Abstract：
The growing body of information-seeking and decision-making literature in motor neurone disease (MND) has not yet explored the impact of health literacy. Health literacy relates to the skills people have to access, understand, and use health information and is influenced by motivation to engage with healthcare. We aimed to better understand how people affected by MND engage in healthcare by examining longitudinal interview data using the construct of health literacy. Semi-structured interviews were conducted with 19 persons living with MND and 15 carers recruited from a specialist MND clinic using maximum variation sampling. Transcripts were deductively coded using a framework of health literacy behaviours. The analysis used a matrix-based approach for thematic analysis of longitudinal data. People living with MND and carers sought nuanced information dependent on their priorities and attitudes. Information uptake was influenced by perceived relevancy and changed over time. Time allowed opportunity to reflect on and understand the significance of information provided. The findings indicate that persons living with MND and carers benefit when information and consultations are adapted to meet their communication needs. The results highlight the potential benefits of gaining an early understanding of and accommodating the communication needs, personal preferences, and emotional readiness for information for persons living with MND and their carers.
摘要：
运动神经元疾病（MND）中越来越多的信息寻求和决策文献尚未探索健康素养的影响。健康素养与人们必须获得的技能有关，理解,并使用健康信息，并受到参与医疗保健的动机的影响。我们旨在通过使用健康素养的构建来检查纵向访谈数据，从而更好地了解受MND影响的人们如何参与医疗保健。使用最大变异抽样，对19名患有MND的人和从MND专科诊所招募的15名护理人员进行了半结构化访谈。使用健康素养行为框架对成绩单进行演绎编码。分析使用基于矩阵的方法对纵向数据进行主题分析。与MND生活在一起的人和照顾者根据他们的优先事项和态度寻求细微差别的信息。信息摄取受到感知相关性的影响，并随着时间的推移而变化。时间允许机会反思和理解所提供信息的重要性。调查结果表明，如果对信息和咨询进行调整以满足其交流需求，则MND患者和护理人员将从中受益。结果突出了早期了解和适应沟通需求的潜在好处，个人喜好,以及为MND患者及其看护人提供信息的情感准备。
