Bogosian Angeliki, Morgan Myfanwy, Bishop Felicity L, Day Fern, Moss-Morris Rona
a School of Health Sciences , City, University of London , London , UK.
b Psychology Department, Institute of Psychiatry, Psychology & Neuroscience, King's College London , London , UK.
Psychol Health. 2017 Mar;32(3):343-360. doi: 10.1080/08870446.2016.1268691. Epub 2016 Dec 27.
We examined cognitive and behavioural challenges and adaptations for people with progressive multiple sclerosis (MS) and developed a preliminary conceptual model of changes in adjustment over time.
Using theoretical sampling, 34 semi-structured interviews were conducted with people with MS. Participants were between 41 and 77 years of age. Thirteen were diagnosed with primary progressive MS and 21 with secondary progressive MS. Data were analysed using a grounded theory approach.
Participants described initially bracketing the illness off and carrying on their usual activities but this became problematic as the condition progressed and they employed different adjustment modes to cope with increased disabilities. Some scaled back their activities to live a more comfortable life, others identified new activities or adapted old ones, whereas at times, people disengaged from the adjustment process altogether and resigned to their condition. Relationships with partners, emotional reactions, environment and perception of the environment influenced adjustment, while people were often flexible and shifted among modes.
Adjusting to a progressive condition is a fluid process. Future interventions can be tailored to address modifiable factors at different stages of the condition and may involve addressing emotional reactions concealing/revealing the condition and perceptions of the environment.
我们研究了进行性多发性硬化症（MS）患者的认知和行为挑战及适应情况，并建立了一个关于随时间调整变化的初步概念模型。
采用理论抽样法，对34名MS患者进行了半结构式访谈。参与者年龄在41至77岁之间。其中13人被诊断为原发性进行性MS，21人被诊断为继发性进行性MS。采用扎根理论方法对数据进行分析。
参与者最初描述会将疾病搁置一旁，继续日常活动，但随着病情进展，这变得困难起来，于是他们采用不同的调整方式来应对日益增加的残疾。一些人减少活动以过上更舒适的生活，另一些人找到了新的活动或调整了旧有活动，而有时，人们会完全脱离调整过程，听天由命。与伴侣的关系、情绪反应、环境以及对环境的认知影响着调整过程，同时人们通常很灵活，会在不同方式之间转换。
适应进行性疾病是一个动态变化的过程。未来的干预措施可以针对疾病不同阶段的可改变因素进行调整，可能包括处理隐藏/披露病情的情绪反应以及对环境的认知。
