Paynter Camille, Mathers Susan, Gregory Heidi, Vogel Adam P, Cruice Madeline
Department of Audiology and Speech Pathology, University of Melbourne, 550 Swanston Street, Melbourne, VIC 3010, Australia.
Calvary Health Care Bethlehem, 152 Como Parade West, Parkdale, VIC 3195, Australia.
Healthcare (Basel). 2022 Jul 24;10(8):1371. doi: 10.3390/healthcare10081371.
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.
运动神经元病（MND）领域中不断增加的关于信息寻求和决策的文献尚未探讨健康素养的影响。健康素养与人们获取、理解和使用健康信息的技能相关，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这一概念来分析纵向访谈数据，从而更好地了解受MND影响的人们如何参与医疗保健。我们采用最大差异抽样法，从一家专业MND诊所招募了19名MND患者和15名护理人员，并对他们进行了半结构化访谈。访谈记录使用健康素养行为框架进行演绎编码。分析采用基于矩阵的方法对纵向数据进行主题分析。MND患者和护理人员会根据自己的优先事项和态度寻求细致入微的信息。信息的获取受到感知相关性的影响，并且会随时间而变化。时间让人有机会思考和理解所提供信息的重要性。研究结果表明，当信息和咨询能够适应他们的沟通需求时，MND患者和护理人员会从中受益。结果凸显了尽早了解并满足MND患者及其护理人员的沟通需求、个人偏好以及对信息的情感准备程度的潜在益处。
