Delle Fave Antonella, Bassi Marta, Allegri Beatrice, Cilia Sabina, Falautano Monica, Goretti Benedetta, Grobberio Monica, Minacapelli Eleonora, Pattini Marianna, Pietrolongo Erika, Valsecchi Manuela, Amato Maria Pia, Lugaresi Alessandra, Patti Francesco
Department of Pathophysiology and Transplantation, Università degli Studi di Milano, Milan, Italy.
Department of Biomedical and Clinical Sciences "L.Sacco", Università degli Studi di Milano, Milan, Italy.
Front Psychol. 2017 Dec 20;8:2216. doi: 10.3389/fpsyg.2017.02216. eCollection 2017.
The experience of persons with multiple sclerosis (MS) and their caregivers is usually investigated in terms of emotional distress and health-related quality of life, while well-being indicators remain largely underexplored. In addition, findings are often interpreted from the clinical perspective, neglecting socio-cultural aspects that may crucially contribute to individuals' functioning. At the methodological level, most studies rely on scaled instruments, not allowing participants to freely express their needs and resources. Based on the bio-psycho-social perspective endorsed by the International Classification of Functioning, well-being indicators were investigated among 62 persons with MS (PwMS), their 62 caregivers and two control groups, matched by age and gender. Participants completed the Positive Affect Negative Affect Schedule (PANAS), the Satisfaction with Life Scale (SWLS), and the Eudaimonic and Hedonic Happiness Investigation instrument (EHHI). EHHI provides information on participants' happiness, goals and meanings through scaled and open-ended questions, contextualized within major life domains. No relevant differences emerged among PwMS and caregivers, compared with the respective control groups, as concerns life domains associated with happiness, goals and meaning. Participants across groups prominently mentioned family, highlighting its intrinsic value and its relevance as a sharing context; health did not represent a major theme for PwMS; community, society and religion/spirituality issues were substantially neglected by all participants. PwMS and caregivers reported lower levels of positive affect than their control groups, while no substantial differences emerged for negative affect, happiness and meaningfulness levels in life and across most domains. Results suggest that the experience of MS is associated with well-being in relevant life domains, such as family and close relationships. Although PwMS and caregivers identified a lower number of goals and meaning-related opportunities compared to control groups, they showed a positive adjustment to disease through the development of personal and family resources. These assets are often undervalued by health professionals and social institutions, while they could be fruitfully exploited through the active involvement of PwMS and their families as expert and exemplary informants in initiatives aimed at promoting the well-being of individuals and communities.
多发性硬化症（MS）患者及其照料者的经历通常是从情绪困扰和与健康相关的生活质量方面进行调查的，而幸福感指标在很大程度上仍未得到充分探索。此外，研究结果往往是从临床角度进行解读的，忽视了可能对个体功能产生关键影响的社会文化方面。在方法层面，大多数研究依赖于量表工具，不允许参与者自由表达他们的需求和资源。基于《国际功能、残疾和健康分类》所认可的生物 - 心理 - 社会视角，对62名多发性硬化症患者（PwMS）、他们的62名照料者以及两个按年龄和性别匹配的对照组进行了幸福感指标调查。参与者完成了积极情感消极情感量表（PANAS）、生活满意度量表（SWLS）以及幸福主义和享乐主义幸福调查问卷（EHHI）。EHHI通过量表式和开放式问题，在主要生活领域的背景下，提供有关参与者的幸福、目标和意义的信息。与各自的对照组相比，在与幸福、目标和意义相关的生活领域方面，多发性硬化症患者和照料者之间未出现相关差异。各群体的参与者都显著提到了家庭，强调了其内在价值及其作为共享背景的相关性；健康并不是多发性硬化症患者的主要主题；社区、社会和宗教/精神性问题在所有参与者中都被大幅忽视。多发性硬化症患者和照料者报告的积极情感水平低于他们的对照组，而在消极情感、生活中的幸福和意义水平以及大多数领域方面未出现实质性差异。结果表明，多发性硬化症的经历与家庭和亲密关系等相关生活领域的幸福感有关。尽管与对照组相比，多发性硬化症患者和照料者确定的目标和与意义相关的机会较少，但他们通过发展个人和家庭资源对疾病表现出了积极的适应。这些资产往往被健康专业人员和社会机构低估，而通过让多发性硬化症患者及其家庭作为专家和典范信息提供者积极参与旨在促进个人和社区幸福的倡议，这些资产可以得到有效利用。
