Yuen E Y N, Dodson S, Batterham R W, Knight T, Chirgwin J, Livingston P M
Public Health Innovation, Population Health Strategic Research Centre, Deakin University, Melbourne, Victoria, Australia.
School of Psychology, Faculty of Health, Deakin University, Melbourne, Victoria, Australia.
Eur J Cancer Care (Engl). 2016 Mar;25(2):294-306. doi: 10.1111/ecc.12284. Epub 2015 Jan 29.
Caregivers play a vital role in caring for people diagnosed with cancer. However, little is understood about caregivers' capacity to find, understand, appraise and use information to improve health outcomes. The study aimed to develop a conceptual model that describes the elements of cancer caregiver health literacy. Six concept mapping workshops were conducted with 13 caregivers, 13 people with cancer and 11 healthcare providers/policymakers. An iterative, mixed methods approach was used to analyse and synthesise workshop data and to generate the conceptual model. Six major themes and 17 subthemes were identified from 279 statements generated by participants during concept mapping workshops. Major themes included: access to information, understanding of information, relationship with healthcare providers, relationship with the care recipient, managing challenges of caregiving and support systems. The study extends conceptualisations of health literacy by identifying factors specific to caregiving within the cancer context. The findings demonstrate that caregiver health literacy is multidimensional, includes a broad range of individual and interpersonal elements, and is influenced by broader healthcare system and community factors. These results provide guidance for the development of: caregiver health literacy measurement tools; strategies for improving health service delivery, and; interventions to improve caregiver health literacy.
照顾者在照顾被诊断患有癌症的患者方面发挥着至关重要的作用。然而，对于照顾者查找、理解、评估和利用信息以改善健康结果的能力，我们了解甚少。该研究旨在构建一个描述癌症照顾者健康素养要素的概念模型。研究人员与13名照顾者、13名癌症患者以及11名医疗服务提供者/政策制定者举办了6次概念映射研讨会。采用了迭代式混合方法来分析和综合研讨会上的数据，并生成概念模型。从参与者在概念映射研讨会上提出的279条陈述中，确定了6个主要主题和17个子主题。主要主题包括：信息获取、信息理解、与医疗服务提供者的关系、与受照顾者的关系、应对照顾挑战以及支持系统。该研究通过识别癌症背景下照顾行为所特有的因素，扩展了对健康素养的概念化认识。研究结果表明，照顾者健康素养是多维度的，包括广泛的个人和人际因素，并且受到更广泛的医疗系统和社区因素的影响。这些结果为以下方面的发展提供了指导：照顾者健康素养测量工具；改善医疗服务提供的策略；以及提高照顾者健康素养的干预措施。
