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“你在听吗?”:在新冠疫情期间,处于姑息治疗阶段的患者的家庭照护者在网上分享的经验。

"Are you listening?": Experiences shared online by family caregivers of patients in the palliative phase during the Covid-19-pandemic.

机构信息

Center of Expertise in Palliative Care, Leiden University Medical Center, Leiden, The Netherlands.

Medical Psychology, Amsterdam University Medical Center, Amsterdam, The Netherlands.

出版信息

PLoS One. 2024 Nov 14;19(11):e0310624. doi: 10.1371/journal.pone.0310624. eCollection 2024.


DOI:10.1371/journal.pone.0310624
PMID:39541320
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11563413/
Abstract

OBJECTIVES: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

摘要

目的: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。

方法: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。

结果: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。

结论: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。

相似文献

[1]
"Are you listening?": Experiences shared online by family caregivers of patients in the palliative phase during the Covid-19-pandemic.

PLoS One. 2024

[2]
Investigating Social Media to Evaluate Emergency Medicine Physicians' Emotional Well-being During COVID-19.

JAMA Netw Open. 2023-5-1

[3]
Emotions of COVID-19: Content Analysis of Self-Reported Information Using Artificial Intelligence.

J Med Internet Res. 2021-4-30

[4]
Tweets by People With Arthritis During the COVID-19 Pandemic: Content and Sentiment Analysis.

J Med Internet Res. 2020-12-3

[5]
Exploring informal caregivers' well-being during COVID-19 through online discussion forums.

Scand J Caring Sci. 2024-3

[6]
The significance of the COVID-19 pandemic for family caregivers of non-COVID-19 patients in need of specialized palliative care at home: a qualitative study.

Int J Qual Stud Health Well-being. 2022-12

[7]
Health Professionals' Perspectives of the Role of Palliative Care During COVID-19: Content Analysis of Articles and Blogs Posted on Twitter.

Am J Hosp Palliat Care. 2022-4

[8]
Perceptions of who is in the healthcare team? A content analysis of social media posts during COVID-19 pandemic.

J Interprof Care. 2020-9-22

[9]
Challenges Experienced by Italian Nursing Home Staff in End-of-Life Conversations with Family Caregivers during COVID-19 Pandemic: A Qualitative Descriptive Study.

Int J Environ Res Public Health. 2022-2-22

[10]
Hospice palliative care professionals' opinions, emotions, skills and ethical reflections during the first phase of the COVID-19 pandemic.

Int J Palliat Nurs. 2022-1-2

本文引用的文献

[1]
Relatives' grief at three moments after death of a loved one during COVID-19 pandemic (the CO-LIVE study).

Death Stud. 2024

[2]
Support for relatives in the intensive care unit: lessons from a cross-sectional multicentre cohort study during the COVID-19 pandemic.

BMC Health Serv Res. 2023-7-18

[3]
Caregivers' experiences of caring for non-COVID-19 patients during the pandemic: A qualitative systematic review.

Patient Educ Couns. 2023-10

[4]
Improving Access to Advance Care Planning in Current and Future Public Health Emergencies: International Challenges and Recommendations.

J Palliat Med. 2023-4

[5]
Family caregivers as essential partners in care: examining the impacts of restrictive acute care visiting policies during the COVID-19 pandemic in Canada.

BMC Health Serv Res. 2023-3-31

[6]
Patient safety and hospital visiting at the end of life during COVID-19 restrictions in Aotearoa New Zealand: a qualitative study.

BMJ Qual Saf. 2023-12

[7]
Is thematic analysis used well in health psychology? A critical review of published research, with recommendations for quality practice and reporting.

Health Psychol Rev. 2023-12

[8]
The Effect of the COVID-19 Pandemic on Grief Experiences of Bereaved Relatives: An Overview Review.

Omega (Westport). 2025-6

[9]
The Experiences of Informal Carers during the COVID-19 Pandemic: A Qualitative Systematic Review.

Int J Environ Res Public Health. 2022-10-18

[10]
Caregivers' Concerns About Assisted Living Residents' Mental Health During the COVID-19 Pandemic: A Cross-Sectional Survey Study.

J Fam Nurs. 2023-2

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