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癌症患者伴侣对基于网络的心理干预的需求和偏好:一项定性研究。

Needs and Preferences of Partners of Cancer Patients Regarding a Web-Based Psychological Intervention: A Qualitative Study.

作者信息

Köhle Nadine, Drossaert Constance Hc, Oosterik Suzan, Schreurs Karlein Mg, Hagedoorn Mariët, van Uden-Kraan Cornelia F, Verdonck-de Leeuw Irma M, Bohlmeijer Ernst T

机构信息

University of Twente, Department of Psychology, Health & Technology, Enschede, Netherlands.

Stichting Mindfit, Zwolle, Netherlands.

出版信息

JMIR Cancer. 2015 Dec 29;1(2):e13. doi: 10.2196/cancer.4631.

Abstract

BACKGROUND

Evidence-based, easily accessible, supportive interventions for partners of cancer patients are limited, despite the fact that they often suffer from diminished emotional, social, physical, and relational functioning. To develop a new intervention that will fit their demands, it is important to consult potential users.

OBJECTIVE

To examine partners' interest in a Web-based psychological intervention and to identify their needs and wishes regarding such an intervention.

METHODS

Semistructured interviews were conducted with 16 partners of cancer patients, who varied in terms of age, gender, education, employment, type, and stage of disease. Partners were asked (1) whether they would use a psychological Web-based intervention and which preconditions (maximum time, structure, participate alone or with their partner) it should meet; (2) which functionalities (information, peer support, online psychological counseling) the intervention should contain; and (3) which topics (eg, taking care of oneself) should be addressed. Data were coded by 2 coders independently.

RESULTS

The need for a Web-based intervention varied. Arguments for being interested in a Web-based intervention included the need for acknowledgement; the need for someone they could talk to; and the need for information, tips, and support. Based on their experiences as a partner of a cancer patient, participants would prefer an intervention that is not too time-consuming (about 1-2 hours a week) and which is based on a "step-by-step" approach, meaning that the content of the intervention should match the stage of their partner's disease. Also, they would prefer a positive approach, which means that the intervention should be a source of hope and energy. Most participants stated that they would prefer to participate without their ill spouse, because they do not want to burden their partners with their own problems. An intervention should contain information and optional peer support. Participants' opinions about online psychological counseling in the intervention were divided. Arguments for online psychological counseling were that a professional could check on them and they were able to ask questions. Arguments against online counseling were that partners were not in need for guidance or they had enough support from usual care. Topics with the highest priority were "coping with feelings and emotions," "should I or shouldn't I spare my partner?," "communicating with each other," "asking for help and refusing help," and "moving on with life after cancer treatment." Furthermore, participants suggested additional topics of "dare to enjoy" and "acceptance of the patient's disease."

CONCLUSIONS

A Web-based intervention can be a valuable addition to existing support initiatives for partners of cancer patients. This study provides important information about the content and form of such an intervention. Flexibility and a positive approach seem to be the most important features.

摘要

背景

尽管癌症患者的伴侣常常在情绪、社交、身体和人际关系功能方面出现衰退,但基于证据的、易于获取的支持性干预措施却很有限。为开发一种符合他们需求的新干预措施,咨询潜在用户很重要。

目的

研究伴侣对基于网络的心理干预的兴趣,并确定他们对这种干预的需求和期望。

方法

对16位癌症患者的伴侣进行了半结构化访谈,这些伴侣在年龄、性别、教育程度、职业、疾病类型和阶段等方面各不相同。询问伴侣们:(1)他们是否会使用基于网络的心理干预措施,以及该干预措施应满足哪些前提条件(最长时间、结构、独自参与还是与伴侣一起参与);(2)干预措施应包含哪些功能(信息、同伴支持、在线心理咨询);(3)应涉及哪些主题(例如照顾自己)。数据由两名编码员独立编码。

结果

对基于网络的干预措施的需求各不相同。对基于网络的干预措施感兴趣的理由包括需要得到认可;需要有人可以倾诉;需要信息、建议和支持。基于他们作为癌症患者伴侣的经历,参与者更喜欢不太耗时(每周约1 - 2小时)且采用 “循序渐进” 方法的干预措施,这意味着干预内容应与伴侣疾病的阶段相匹配。此外,他们更喜欢积极的方法,即干预措施应成为希望和能量的来源。大多数参与者表示他们更愿意在患病配偶不参与的情况下参与,因为他们不想让自己的问题给伴侣带来负担。干预措施应包含信息和可选的同伴支持。参与者对干预措施中在线心理咨询的看法存在分歧。支持在线心理咨询的理由是专业人员可以检查他们的情况,而且他们能够提问。反对在线咨询的理由是伴侣不需要指导,或者他们从常规护理中已获得足够的支持。优先级最高的主题是 “应对感受和情绪”“我是否应该让伴侣省心?”“相互沟通”“寻求帮助和拒绝帮助” 以及 “癌症治疗后继续生活”。此外,参与者还建议增加 “敢于享受” 和 “接受患者的疾病” 等主题。

结论

基于网络的干预措施可以成为现有针对癌症患者伴侣的支持举措的宝贵补充。本研究提供了有关此类干预措施的内容和形式的重要信息。灵活性和积极的方法似乎是最重要的特征。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/f665/5367664/36c4b44448cd/cancer_v1i2e13_fig1.jpg

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