Institute for Biomedical Ethics, University of Basel, Basel, Switzerland.
Patient Association ALS Patients Connected, Bilthoven, The Netherlands.
Health Soc Care Community. 2022 Sep;30(5):e1935-e1947. doi: 10.1111/hsc.13625. Epub 2021 Oct 31.
Informal caregivers, mainly family members and friends, provide supportive and palliative care for people with amyotrophic lateral sclerosis (ALS) during their terminal disease course. Informal caregiving for people with ALS continues towards palliative care and end-of-life care with the progression of the disease. In this study, we provide a theoretical understanding of informal caregiving in ALS utilising 23 semi-structured interviews conducted with informal caregivers of people with ALS (pwALS) in Switzerland. Due to the expected death of the care recipient, our grounded theory approach outlines informal caregivers' caregiving work as an effort to secure a balance amongst different caregiving activities, which feed into the final stage of providing palliative care. Overall, our theoretical understanding of ALS informal caregiving work encompasses the core category 'holding the balance' and four secondary categories: 'Organising support', 'being present', 'managing everyday life' and 'keeping up with ALS'. The core category of holding the balance underlines the significance of ensuring care and normalcy even as disease progresses and until the end of life. For the informal caregivers, this balancing act is the key element of care provision to pwALS and therefore guides decisions surrounding caregiving. On this understanding, those caregivers that succeed in holding the balance can provide care at home until death. The balance is heavily influenced by contextual factors of caregiving, for example relating to personal characteristics of the caregiver, or activities of caregiving where the goal is to ensure the quality of life of the pwALS. As there is a heterogeneity of speed and subtype of progression of ALS, our work accounts for multiple caregiving trajectories.
非专业照护者（主要是家庭成员和朋友）在肌萎缩性侧索硬化症（ALS）患者的终末期病程中为其提供支持性和姑息性照护。随着疾病的进展，ALS 患者的非专业照护将持续向姑息治疗和临终关怀过渡。在这项研究中，我们利用对瑞士 23 名 ALS 患者非专业照护者进行的半结构化访谈，从理论上理解 ALS 中的非专业照护。由于照护对象预计即将死亡，我们的扎根理论方法将非专业照护者的照护工作描述为一种努力，以平衡不同的照护活动，这些活动为提供姑息治疗的最后阶段提供支持。总的来说，我们对 ALS 非专业照护工作的理论理解包含核心范畴“保持平衡”和四个次要范畴：“组织支持”、“在场”、“管理日常生活”和“应对 ALS”。“保持平衡”的核心范畴强调了在疾病进展和生命结束时确保照护和正常生活的重要性。对于非专业照护者来说，这种平衡行为是为 ALS 患者提供照护的关键要素，因此指导着围绕照护的决策。在此理解的基础上，那些成功保持平衡的照护者可以在家中为患者提供照护，直至死亡。平衡受到照护背景因素的严重影响，例如与照护者的个人特征相关，或者与确保 ALS 患者生活质量相关的照护活动。由于 ALS 的进展速度和亚型存在异质性，我们的工作考虑了多种照护轨迹。
