School of Psychology, University of Sydney, Sydney, Australia.
Brain and Mind Centre, University of Sydney, Sydney, Australia.
J Med Internet Res. 2021 Mar 2;23(3):e19309. doi: 10.2196/19309.
Mindfulness-based stress reduction is an efficacious treatment for people with chronic health problems; however, it is highly intensive and time-consuming, which is a barrier for service provision.
This study aims to develop an internet-delivered adapted version of mindfulness-based stress reduction for people with multiple sclerosis to make the intervention more accessible.
We co-designed a web-based mindfulness program with end users, that is, people with multiple sclerosis (N=19). Iterative feedback was also collected from a subsample of the initial group of end users (n=11), and the program was reviewed by experts (n=8).
We identified three main themes common to people with multiple sclerosis: dealing with uncertainty and fears for the future, grief and loss, and social isolation. These themes were incorporated into narratives throughout the program. People with multiple sclerosis who reviewed the program gave feedback that the program was relatable, feasible, and acceptable. Experts agreed that the program appropriately represented the main tenets of mindfulness. Iterative feedback was used to further refine the program.
The web-based mindfulness program that we developed was viewed positively by both experts and end users. The program reflects common concerns for people with multiple sclerosis and has the potential to meet important unmet psychological needs. A randomized controlled trial was planned to determine the efficacy of the program.
基于正念的压力减轻是治疗慢性健康问题人群的有效方法；然而，它非常密集且耗时，这是提供服务的一个障碍。
本研究旨在为多发性硬化症患者开发一种基于互联网的正念减压改编版，使干预措施更容易获得。
我们与最终用户（即多发性硬化症患者）共同设计了一个基于网络的正念计划（N=19）。还从最初的最终用户小组（n=11）中收集了迭代反馈，并且该计划由专家（n=8）进行了审查。
我们确定了多发性硬化症患者共有的三个主要主题：应对未来的不确定性和恐惧、悲伤和失落以及社会孤立。这些主题贯穿整个计划的叙述。审查该计划的多发性硬化症患者反馈说，该计划具有相关性、可行性和可接受性。专家们一致认为该计划恰当地代表了正念的主要原则。迭代反馈用于进一步完善该计划。
我们开发的基于网络的正念计划得到了专家和最终用户的积极评价。该计划反映了多发性硬化症患者的常见关注点，并且有可能满足重要的未满足的心理需求。计划进行随机对照试验以确定该计划的疗效。
