保持晚期癌症患者人格的完整性:对患者、亲属和护理专业人员进行的深入定性研究。
Preserving the integrity of personhood in people with advanced cancer: An in-depth qualitative study among patients, relatives, and care professionals.
发表日期:2024 Aug 16
作者:
Alina Senßfelder, Matthias Havemann, Anna J Pedrosa Carrasco, Pia von Blanckenburg, Carola Seifart
来源:
PALLIATIVE MEDICINE
摘要:
每一次晚期癌症诊断都给患者及其亲属带来多个层面的巨大挑战:无论是身体、实践、社会挑战,还是个人层面的挑战。虽然之前已经对具体方面进行了研究,但缺乏总体方法。了解晚期癌症患者的生活经历,找出癌症护理连续过程中的差距,确定有意义的干预措施的潜在机会,并为从业者和开发理论框架研究人员进行了一项定性研究,对患者、亲属和护理专业人员进行了深入访谈。访谈内容逐字记录并使用传统内容分析进行分析。54 次访谈涉及来自大学肿瘤科和姑息治疗服务机构的 17 名患者、15 名亲属和 22 名护理专业人员(从医生到丧葬承办人)。所有受访者均由德国大学医院招募。我们开发了一种新颖的模型,将晚期癌症的诊断描述为一种高度破坏性的经历,有可能通过四个方面挑战癌症患者的人格完整性:沟通、知识、人际关系和信心。我们能够识别导致这些领域崩溃的因素以及支持人格完整性恢复的因素。开发的模型可以更全面地了解患者的生活经历。它可以帮助在癌症护理连续过程中开发新的干预措施,以支持患者应对他们面临的复杂挑战。这些干预措施应侧重于支持人格的完整性。
Every advanced cancer diagnosis brings enormous challenges to patients and their relatives on numerous levels: be it physical, practical, social challenges, or on a more personal level. While specific aspects have been researched before, an overarching approach is lacking.To understand the lived experiences of people with advanced cancer, to identify gaps along the cancer care continuum, to identify potential opportunities for meaningful interventions and to develop a theoretical framework for practitioners and researchers.A qualitative study using in-depth interviews with patients, relatives, and care professionals. Interviews were transcribed verbatim and analysed using a conventional content analysis.Fifty-four interviews with 17 patients from a university oncology department and palliative care service, 15 relatives and 22 care professionals from physicians to funeral directors. All interviewees were recruited by a German university hospital.We developed a novel model describing the diagnosis with advanced cancer as a highly disruptive experience that threatens to challenge the integrity of personhood in cancer patients through four areas: communication, knowledge, relationships, and confidence. We were able to identify factors leading to disintegration in these areas and factors supporting a restoration of integrity of personhood.The developed model provides a more thorough understanding of patients lived experiences. It can help to develop new interventions along the cancer care continuum to support patients in the complex challenges they face. These interventions should focus on supporting the integrity of personhood.