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评估皮肤黑色素瘤患者的诊断影响及相关支持性护理需求。

Assessing the impact of diagnosis and the related supportive care needs in patients with cutaneous melanoma.

作者信息

Stamataki Zoe, Brunton L, Lorigan P, Green A C, Newton-Bishop J, Molassiotis A

机构信息

Christie NHS Foundation Trust, Block C, Withington Hall Cotton Lane, Manchester, M20 4UX, UK,

出版信息

Support Care Cancer. 2015 Mar;23(3):779-89. doi: 10.1007/s00520-014-2414-x. Epub 2014 Sep 5.

Abstract

PURPOSE

Despite the large number of people affected by melanoma, little is known about the specific needs of melanoma patients. Understanding the effects of melanoma diagnosis and the specific supportive care needs of this group of patients is a necessary step towards provision of effective psychosocial care.

METHODS

Semi-structured interviews were carried out with 15 patients with malignant melanoma of the skin. The sample size, which was purposive, included 8 females and 7 males from 27 to 78 years old. Data were analysed using the NVIVO 8 software and principles of thematic analysis.

RESULTS

Four major areas were identified: (a) Emotional effects due to body image, fear of the sun and uncertainty for the future; (b) Effects on Relationships, with some patients in need of more support than others from family and work colleagues; (c) Functional effects due to on-going symptoms such as pain and lymphedema; and (d) Health System and Information Needs, around the clarity, quality and timing of the information received from the health care professionals.

CONCLUSIONS

The findings suggest that we often fail to pick up melanoma patients' health and psychosocial needs and fail to refer them appropriately, rather than the services not being available. Interventions should focus on patient and carer education about melanoma and sun protection, psychosocial support and effective information giving. Patient-reported outcome measures should routinely be collected to identify issues of specific concerns to the patients and directing them to the right services based on their individual needs.

摘要

目的

尽管有大量人群受到黑色素瘤的影响,但对于黑色素瘤患者的具体需求却知之甚少。了解黑色素瘤诊断的影响以及这组患者特定的支持性护理需求是提供有效心理社会护理的必要步骤。

方法

对15例皮肤恶性黑色素瘤患者进行了半结构式访谈。样本为目的性抽样,包括8名女性和7名男性,年龄在27岁至78岁之间。使用NVIVO 8软件和主题分析原则对数据进行分析。

结果

确定了四个主要方面:(a) 因身体形象、对阳光的恐惧和对未来的不确定性产生的情绪影响;(b) 对人际关系的影响,一些患者比其他患者更需要家人和同事的支持;(c) 由疼痛和淋巴水肿等持续症状引起的功能影响;以及(d) 围绕从医护人员那里获得的信息的清晰度、质量和及时性的卫生系统和信息需求。

结论

研究结果表明,我们常常未能了解黑色素瘤患者的健康和心理社会需求,也未能进行适当的转诊,而不是没有相关服务。干预措施应侧重于对患者及其护理人员进行黑色素瘤和防晒教育、心理社会支持以及提供有效信息。应常规收集患者报告的结局指标,以识别患者特别关注的问题,并根据他们的个人需求引导他们获得合适的服务。

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