Ando Hikari, Cousins Rosanna, Young Carolyn A
The Walton Centre NHS Foundation Trust, Liverpool, UK.
Department of Psychology, Liverpool Hope University, Liverpool, UK.
Disabil Rehabil. 2022 Jun;44(12):2752-2762. doi: 10.1080/09638288.2020.1846797. Epub 2020 Nov 23.
To identify influential factors for quality of life (QoL) among individuals with motor neurone disease (MND) and explore how regulatory flexibility and psychological flexibility may contribute towards maintaining and improving QoL.
Semi-structured interviews were conducted with 26 individuals with MND. Thematic analysis, using both inductive and deductive analyses, was employed to examine subjective QoL in view of previous understanding of QoL.
Four factors were important for the QoL of participants: perceived illness prognosis, sense of self, concerns for significant others, and life to enjoy. These factors reflected psychological stress caused by MND, the participant's value system, and their beliefs about life. In optimising QoL, both regulatory flexibility and psychological flexibility were essential to maintain and enhance QoL. Often, regulatory flexibility was perceived among those employing a mindful approach, and psychological flexibility was found to involve savouring positive experiences.
People with MND reported that seeking ways to both maintain and enhance their QoL is crucial, and that this may be accomplished by increasing flexibility through mindfulness and savouring. (171/200 words)Implications for rehabilitationPeople with motor neurone disease (MND) seek to maintain quality of life (QoL) following changes caused by the condition, whilst attempting to enhance QoL by maximising their positive experiences.Regulatory flexibility is essential to maintain QoL and it was closely associated with mindful approach so that MND is not perceived as an inevitable threat to QoL.Psychological flexibility was found to enhance QoL and it involves savouring positive experiences, while abandoning fault-finding of the current situation.Positive inter-personal interactions can encourage people with MND to engage with mindfulness and savouring for favourable outcomes in terms of QoL; current support services should orient towards both mindfulness and savouring.
确定运动神经元病（MND）患者生活质量（QoL）的影响因素，并探讨调节灵活性和心理灵活性如何有助于维持和改善生活质量。
对26名MND患者进行了半结构式访谈。采用归纳和演绎分析相结合的主题分析法，根据先前对生活质量的理解来审视主观生活质量。
四个因素对参与者的生活质量很重要：感知到的疾病预后、自我意识、对重要他人的担忧以及享受生活。这些因素反映了MND引起的心理压力、参与者的价值体系以及他们对生活的信念。在优化生活质量方面，调节灵活性和心理灵活性对于维持和提高生活质量都至关重要。通常，在采用正念方法的人中能察觉到调节灵活性，而心理灵活性则涉及品味积极体验。
MND患者报告称，寻求维持和提高生活质量的方法至关重要，这可以通过正念和品味来增加灵活性来实现。（171/200字）
对康复的启示
运动神经元病（MND）患者在病情导致的变化后寻求维持生活质量（QoL），同时试图通过最大化积极体验来提高生活质量。
调节灵活性对于维持生活质量至关重要，并且与正念方法密切相关，这样MND就不会被视为对生活质量的必然威胁。
心理灵活性被发现可以提高生活质量，它涉及品味积极体验，同时摒弃对当前状况的挑剔。
积极的人际互动可以鼓励MND患者参与正念和品味，以获得生活质量方面的良好结果；当前的支持服务应同时面向正念和品味。
