Primary Palliative Care Research Group, Centre for Population Health Sciences: General Practice Section, University of Edinburgh, Edinburgh EH8 9DX.
BMJ. 2010 Jun 9;340:c2581. doi: 10.1136/bmj.c2581.
To assess if family care givers of patients with lung cancer experience the patterns of social, psychological, and spiritual wellbeing and distress typical of the patient, from diagnosis to death.
Secondary analysis of serial qualitative interviews carried out every three months for up to a year or to bereavement.
South east Scotland.
19 patients with lung cancer and their 19 family carers, totalling 88 interviews (42 with patients and 46 with carers).
Carers followed clear patterns of social, psychological, and spiritual wellbeing and distress that mirrored the experiences of those for whom they were caring, with some carers also experiencing deterioration in physical health that impacted on their ability to care. Psychological and spiritual distress were particularly dynamic and commonly experienced. In addition to the "Why us?" response, witnessing suffering triggered personal reflections in carers on the meaning and purpose of life. Certain key time points in the illness tended to be particularly problematic for both carers and patients: at diagnosis, at home after initial treatment, at recurrence, and during the terminal stage.
Family carers witness and share much of the illness experience of the dying patient. The multidimensional experience of distress suffered by patients with lung cancer was reflected in the suffering of their carers in the social, psychological, and spiritual domains, with psychological and spiritual distress being most pronounced. Carers may need to be supported throughout the period of illness not just in the terminal phase and during bereavement, as currently tends to be the case.
评估肺癌患者的家属在从诊断到死亡期间是否经历了与患者典型的社会、心理和精神健康及困扰模式。
对每三个月进行一次的连续定性访谈进行二次分析，最长可达一年或至丧亲。
苏格兰东南部。
19 名肺癌患者及其 19 名家属，共进行了 88 次访谈（42 次与患者，46 次与家属）。
家属经历了明确的社会、心理和精神健康及困扰模式，与他们所照顾的人的经历相吻合，一些家属的身体健康也恶化，影响了他们照顾的能力。心理和精神困扰尤其具有动态性，且常见。除了“为什么是我们？”的反应外，目睹患者的痛苦会引发家属对生活的意义和目的的个人反思。疾病的某些关键时间点对患者和家属都特别成问题：诊断时、初始治疗后在家中、复发时和终末期。
家属见证并分担了临终患者的大部分疾病经历。患者肺癌所经历的多维困扰反映在他们的家属在社会、心理和精神领域的痛苦中，其中心理和精神困扰最为明显。家属可能需要在整个疾病期间得到支持，而不仅仅是在终末期和丧亲期间，这与目前的情况往往不同。
