Couture C, Brassard A, Brault-Labbé A
Centre de réadaptation Lucie-Bruneau, 2275, Laurier est, Montréal, H2H 2N8 Canada.
Département de psychologie, faculté des lettres et sciences, université de Sherbrooke, 2500, boulevard de l'Université, Sherbrooke, QC J1K 2R1 Canada.
Rev Neurol (Paris). 2014 Jun-Jul;170(6-7):416-24. doi: 10.1016/j.neurol.2013.12.003. Epub 2014 Mar 31.
Progressive neurological disorders require continual adaptation. People who maintain a better psychological balance in the face of the disease are those who find meaning in their experience. The ability to find a positive meaning in having multiple sclerosis (MS) is more common in people who are at the beginning of their disease or those who have few functional limitations (Pakenham, 2008). This qualitative study examines the process of meaning-making by people who are moderately to severely affected by MS.
Eight participants told the story of their experiences in individual semi-structured interviews. The verbatim transcripts were subjected to phenomenological analysis.
The results allowed the identification of the essential elements that shape the experience of meaning-making. The adaptation happens in two main areas: (1) limiting the impact of specific symptoms, and (2) investing in activities that combine meaningful relationships and the feeling of being useful. Meaning is developed in the search for a new existential balance that reconciles creative tensions, particularly in the oscillation between letting go and determination. The process of meaning-making is distributed along a continuum of strategies that allows one to act as if nothing had happened, act within the limits of the disease, act despite the disease, act in new ways because of the disease, or act thanks to the disease.
Understanding the process of meaning-making while adjusting to MS can allow the identification of possible interventions to better accompany people who are most severely affected by MS in their adaptation to the disease.
进行性神经疾病需要持续的适应。在面对疾病时保持更好心理平衡的人是那些能从自身经历中找到意义的人。在多发性硬化症（MS）患者中，能从患病经历中找到积极意义的能力在疾病初期患者或功能受限较少的患者中更为常见（帕克南，2008年）。这项定性研究考察了中重度MS患者的意义建构过程。
八名参与者在个人半结构化访谈中讲述了他们的经历。逐字记录的访谈内容进行了现象学分析。
研究结果确定了构成意义建构体验的关键要素。适应发生在两个主要方面：（1）限制特定症状的影响，（2）投入到能兼顾有意义人际关系和有用感的活动中。意义在寻求新的存在平衡的过程中得以发展，这种平衡协调了创造性的紧张关系，尤其是在放手与决心之间的摇摆。意义建构过程分布在一系列策略连续统中，这些策略能让人表现得若无其事、在疾病限制范围内行动、不顾疾病行动、因疾病以新方式行动或借助疾病行动。
了解适应MS过程中的意义建构过程，有助于确定可能的干预措施，以便更好地陪伴中重度MS患者适应疾病。
