St John's Institute of Dermatology.
Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, U.K.
Br J Dermatol. 2018 Oct;179(4):882-888. doi: 10.1111/bjd.16447. Epub 2018 Jun 19.
Cutaneous T-cell lymphomas (CTCL) are rare cancers, which can be difficult to diagnose, are incurable and adversely affect quality of life, particularly in advanced disease. Families often provide care, but little is known about their experiences or needs while caring for their relative with advanced disease or in bereavement.
To explore the experiences of bereaved family caregivers of patients with CTCL.
Single, semi-structured qualitative interviews were conducted with bereaved family caregivers of patients with CTCL recruited via a supra-regional CTCL clinic. Transcribed interviews were analysed thematically, focusing on advanced disease, the approach of death and bereavement.
Fifteen carers of 11 deceased patients participated. Experiences clustered under four themes: (1) complexity of care and medical intervention; (2) caregiver roles in advanced CTCL; (3) person-centred vs. organization-centred care in advanced CTCL and (4) knowing and not knowing: reflections on dying, death and bereavement. Caregivers often had vivid recollections of the challenges of caring for their relative with advanced CTCL and some took on quasi-professional roles as a result. Advanced disease made high demands on both organizational flexibility and family resources. For many caregivers, seeing disease progression was a prolonged and profoundly traumatic experience. The extent to which they were prepared for their relative's death and supported in bereavement was highly variable. Sub-themes within each theme provide more detail about caregiver experiences.
Family caregivers should be considered part of the wider healthcare team, acknowledging their multiple roles and the challenges they encounter in looking after their relative with CTCL as the disease progresses. Their experiences highlight the importance of organizational flexibility and of good communication between healthcare providers in advanced CTCL.
皮肤 T 细胞淋巴瘤（CTCL）是一种罕见的癌症，诊断困难，无法治愈，会严重影响生活质量，尤其是在疾病晚期。患者的家庭通常会提供护理，但对于照顾晚期疾病患者或在亲人去世后的家庭护理人员的经历或需求知之甚少。
探讨 CTCL 晚期患者丧亲家庭护理人员的经历。
通过一个超区域 CTCL 诊所招募了 CTCL 晚期患者丧亲家庭护理人员，对他们进行了单次、半结构化的定性访谈。对转录的访谈进行了主题分析，重点关注晚期疾病、死亡过程和丧亲。
11 名已故患者的 15 名护理人员参与了研究。他们的经历主要集中在四个主题下：（1）护理和医疗干预的复杂性；（2）CTCL 晚期的护理人员角色；（3）以患者为中心与以组织为中心的 CTCL 晚期护理；（4）了解与不了解：对临终、死亡和丧亲的思考。护理人员往往对照顾晚期 CTCL 患者的挑战记忆犹新，有些护理人员因此承担了类似专业的角色。晚期疾病对组织的灵活性和家庭资源都提出了很高的要求。对许多护理人员来说，看到疾病的进展是一个漫长而极其创伤的经历。他们对亲人的死亡和丧亲的准备程度和支持程度差异很大。每个主题下的子主题提供了更多关于护理人员经历的细节。
家庭护理人员应被视为更广泛医疗团队的一部分，承认他们在照顾 CTCL 患者时的多种角色以及他们所面临的挑战，随着疾病的进展。他们的经历强调了在 CTCL 晚期，组织灵活性和医疗服务提供者之间良好沟通的重要性。
