BACKGROUND:The unique burden of treatment and survivorship of patients with bladder cancer can negatively impact caregiver experience and their use of supportive care resources. OBJECTIVE:To assess caregivers’ well-being and their perception of potential supportive resources. METHODS:In this cross-sectional survey, caregivers of patients with bladder cancer (N = 630) were recruited through the nationwide Bladder Cancer Advocacy Network Patient Survey Network. We used stakeholder-developed questionnaires to examine caregiver well-being (i.e., physical well-being, tiredness, fear, worry, sadness), the perceived helpfulness of potential resources (i.e., web-based and print-based information, specialized support, personal stories of other caregivers, phone-call and online chat with other caregivers), and influencing factors. RESULTS:Caregivers more frequently reported emotional well-being as a moderate to serious problem (67% for fear, 78% for worry, 66% for sadness) compared with physical well-being (30% ) and tiredness (47% ). Decreased well-being was associated with female gender of the caregiver, higher than high school education, or caring for a patient with advanced (versus non-invasive) bladder cancer. Of six potential resources, “web-based information” was perceived as “very helpful” among 79% of respondents, followed by “personal stories from other caregivers” (62% ). Caregiver preferences for “web-based information” was not associated with any specific demographic or clinical factors. CONCLUSIONS:Caregivers reported moderate to serious problems with emotional and physical well-being. Web-based platforms were perceived as beneficial supportive resources for bladder cancer caregivers. Future intervention research should target the influencing factors identified in this study to optimize the health outcomes of caregivers and enhance the supportive care resources for improving their well-being.

中文翻译：

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膀胱癌患者护理人员的幸福感和对支持资源的看法


背景：膀胱癌患者独特的治疗和生存负担可能会对护理人员的体验及其对支持性护理资源的使用产生负面影响。目的：评估护理人员的福祉及其对潜在支持资源的看法。方法：在这项横断面调查中，通过全国膀胱癌倡导网络患者调查网络招募了膀胱癌患者的护理人员（N = 630）。我们使用利益相关者制定的调查问卷来检查护理人员的福祉（即身体健康、疲劳、恐惧、担忧、悲伤）、潜在资源的感知帮助（即基于网络和印刷品的信息、专业支持、其他护理人员的个人故事、与其他护理人员的电话和在线聊天）以及影响因素。结果：与身体健康 (30%) 和疲劳 (47%) 相比，看护者更频繁地将情绪健康视为中度至严重问题（67% 表示恐惧，78% 表示担心，66% 表示悲伤）。幸福感下降与护理人员的女性性别、高中以上学历或护理晚期（相对于非侵袭性）膀胱癌患者有关。在六种潜在资源中，79% 的受访者认为“基于网络的信息”“非常有帮助”，其次是“其他护理人员的个人故事”（62%）。护理人员对“基于网络的信息”的偏好与任何特定的人口统计或临床因素无关。结论：护理人员报告存在中度至严重的情绪和身体健康问题。基于网络的平台被认为是膀胱癌护理人员有益的支持资源。 未来的干预研究应针对本研究中确定的影响因素，以优化护理人员的健康结果，并增强支持性护理资源以改善他们的福祉。