Molassiotis Alex, Wilson Barbara, Blair Susan, Howe Tracy, Cavet James
School of Nursing, Midwifery & Social Work, University of Manchester, Manchester, UK.
Support Care Cancer. 2011 Jan;19(1):101-11. doi: 10.1007/s00520-009-0793-1. Epub 2009 Dec 9.
The purpose of this study was to explore the experience of living with myeloma after completion of treatments in patients and their informal caregivers.
Qualitative interviews were carried out with 20 patients living with myeloma and 16 of their informal caregivers (mostly spouses), asking them through semi-structured interviews to talk about the effects of myeloma on their lives, issues and concerns, their supportive care needs and how they were coping in everyday life.
Key findings indicate the significant impact myeloma has on patients' and caregivers' emotional, role, social and work-related areas of life. While patients seemed less engaged with their illness, their informal caregivers were providing practical and emotional support to patients almost exclusively, often by neglecting their own needs. This increased engagement with the informal caring often led to experiences of a heightened illness burden and difficulties with coping. Both patients and caregivers had significant fears and uncertainty about the future, with myeloma being described as a 'time bomb'. Both patients and caregivers were concealing stressful situations related to the illness from each other in an effort to protect them, although this resulted in isolation.
While health professionals' attention has been concentrated in helping patients to get through treatments, it is imperative that psychosocial rehabilitation is offered also to those who survive many years after diagnosis and are off treatments. Caregivers are particularly vulnerable to the high demands of caring for myeloma patients, and a more concerted action by health professionals should be directed to them.
本研究的目的是探讨骨髓瘤患者及其非正式照料者在完成治疗后与骨髓瘤共存的经历。
对20名骨髓瘤患者及其16名非正式照料者（大多为配偶）进行了定性访谈，通过半结构化访谈询问他们骨髓瘤对其生活的影响、问题与担忧、他们的支持性护理需求以及他们在日常生活中的应对方式。
主要研究结果表明，骨髓瘤对患者和照料者生活中的情感、角色、社交和工作相关领域有重大影响。虽然患者似乎对自己的疾病关注较少，但他们的非正式照料者几乎完全在为患者提供实际和情感支持，常常忽视自身需求。这种更多地参与非正式照料的情况往往导致疾病负担加重和应对困难。患者和照料者对未来都有重大恐惧和不确定性，骨髓瘤被描述为一颗“定时炸弹”。患者和照料者都在相互隐瞒与疾病相关的压力情况，试图保护对方，尽管这导致了孤立。
虽然医疗专业人员的注意力一直集中在帮助患者完成治疗上，但对于那些在诊断多年后存活且停止治疗的患者，提供心理社会康复也至关重要。照料者在照顾骨髓瘤患者的高要求下特别脆弱，医疗专业人员应针对他们采取更协调一致的行动。
