Johansson Christina Melin, Axelsson Bertil, Danielson Ella
Sahlgrenska Academy, Institute of Health and Care Sciences, Göteborgs University, Göteborg, Sweden.
Cancer Nurs. 2006 Sep-Oct;29(5):391-9. doi: 10.1097/00002820-200609000-00007.
This study describes incurably ill cancer patients' perceptions of the quality of life at the end of life. Purposeful sampling was used to get as comprehensive descriptions as possible about quality of life. Five patients participated in repeated focus groups. Content analysis showed that the patients emphasized what they could perform and enjoy in daily life, not their shortcomings. Five themes were developed: "valuing ordinariness in life," "maintaining a positive life," "alleviated suffering," "significant relations," and "managing life when ill." The themes describe that the patients could participate in daily and social life despite cancer. Relation with family and palliative team deepened during the progress of illness in such that a resonance developed in communication. Other important findings were that patients' memories helped them to maintain a positive life and that the patients used individual strategies to relieve pain by emotional and physical distractions. For the patients, managing life as ill meant taking actions with creative thinking in solving problems as a way to cope and achieve quality of life. These positive findings from the focus groups have led to continued research regarding how patients with incurable cancer perceive quality of life.
本研究描述了身患绝症的癌症患者对临终生活质量的看法。采用目的抽样法以尽可能全面地描述生活质量。五名患者参与了多次焦点小组讨论。内容分析表明，患者强调的是他们在日常生活中能够做到和享受的事情，而非自身的不足。由此形成了五个主题：“珍视生活中的平凡”“保持积极的生活”“减轻痛苦”“重要的人际关系”以及“患病时应对生活”。这些主题表明，尽管身患癌症，患者仍能参与日常和社交生活。在疾病进展过程中，患者与家人及姑息治疗团队的关系不断加深，从而在沟通中产生了共鸣。其他重要发现包括，患者的记忆有助于他们保持积极的生活，并且患者会采用个人策略，通过情感和身体上的转移注意力来缓解疼痛。对患者而言，患病时应对生活意味着以创造性思维采取行动解决问题，以此来应对并实现生活质量。焦点小组的这些积极发现引发了关于晚期癌症患者如何看待生活质量的持续研究。
