and 4) 'Understanding, acceptance and gratitude'. Family caregivers felt overwhelmed with anger, sadness and anxiety, yet some expressing milder or positive attitudes towards the new circumstances. Family caregivers mostly posted online to share their personal experiences and emotions, and to express their opinions about the restrictions.
The pandemic had distinct implications for family caregivers of non-Covid-19-patients in the palliative phase. In future similar circumstances, restrictions should be tailored to individual conditions and interventions should be in place to facilitate contact between patients, family caregivers and healthcare professionals and to support family caregivers.
在姑息治疗中，家庭成员照顾者陪伴和照顾患者并获得（正式或非正式）支持非常重要。这些元素在新冠疫情期间受到了影响。本研究调查了处于姑息阶段的非新冠患者的家庭成员照顾者在疫情第一波期间在网上分享的内容，以及他们在网上发布内容的交流意图。
为了调查家庭成员照顾者在网上分享的内容，我们对在线报纸文章和推特、脸书和在线论坛上的帖子进行了反思性主题分析。为了调查家庭成员照顾者通过社交媒体帖子的交流意图，我们根据言语行为理论进行了内容分析。
共纳入 412 篇帖子和文章，其中大多数是推文（86.7%）。构建了四个主题：1）“失去联系”，2）“恐惧、担忧和不确定性”，3）“怀疑、愤怒和抵制”，以及 4）“理解、接受和感激”。家庭成员照顾者感到愤怒、悲伤和焦虑，但也有一些人对新情况持较为温和或积极的态度。家庭成员照顾者主要在网上分享他们的个人经历和情绪，并表达他们对限制的看法。
新冠疫情对处于姑息阶段的非新冠患者的家庭成员照顾者产生了明显的影响。在未来类似的情况下，应根据个人情况调整限制措施，并应采取干预措施，以促进患者、家庭成员照顾者和医疗保健专业人员之间的联系，并支持家庭成员照顾者。
