Longacre Margaret L, Galloway Thomas J, Parvanta Claudia F, Fang Carolyn Y
Fox Chase Cancer Center, 333 Cottman Avenue, Philadelphia, PA, 19111, USA.
University of the Sciences, 600 South 43rd Street, Philadelphia, PA, 19104-4495, USA.
J Cancer Educ. 2015 Dec;30(4):786-91. doi: 10.1007/s13187-015-0814-3.
Despite advances in treatment, head and neck cancer (HNC) patients often experience considerable functional impairment during and following treatment. As a result, family caregivers are essential in a patient's recovery; however, few caregivers are well-prepared to handle the extensive caregiving needs of this patient population. To date, little is known about HNC caregivers' informational needs in this role. Thus, we surveyed a sample of HNC caregivers about their informational needs including those related to interacting in the medical context as a caregiver and meeting patient needs. We also asked these caregivers their preferences for obtaining caregiving information. We conducted a cross-sectional study of 59 family caregivers for HNC patients who had completed radiation therapy at a comprehensive cancer center. The majority of caregivers (74.6%) reported having high informational need at diagnosis related to interacting as a caregiver. Although the need for such information decreased over time, over half still had a high need for information at treatment end. Importantly, caregivers who desired information about reducing patient pain and distress also reported having greater informational needs on issues related to interacting in the medical context. Further, the caregivers most often preferred to receive information from health-care professionals as a first source. However, preferring an informal (e.g., Internet) resource at first was significantly associated with needing information on how to talk to a doctor or nurse. The development of evidence-based resources and tools for HNC caregivers as well as clinicians may help caregivers more effectively manage patient symptoms and warrants further attention. Further, Internet resources may represent an effective resource for providing caregivers with strategies toward enhancing communication with healthcare professionals.
尽管在治疗方面取得了进展,但头颈癌(HNC)患者在治疗期间和治疗后常常会经历相当大的功能障碍。因此,家庭护理人员对患者的康复至关重要;然而,很少有护理人员做好充分准备来应对这类患者群体广泛的护理需求。迄今为止,对于担任这一角色的头颈癌护理人员的信息需求了解甚少。因此,我们对一组头颈癌护理人员的信息需求进行了调查,包括与作为护理人员在医疗环境中互动以及满足患者需求相关的信息需求。我们还询问了这些护理人员获取护理信息的偏好。我们对在一家综合癌症中心完成放射治疗的59名头颈癌患者的家庭护理人员进行了一项横断面研究。大多数护理人员(74.6%)报告称,在诊断时作为护理人员进行互动方面有很高的信息需求。尽管随着时间推移对这类信息的需求有所下降,但超过一半的护理人员在治疗结束时仍有很高的信息需求。重要的是,那些希望获得有关减轻患者疼痛和痛苦信息的护理人员在与医疗环境互动相关问题上也报告有更大的信息需求。此外,护理人员最常倾向于首先从医疗保健专业人员那里获取信息。然而,首先倾向于非正式(如互联网)资源与需要有关如何与医生或护士交谈的信息显著相关。为头颈癌护理人员以及临床医生开发基于证据的资源和工具可能有助于护理人员更有效地管理患者症状,值得进一步关注。此外,互联网资源可能是为护理人员提供增强与医疗保健专业人员沟通策略的有效资源。