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“承认自己孤独是一件很特别的事”——绝症患者孤独感的现状、影响及解决方案:一项阐释性序贯混合方法研究。

'There's something about admitting that you are lonely' - prevalence, impact and solutions to loneliness in terminal illness: An explanatory sequential multi-methods study.

机构信息

Queen's University Belfast, Belfast, UK.

Marie Curie Hospice Belfast, Belfast, UK.

出版信息

Palliat Med. 2022 Dec;36(10):1483-1492. doi: 10.1177/02692163221122269. Epub 2022 Sep 8.

Abstract

BACKGROUND

Loneliness is a prevalent societal issue and can impact on a person's physical and mental health. It is unclear how loneliness impacts on end of life experiences or how such feelings can be alleviated.

AIM

To explore the perceived prevalence, impact and possible solutions to loneliness among people who are terminally ill and their carers in Northern Ireland through the lens of health and social care professionals.

DESIGN

An explanatory multi-method study.

SETTING/PARTICIPANTS: An online survey ( = 68, response rate 30%) followed by three online focus groups with palliative and end of life care health and social care professionals ( = 14). Data were analysed using descriptive statistics and thematic analysis.

RESULTS

Loneliness was perceived by professionals as highly prevalent for people with a terminal illness (92.6%) and their carers (86.8%). Loneliness was considered a taboo subject and impacts on symptoms including pain and breathlessness and overall wellbeing at end of life. Social support was viewed as central towards alleviating feelings of loneliness and promoting connectedness at end of life. Four themes were identified: (1) the stigma of loneliness, (2) COVID-19: The loneliness pandemic (3) impact of loneliness across physical and mental health domains and (4) the power of social networks.

CONCLUSION

There is a need for greater investment for social support initiatives to tackle experiences of loneliness at end of life. These services must be co-produced with people impacted by terminal illness to ensure they meet the needs of this population.

摘要

背景

孤独是一个普遍存在的社会问题,会影响一个人的身心健康。目前尚不清楚孤独感如何影响临终体验,也不清楚如何缓解这种感觉。

目的

通过健康和社会保健专业人员的视角,探讨北爱尔兰绝症患者及其护理人员对孤独感的感知普遍性、影响和可能的解决方案。

设计

解释性多方法研究。

地点/参与者:在线调查( = 68,响应率为 30%),随后对姑息治疗和临终关怀健康和社会保健专业人员进行了三次在线焦点小组讨论( = 14)。使用描述性统计和主题分析对数据进行分析。

结果

专业人员认为绝症患者(92.6%)及其护理人员(86.8%)的孤独感非常普遍。孤独感被认为是一个禁忌话题,会影响到包括疼痛、呼吸困难和整体幸福感在内的临终症状。社会支持被视为缓解孤独感和促进临终联系的核心。确定了四个主题:(1)孤独的耻辱感,(2)COVID-19:孤独的大流行,(3)孤独对身心健康领域的影响,以及(4)社交网络的力量。

结论

需要加大对社会支持计划的投资,以解决临终时的孤独感体验。这些服务必须与受绝症影响的人共同制定,以确保满足这一人群的需求。

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