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“我们仍在这里,我们是幸存者”:蛛网膜下腔出血患者参加多学科小组支持项目的经历

'We are still here, we are survivors': patients' experiences of attending a multidisciplinary group-based support programme following subarachnoid haemorrhage.

作者信息

Storey Alice, Sheldrick Russell, Dulhanty Louise, Zarotti Nicolò

机构信息

Department of Clinical Neuropsychology, Manchester Centre for Clinical Neurosciences, Salford Royal Hospital, Salford, UK.

Department of Neurosurgery, Manchester Centre for Clinical Neurosciences, Salford Royal Hospital, Salford, UK.

出版信息

Disabil Rehabil. 2025 Apr;47(7):1708-1716. doi: 10.1080/09638288.2024.2379024. Epub 2024 Jul 19.

DOI:10.1080/09638288.2024.2379024
PMID:39028188
Abstract

PURPOSE

People who survive a subarachnoid haemorrhage (SAH) often face enduring health challenges including physical disability, fatigue, cognitive impairments, psychological difficulties, and reduced quality of life. While group interventions have shown positive results in addressing similar issues in chronic conditions, the evidence involving SAH specifically is still sparse. This service evaluation aimed to explore SAH survivors' experiences of attending a multidisciplinary group-based support programme tailored to address unmet needs identified in previous literature, with the ultimate aim to refine future iterations of the programme and improve quality of care post-SAH.

MATERIALS AND METHODS

Semi-structured interviews were carried out with 12 individuals who attended the programme. The resulting data were analysed thematically.

RESULTS

Four overarching themes emerged from the analysis: (1) Barriers to accessing support after a SAH, (2) Factors acting as enablers of recovery, (3) Sharing lived experience to support one another, (4) Feeling connected while navigating a group format.

CONCLUSIONS

Lack of communication, fear, loneliness, and cognitive impairments can act as barriers to engagement with support, while acceptance and adjustment, holistic multidisciplinary input, and psychological support may represent successful enablers of recovery. Implications for future iterations of the programme as well as clinical rehabilitation and service development are discussed.

摘要

目的

蛛网膜下腔出血(SAH)幸存者常常面临长期的健康挑战,包括身体残疾、疲劳、认知障碍、心理问题以及生活质量下降。虽然团体干预在解决慢性病类似问题方面已显示出积极效果,但专门针对SAH的证据仍然很少。这项服务评估旨在探索SAH幸存者参加为满足先前文献中确定的未满足需求而量身定制的多学科团体支持计划的体验,最终目标是完善该计划的未来版本并提高SAH后的护理质量。

材料与方法

对12名参加该计划的个体进行了半结构化访谈。对所得数据进行了主题分析。

结果

分析得出四个总体主题:(1)SAH后获得支持的障碍,(2)促进康复的因素,(3)分享生活经历以相互支持,(4)在参与团体形式时感到有联系。

结论

沟通不畅、恐惧、孤独和认知障碍可能成为参与支持的障碍,而接受与调整、全面的多学科投入和心理支持可能是成功的康复促进因素。讨论了该计划未来版本以及临床康复和服务发展的影响。

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