PDF(Pubmed)
Abstract：
OBJECTIVE: The aim of this study was to explore patients\' experience of participation in the treatment decision of proton beam therapy versus conventional radiotherapy.
BACKGROUND: Proton beam therapy (PBT) has become a treatment option for some cancer patients receiving radiotherapy. The decision to give PBT instead of conventional radiotherapy (CRT) needs to be carefully planned together with the patient to ensure that the degree of participation is based on individuals\' preferences. There is a knowledge gap of successful approaches to support patients\' participation in the decision-making process, which is particularly important when it comes to the situation of having to choose between two treatment options such as PBT and CRT, with similar expected outcomes.
METHODS: We conducted a secondary analysis of qualitative data collected from interviews with patients who received PBT for their brain tumor. Transcribed verbatims from interviews with 22 patients were analyzed regarding experiences of participation in the decision-making process leading to PBT.
RESULTS: Participants experienced their participation in the decision-making process to a varying degree, and with individual preferences. Four themes emerged from data: to be a voice that matters, to get control over what will happen, being in the hand of doctors\' choice, and feeling selected for treatment.
CONCLUSIONS: A decision for treatment with PBT can be experienced as a privilege but can also cause stress as it might entail practical issues affecting everyday life in a considerable way. For the patient to have confidence in the decision-making process, patients\' preferences, expectations, and experiences must be included by the healthcare team. Including the patient in the healthcare team as an equal partner by confirming the person enables and facilitates for patients\' voice to be heard and reckoned with. Person-centered care building on a partnership between patients and healthcare professionals should provide the right basis for the decision-making process.
BACKGROUND: Proton beam therapy (PBT) has become a treatment option for some cancer patients receiving radiotherapy. The decision to give PBT instead of conventional radiotherapy (CRT) needs to be carefully planned together with the patient to ensure that the degree of participation is based on individuals\' preferences. There is a knowledge gap of successful approaches to support patients\' participation in the decision-making process, which is particularly important when it comes to the situation of having to choose between two treatment options such as PBT and CRT, with similar expected outcomes.
METHODS: We conducted a secondary analysis of qualitative data collected from interviews with patients who received PBT for their brain tumor. Transcribed verbatims from interviews with 22 patients were analyzed regarding experiences of participation in the decision-making process leading to PBT.
RESULTS: Participants experienced their participation in the decision-making process to a varying degree, and with individual preferences. Four themes emerged from data: to be a voice that matters, to get control over what will happen, being in the hand of doctors\' choice, and feeling selected for treatment.
CONCLUSIONS: A decision for treatment with PBT can be experienced as a privilege but can also cause stress as it might entail practical issues affecting everyday life in a considerable way. For the patient to have confidence in the decision-making process, patients\' preferences, expectations, and experiences must be included by the healthcare team. Including the patient in the healthcare team as an equal partner by confirming the person enables and facilitates for patients\' voice to be heard and reckoned with. Person-centered care building on a partnership between patients and healthcare professionals should provide the right basis for the decision-making process.
摘要：
目的：本研究旨在探讨患者参与质子束治疗与常规放疗治疗决策的经验。
背景：质子束治疗（PBT）已成为一些接受放射治疗的癌症患者的治疗选择。给予PBT而不是常规放疗（CRT）的决定需要与患者一起仔细计划，以确保参与程度基于个人偏好。支持患者参与决策过程的成功方法存在知识差距，当涉及到必须在PBT和CRT等两种治疗方案之间进行选择的情况时，这一点尤其重要，具有类似的预期结果。
方法：我们对接受PBT治疗的脑肿瘤患者的访谈中收集的定性数据进行了二次分析。分析了来自22名患者访谈的逐字记录，了解参与导致PBT的决策过程的经验。
结果：参与者在决策过程中经历了不同程度的参与，和个人偏好。数据中出现了四个主题：成为重要的声音，为了控制将要发生的事情，在医生的手中选择，和选择治疗的感觉。
结论：PBT治疗的决定可能是一种特权，但也可能引起压力，因为它可能带来影响日常生活的实际问题。为了让患者对决策过程有信心，患者的偏好，期望,医疗团队必须包括经验。将患者纳入医疗团队作为平等的合作伙伴，确认该人能够并促进患者的声音被听到和考虑。以人为本的护理建立在患者和医疗保健专业人员之间的伙伴关系上，应为决策过程提供正确的基础。
背景：质子束治疗（PBT）已成为一些接受放射治疗的癌症患者的治疗选择。给予PBT而不是常规放疗（CRT）的决定需要与患者一起仔细计划，以确保参与程度基于个人偏好。支持患者参与决策过程的成功方法存在知识差距，当涉及到必须在PBT和CRT等两种治疗方案之间进行选择的情况时，这一点尤其重要，具有类似的预期结果。
方法：我们对接受PBT治疗的脑肿瘤患者的访谈中收集的定性数据进行了二次分析。分析了来自22名患者访谈的逐字记录，了解参与导致PBT的决策过程的经验。
结果：参与者在决策过程中经历了不同程度的参与，和个人偏好。数据中出现了四个主题：成为重要的声音，为了控制将要发生的事情，在医生的手中选择，和选择治疗的感觉。
结论：PBT治疗的决定可能是一种特权，但也可能引起压力，因为它可能带来影响日常生活的实际问题。为了让患者对决策过程有信心，患者的偏好，期望,医疗团队必须包括经验。将患者纳入医疗团队作为平等的合作伙伴，确认该人能够并促进患者的声音被听到和考虑。以人为本的护理建立在患者和医疗保健专业人员之间的伙伴关系上，应为决策过程提供正确的基础。
