Population Health Sciences Institute, Newcastle University, Newcastle University Centre for Cancer, Newcastle upon Tyne, England.
Faculty of Medical Sciences, Newcastle University, Newcastle upon Tyne, England.
Qual Health Res. 2024 Feb;34(3):227-238. doi: 10.1177/10497323231204740. Epub 2023 Nov 15.
Those closest to people with lower-grade gliomas (LGGs) often assume the role of informal caregiver (IC). The additional responsibilities mean ICs of people with cancer can experience adverse impacts on their own lives. We explored the emotional impact of informal caregiving for people with LGGs. This was a descriptive qualitative study within the multi-method Ways Ahead project. We conducted semi-structured interviews with individuals from the United Kingdom, who currently, or in the past 5 years, informally cared for someone with an LGG. Interviews encompassed experiences of emotional impact as a consequence of caregiving for someone with an LGG. Inductive thematic analysis was undertaken. We interviewed 19 ICs (mean age 54.6 years; 14 females, 5 males). Participants reported substantial emotional impact. Four themes and associated subthemes were generated: (e.g. feeling helpless), (e.g. anxiety about future uncertainty), (e.g. challenges of changed relationship dynamics), and (e.g. feeling burnout). Emotional impact in one area often exacerbated impact in another (e.g. future uncertainty impacted feelings of helplessness). Participants detailed the factors that helped them manage the emotional impact (e.g. being resilient). ICs of people with LGGs can experience wide-ranging emotional responses to and impacts of the illness, uncertain prognosis, care recipient changes, and the toll of caregiving. Adjustment and resilience are key protective factors, though further consideration of ways to identify and fulfil the emotional support needs of ICs of people with LGGs is required.
那些与低级别胶质瘤 (LGG) 患者关系最密切的人通常会扮演非正式照顾者 (IC) 的角色。额外的责任意味着癌症患者的照顾者可能会对自己的生活产生不利影响。我们探讨了照顾 LGG 患者对情绪的影响。这是 Ways Ahead 多方法项目中的一项描述性定性研究。我们对来自英国的个人进行了半结构化访谈，这些人目前或在过去 5 年内曾非正式照顾过患有 LGG 的人。访谈包括因照顾患有 LGG 的人而产生的情绪影响的经验。采用归纳主题分析。我们采访了 19 名 IC（平均年龄 54.6 岁；14 名女性，5 名男性）。参与者报告了重大的情绪影响。生成了四个主题和相关的子主题：（例如，感到无助），（例如，对未来不确定性的焦虑），（例如，改变关系动态的挑战），和（例如，感到倦怠）。一个领域的情绪影响往往会加剧另一个领域的影响（例如，未来的不确定性会影响无助感）。参与者详细描述了帮助他们应对情绪影响的因素（例如，有韧性）。LGG 患者的照顾者可能会对疾病、不确定的预后、照顾对象的变化以及照顾的负担产生广泛的情绪反应和影响。调整和适应力是关键的保护因素，但需要进一步考虑如何确定和满足 LGG 患者照顾者的情感支持需求。
