Department of Health Studies, Faculty of Social Sciences, University of Stavanger, Stavanger, Norway.
J Clin Nurs. 2013 Feb;22(3-4):331-8. doi: 10.1111/j.1365-2702.2012.04304.x. Epub 2012 Dec 13.
To describe the self-reported life situation of users totally dependent on home mechanical ventilation (HMV) after tracheotomy and to identify factors associated with user satisfaction.
HMV users are a small but growing group in society and among the most vulnerable individuals with chronic disabilities. The participants in the present study belong to an even more susceptible minority of this group, as they require round the clock ventilation at home through a tracheostomy, implying the need for continuous care. Their testimonies are important for the generation of new knowledge.
A qualitative design using interviews.
Individual interviews were conducted with six participants and analysed by qualitative content analysis.
The main theme that emerged different individual needs require a range of approaches was based on three sub-themes: (1) Tailored information (2) Sensitivity in decision-making and (3) Building trust and confidence. Information was perceived as crucial and participants described different experiences of receiving optimal information to not receiving information at all. Successful collaboration was perceived when the user was given the opportunity to participate in decision-making about her/his treatment and care, where to live and how to organise daily life. Trust and confidence in the caregivers were important.
The participants highlighted the need for strategies to improve satisfaction. Their experiences varied depending on age, where they lived, who they encountered in the healthcare system and the level of family support. Our findings suggest that patients who perceive themselves as well informed at an early stage are more satisfied with treatment, decisions about their tracheotomy and their life situation.
There is a lack of knowledge among healthcare providers, thus tailored, high competence and guidelines are required.
描述完全依赖经气管切开术的家庭机械通气（HMV）的用户的自我报告生活状况，并确定与用户满意度相关的因素。
HMV 用户是社会中一小部分但不断增长的群体，也是最脆弱的慢性残疾人群体之一。本研究的参与者属于该群体中更易受影响的少数群体，因为他们需要通过气管切开术在家中进行 24 小时通气，这意味着需要持续护理。他们的证言对于新知识的产生很重要。
采用访谈的定性设计。
对 6 名参与者进行了个体访谈，并进行了定性内容分析。
出现的主要主题是不同的个体需求需要一系列方法，这基于三个子主题：（1）量身定制的信息；（2）决策中的敏感性；（3）建立信任和信心。信息被认为是至关重要的，参与者描述了不同的经验，即获得最佳信息和根本没有获得信息。当用户有机会参与关于其治疗和护理、居住地点以及如何组织日常生活的决策时，被认为是成功的合作。对护理人员的信任和信心很重要。
参与者强调了需要制定策略来提高满意度。他们的经历因年龄、居住地、在医疗保健系统中遇到的人以及家庭支持的水平而异。我们的研究结果表明，那些早期自我感觉得到充分信息的患者对治疗、气管切开术决策和生活状况的满意度更高。
医疗保健提供者缺乏知识，因此需要量身定制、高能力和指南。
