Melin-Johansson C, Axelsson B, Danielson E
The Sahlgrenska Academy at Göteborgs University, Institute of Health and Care Sciences, Göteborg, Sweden.
Eur J Cancer Care (Engl). 2007 Jul;16(4):338-45. doi: 10.1111/j.1365-2354.2006.00754.x.
Caregivers' perceptions on terminally ill family members' quality of life is rarely described. The aim of this study was to describe caregivers' perceptions about terminally ill family members' quality of life when suffering from cancer. Four caregivers participated in repeated focus group, and the data were analysed using qualitative content analysis. The findings were presented through five themes: 'living a normal life', 'being relieved from burdens', 'having a sense of belonging', 'being a symbol of incurable illness' and 'having a sense of dignity'. We found that to manage daily life it was significant to keep up a normal life and participate in social life. One new insight in this study was that caregivers contributed to an extending understanding to the term meaning in which the sense of belonging was fundamental. An obstacle for the sense of belonging was illuminated as the visible signs of incurable illness that stigmatized the ill person, and influenced the dignity. This study highlights the importance of supportive actions from significant others and healthcare professionals for terminally ill family members' quality of life.
照顾者对身患绝症的家庭成员生活质量的看法鲜有描述。本研究的目的是描述照顾者对身患癌症的绝症家庭成员生活质量的看法。四名照顾者参与了多次焦点小组讨论，并采用定性内容分析法对数据进行了分析。研究结果通过五个主题呈现：“过正常生活”、“减轻负担”、“有归属感”、“成为不治之症的象征”和“有尊严感”。我们发现，为了应对日常生活，维持正常生活并参与社交生活非常重要。本研究的一个新见解是，照顾者有助于扩展对归属感这一基本概念含义的理解。归属感的一个障碍被揭示为不治之症的明显迹象，这些迹象给患者带来污名，并影响其尊严。本研究强调了重要他人和医护人员的支持行动对绝症家庭成员生活质量的重要性。
