Trucco Ana Paula, Mioshi Eneida, Kishita Naoko, Barry Caroline, Backhouse Tamara
School of Health Sciences, University of East Anglia, Norwich, UK.
Department of Palliative Care, Norfolk and Norwich University Hospital Foundation Trust, Norwich, UK.
Palliat Support Care. 2024 Oct;22(5):1191-1197. doi: 10.1017/S147895152300158X.
Family carers of people living with motor neurone disease (MND) face continuous changes and losses during the progression of the disease, impacting on their emotional wellbeing. Carers' emotions might affect their engagement in everyday activities and their caring role. However, how carers manage their emotions and which strategies they identify as useful to cope with them while caring is under researched.
To identify the emotional experiences and coping strategies of MND family carers while caring the person living with MND.
We conducted 14 semi-structured interviews with family carers currently supporting people living with MND living in the UK. Interviews were audio/video recorded and professionally transcribed verbatim. We analyzed data inductively within an interpretive descriptive approach, using reflexive thematic analysis.
Three key themes were generated from the analysis. reflected the devastating impact the diagnosis had on carers, characterized by initial overwhelming emotions. captured how carers experienced everyday changes and losses and how they gradually adjusted to the situation by identifying coping strategies to be able to manage arising emotions. encompassed how carers used individual strategies they had tried before and had worked for them to cope emotionally with the continuous changes and losses while preserving their emotional wellbeing.
Our findings suggest that carers of people living with MND embark on an emotional journey from the diagnosis of the disease. As the disease progresses, carers adopt coping strategies that best work for them to manage their emotions (e.g., living day by day and seeking support). Understanding the key strategies used to support emotional coping during the caring journey and how carers re-construct their emotional life around MND could help inform future practice and research to better support carers of this population.
运动神经元病（MND）患者的家庭护理人员在疾病进展过程中面临持续的变化和损失，这对他们的情绪健康产生影响。护理人员的情绪可能会影响他们参与日常活动以及履行护理职责的情况。然而，护理人员如何管理自己的情绪以及他们认为在护理过程中哪些策略有助于应对情绪，这方面的研究还比较少。
确定MND家庭护理人员在照顾MND患者期间的情绪体验和应对策略。
我们对目前在英国为MND患者提供支持的家庭护理人员进行了14次半结构化访谈。访谈进行了音频/视频录制，并由专业人员逐字转录。我们采用解释性描述方法，通过反思性主题分析对数据进行归纳分析。
分析产生了三个关键主题。 反映了诊断对护理人员的毁灭性影响，其特点是最初情绪极为强烈。 描述了护理人员如何经历日常的变化和损失，以及他们如何通过确定应对策略来逐渐适应这种情况，从而能够管理出现的情绪。 包括护理人员如何运用他们以前尝试过且对自己有效的个人策略，在保持情绪健康的同时，从情感上应对持续的变化和损失。
我们的研究结果表明，MND患者的护理人员从疾病诊断开始就踏上了一段情绪之旅。随着疾病的进展，护理人员采用最适合自己的应对策略来管理情绪（例如，一天天地过日子并寻求支持）。了解在护理过程中用于支持情绪应对的关键策略，以及护理人员如何围绕MND重新构建他们的情感生活，有助于为未来的实践和研究提供信息，以便更好地支持这一人群的护理人员。
