PDF(Pubmed)
Abstract：
BACKGROUND: Cancer is a disease that transcends what is purely medical, profoundly affecting the day-to-day life of both patients and family members. Previous research has shown that the consequences of cancer are greatly aggravated in patients at the end of life, at a time when they must also grapple with numerous unmet needs. The main objective of this study was to obtain more in-depth insight into these needs, primarily in patients with end-stage cancer nearing death.
METHODS: Semi-structured interviews were conducted in Spain with cancer patients at the end of life (n = 3) and their family members (n = 12). The findings from the interviews were analyzed using qualitative thematic analysis and a grounded theory approach.
RESULTS: Four major themes emerged from the interviews that explored the needs and concerns of patients with cancer at the end of life: (1) physical well-being (2) emotional well-being (3) social well-being and (4), needs relating to information and autonomous decision-making. The interviews also shed light on the specific needs of family members during this period, namely the difficulties of managing increased caregiver burden and maintaining a healthy work-life balance.
CONCLUSIONS: A lack of support, information and transparency during a period of immense vulnerability makes the end-of-life experience even more difficult for patients with cancer. Our findings highlight the importance of developing a more in-depth understanding of the needs of this population, so that informed efforts can be made to improve palliative healthcare and implement more comprehensive care and support at the end of life.
METHODS: Semi-structured interviews were conducted in Spain with cancer patients at the end of life (n = 3) and their family members (n = 12). The findings from the interviews were analyzed using qualitative thematic analysis and a grounded theory approach.
RESULTS: Four major themes emerged from the interviews that explored the needs and concerns of patients with cancer at the end of life: (1) physical well-being (2) emotional well-being (3) social well-being and (4), needs relating to information and autonomous decision-making. The interviews also shed light on the specific needs of family members during this period, namely the difficulties of managing increased caregiver burden and maintaining a healthy work-life balance.
CONCLUSIONS: A lack of support, information and transparency during a period of immense vulnerability makes the end-of-life experience even more difficult for patients with cancer. Our findings highlight the importance of developing a more in-depth understanding of the needs of this population, so that informed efforts can be made to improve palliative healthcare and implement more comprehensive care and support at the end of life.
摘要：
背景：癌症是一种超越纯粹医学的疾病，深刻影响患者和家庭成员的日常生活。以前的研究表明，癌症的后果在患者生命结束时大大加重，在他们还必须努力满足许多未满足的需求的时候。这项研究的主要目的是更深入地了解这些需求，主要是在接近死亡的终末期癌症患者中。
方法：在西班牙对生命末期的癌症患者（n=3）及其家庭成员（n=12）进行了半结构化访谈。使用定性主题分析和扎根理论方法对访谈结果进行了分析。
结果：从探讨癌症患者在生命末期的需求和关注的访谈中出现了四个主要主题：（1）身体健康（2）情感健康（3）社会健康和（4），与信息和自主决策相关的需求。访谈还揭示了在此期间家庭成员的具体需求，即难以管理增加的照顾者负担和保持健康的工作与生活平衡。
结论：缺乏支持，在巨大的脆弱性时期，信息和透明度使癌症患者的临终经历更加困难。我们的发现强调了对这一人群的需求进行更深入了解的重要性，以便在知情的情况下努力改善姑息医疗保健，并在生命结束时实施更全面的护理和支持。
方法：在西班牙对生命末期的癌症患者（n=3）及其家庭成员（n=12）进行了半结构化访谈。使用定性主题分析和扎根理论方法对访谈结果进行了分析。
结果：从探讨癌症患者在生命末期的需求和关注的访谈中出现了四个主要主题：（1）身体健康（2）情感健康（3）社会健康和（4），与信息和自主决策相关的需求。访谈还揭示了在此期间家庭成员的具体需求，即难以管理增加的照顾者负担和保持健康的工作与生活平衡。
结论：缺乏支持，在巨大的脆弱性时期，信息和透明度使癌症患者的临终经历更加困难。我们的发现强调了对这一人群的需求进行更深入了解的重要性，以便在知情的情况下努力改善姑息医疗保健，并在生命结束时实施更全面的护理和支持。
