Division of Nursing Research & Education, Department of Population Sciences, Beckman Research Institute of the City of Hope, Duarte, CA, USA,
Support Care Cancer. 2014 Jun;22(6):1563-70. doi: 10.1007/s00520-014-2118-2. Epub 2014 Jan 19.
The journey from diagnosis through treatment to survivorship can be challenging for colorectal cancer (CRC) survivors with permanent ostomies. Memories of both the positive and negative health-care interactions can persist years after the initial diagnosis and treatment. The purpose of this paper is to describe the health-care experiences of long-term (>5 years) CRC survivors with ostomies.
Thirty-three CRC survivors with ostomies who were members of Kaiser Permanente, an integrated care organization, in Oregon, southwestern Washington and northern California participated in eight focus groups. Discussions from the focus groups were recorded, transcribed, and analyzed for potential categories and themes.
Health-care-related themes described CRC survivors' experiences with diagnosis, treatment decision-making, initial experiences with ostomy, and survivorship. Participants discussed both positive and negative health-care-related experiences, including the need for continued access to trained nurses for ostomy self-care, access to peer support, and resources related to managing persistent, debilitating symptoms.
Long-term CRC survivors with ostomies have both positive and negative health-care experiences, regardless of health-related quality of life (HRQOL) and gender. Long-term support mechanisms and quality survivorship care that CRC survivors with ostomies can access are needed to promote positive adjustments and improved HRQOL. The current literature in CRC survivorship suggests that HRQOL concerns can persist years after treatment completion. The coordination of care to manage persistent late- and long-term effects are still lacking for CRC survivors living with an ostomy. Findings from this qualitative analysis will aid in the development of support strategies that foster more positive adjustments for CRC survivors living with an ostomy and support their ongoing ostomy-related needs.
对于永久性造口的结直肠癌（CRC）幸存者来说，从诊断到治疗再到生存的过程可能充满挑战。他们对医疗保健积极和消极互动的记忆可能会在初始诊断和治疗后持续多年。本文的目的是描述长期（>5 年）有造口的 CRC 幸存者的医疗保健体验。
33 名有造口的 CRC 幸存者是俄勒冈州、华盛顿州西南部和加利福尼亚州北部 Kaiser Permanente 的成员，他们参加了 8 个焦点小组。从焦点小组讨论中记录、转录和分析潜在的类别和主题。
与医疗保健相关的主题描述了 CRC 幸存者的诊断、治疗决策、造口初始体验和生存体验。参与者讨论了积极和消极的医疗保健相关体验，包括继续获得训练有素的护士进行造口自我护理、获得同伴支持以及与管理持续的、使人衰弱的症状相关的资源的需求。
无论健康相关生活质量（HRQOL）和性别如何，长期有造口的 CRC 幸存者都有积极和消极的医疗保健体验。需要长期的支持机制和高质量的生存护理，以便促进积极的调整和改善 HRQOL。CRC 生存研究的当前文献表明，治疗完成后多年，HRQOL 问题仍然存在。对于患有造口的 CRC 幸存者，管理持续的晚期和长期影响的协调护理仍然缺乏。这项定性分析的结果将有助于制定支持策略，促进有造口的 CRC 幸存者更积极的调整，并满足他们持续的造口相关需求。
