Abreu Liliana, Nunes João Arriscado, Taylor Peter, Silva Susana
i3S-Instituto de Investigação e Inovação em Saúde, Universidade do Porto, Porto, Portugal.
ISPUP-EPIUnit, Instituto de Saúde Pública, Universidade do Porto, Porto, Portugal.
Health Soc Care Community. 2018 Jan;26(1):90-101. doi: 10.1111/hsc.12465. Epub 2017 Jun 22.
This study embraces a patient-centred and narrative-oriented notion of health literacy, exploring how social networks and personal experiences constitute distributed health literacy (DHL) by mapping out health literacy mediators of each individual and how they enable self-management skills and knowledge of health conditions. Semi-structured interviews with 26 patients with type 2 diabetes were conducted in a Primary Care Center of Porto (Portugal) from October 2014 to December 2015. Data were collected based on McGill Illness Narrative Interview (MINI). Following the grounded theory, interviews were analysed as case-based and process-tracing-oriented. Three awareness narratives emerged: (i) a narrative of minimisation revealing minimal impact of diabetes in patients' lives and daily routines, resignation towards "inevitable" consequences of the diagnosis and dependence of a large network of health literacy mediators; (ii) a narrative of empathy, where patients tended to mention readjustments in their lives by following medical recommendations regarding medication without criticism and with few health literacy mediators; (iii) a narrative of disruption, with patients highlighting the huge impact of diabetes on their lives and their individual responsibility and autonomy with respect to the management of diabetes and the search for alternatives to medication, relying on a very restrictive network of mediators. Exploring meanings given to diagnosis, identifying health mediators and analysing the structure of social networks can contribute to understand the distributed nature of health literacy. Assessing DHL can assist health professionals and those providing care in the community in promoting health literacy and providing models for a more patient-centred health system.
本研究采用以患者为中心、以叙事为导向的健康素养概念，通过描绘每个人的健康素养中介因素，探索社交网络和个人经历如何构成分布式健康素养（DHL），以及这些中介因素如何促进自我管理技能和健康状况知识。2014年10月至2015年12月期间，在葡萄牙波尔图的一家初级保健中心对26名2型糖尿病患者进行了半结构化访谈。数据收集基于麦吉尔疾病叙事访谈（MINI）。按照扎根理论，访谈分析以个案为基础、以过程追踪为导向。出现了三种认知叙事：（i）一种最小化叙事表明糖尿病对患者生活和日常活动影响极小，对诊断“不可避免”的后果逆来顺受，依赖大量健康素养中介因素网络；（ii）一种共情叙事是患者倾向于提及通过遵循药物治疗方面的医学建议在生活中进行调整，但没有批评意见，且健康素养中介因素很少；（iii）一种扰乱叙事是患者强调糖尿病对其生活的巨大影响以及他们在糖尿病管理和寻找药物替代方法方面的个人责任和自主性，并依赖一个非常有限制性的中介因素网络。探索赋予诊断的意义、识别健康中介因素以及分析社交网络结构有助于理解健康素养的分布式本质。评估分布式健康素养可帮助卫生专业人员和社区护理提供者提高健康素养，并为更以患者为中心的卫生系统提供模式。
