School of Medicine, University of Nottingham, Nottingham, UK.
School of Psychology, University of Lincoln, Lincoln, UK.
Disabil Rehabil. 2021 Nov;43(22):3135-3146. doi: 10.1080/09638288.2020.1734105. Epub 2020 Mar 14.
To provide an overview of the experiences and needs of patients adjusting to life after receiving a diagnosis of secondary progressive multiple sclerosis (SPMS).
We conducted a meta-ethnographic synthesis of qualitative studies on the experiences of transition to SPMS, based on a systematic literature search of CINAHL, PsycINFO, Embase, MEDLINE, and Web of Science. Identified studies were quality-appraised using a critical appraisal checklist, and individual findings synthesised inductively.
The synthesis included 12 articles with 144 people with SPMS. Adjusting to SPMS transition encompassed a variety of reactions and coping strategies. Successful adjustment was associated with accepting and adapting coping strategies, and availability of social support and relationships. Clinical services increased uncertainty around adjustment where patients felt clinicians were not transparent with them about their changing diagnosis.
People adjust to SPMS in different ways, with the success of adjustment influenced by a patient's primary coping mechanism. Coping mechanisms are determined by pre-existing individual differences, alongside engagement with, and quality of, social support networks and activities. Services should ensure that people are provided with informational support about their illness progression, and emotional support concerning coping strategies, social networks, and physical activity, as these are key determinants of successful adjustment.IMPLICATIONS FOR REHABILITATIONAdjusting to secondary progressive multiple sclerosis is a difficult and stressful time for patients.Coping strategies patients use, their support network and their activity levels are key determinants of successful adjustment.Clinicians should be open with patients about their assessment of their changing diagnosis, rather than trying to avoid upsetting the patient by withholding information.Clinical services should be proactive in supporting patients during adjustment with learning positive coping strategies, and maintaining or increasing social relationships and activity levels.
概述患者在被诊断为继发进展型多发性硬化症（SPMS）后适应生活的经验和需求。
我们对关于 SPMS 过渡体验的定性研究进行了元人种学综合分析，基于对 CINAHL、PsycINFO、Embase、MEDLINE 和 Web of Science 的系统文献检索。使用批判性评价检查表对确定的研究进行质量评价，并对个体发现进行归纳综合。
综合分析纳入了 12 篇文章，共 144 名 SPMS 患者。适应 SPMS 过渡包括各种反应和应对策略。成功调整与接受和适应应对策略以及社会支持和关系的可用性有关。临床服务增加了调整的不确定性，患者感到临床医生对他们不断变化的诊断不透明。
人们以不同的方式适应 SPMS，调整的成功受患者主要应对机制的影响。应对机制取决于个体差异以及与社会支持网络和活动的参与度和质量。服务机构应确保向患者提供有关疾病进展的信息支持，以及有关应对策略、社交网络和身体活动的情感支持，因为这些是成功调整的关键决定因素。
适应继发进展型多发性硬化症对患者来说是一个困难和有压力的时期。患者使用的应对策略、支持网络和活动水平是成功调整的关键决定因素。临床医生应与患者坦诚相待，告知他们对患者病情变化的评估，而不是试图通过隐瞒信息来避免让患者感到不安。临床服务机构应积极支持患者在调整期间学习积极的应对策略，维持或增加社交关系和活动水平。
