Living With Multiple Sclerosis: The Rainbow of Inspiring Experiences and Resilience in the Face of the Disease

IF 3 3区医学 Q2 HEALTH CARE SCIENCES & SERVICES

Health Expectations Pub Date : 2024-10-02 DOI:10.1111/hex.70044

Leily Zare, Nahid Dehghan Nayeri, Fatemeh Bahramnezhad, Arezoo Rasti

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引用次数: 0

Abstract

Introduction

Multiple sclerosis (MS), a leading cause of disability in young adults worldwide, including in Iran, affects their whole life so common care is no longer effective. In this regard, context-based approaches should be considered for a holistic care delivery that accords with the patients' inputs. We aimed to explore patients' understanding of MS and their personal experiences of living with this disease.

Methods

A qualitative descriptive study was conducted. The data were collected through in-depth, semi-structured interviews with 17 patients. These patients were selected using a purposive sampling method, and the data were analyzed using a conventional content analysis approach.

Findings

Three main categories and nine subcategories were identified: Thunder and Lightning strike in the form of Displeasure, Social wrong beliefs, Experiences of Constraints, Interference with Life Stages and Dark Spots on the Horizon of the Future; Subtle Beam consisting of Extrinsic Light Radiation, Reflection of Individual Effort and Formation of a Rainbow by Resilience and Hope for a Bright Future.

Conclusion

By offering multidimensional support, patients reported a shift from fear to a vibrant life. Although research often focuses on the negative aspects of MS, this study recognizes both positive and negative aspects. These findings can contribute to future interventional research.

Patient or Public Contribution

During the explanation of research goals and consent acquisition, participants were reminded that sharing their experiences could provide valuable insights benefiting others coping with or at risk of the same disease. Additionally, during data analysis, codes extracted were reviewed and improved with active participant involvement.

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与多发性硬化症共存：多发性硬化症患者的生活：彩虹般的励志经历和面对疾病的坚韧不拔的精神》（The Rainbow of Inspiring Experiences and Resilience in the Face of the Disease）。

导言：多发性硬化症（MS）是包括伊朗在内的全世界青壮年致残的主要原因之一，影响患者的一生，因此普通护理已不再有效。在这方面，应考虑基于背景的方法，以提供符合患者意见的整体护理。我们的目的是探索患者对多发性硬化症的理解以及他们与这种疾病共同生活的亲身经历：方法：我们开展了一项定性描述性研究。数据是通过对 17 名患者进行深入的半结构化访谈收集的。这些患者是通过有目的的抽样方法挑选出来的，并采用传统的内容分析法对数据进行了分析：确定了三个主要类别和九个子类别：雷电打击的形式包括不满、社会错误信念、受限体验、人生阶段的干扰和未来地平线上的黑点；微妙的光束包括外在的光辐射、个人努力的反映以及通过复原力和对美好未来的希望形成彩虹：结论：通过提供多方面的支持，患者报告说，他们从恐惧转向了充满活力的生活。虽然研究通常侧重于多发性硬化症的消极方面，但本研究同时认识到了积极和消极的方面。这些发现有助于未来的干预性研究：在解释研究目标和征得同意时，我们提醒参与者，分享他们的经历可以提供有价值的见解，使其他患有相同疾病或面临相同风险的人受益。此外，在数据分析过程中，在参与者的积极参与下，对提取的代码进行了审查和改进。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Health Expectations 医学-公共卫生、环境卫生与职业卫生

CiteScore

5.20

自引率

9.40%

发文量

251

审稿时长

>12 weeks

期刊介绍： Health Expectations promotes critical thinking and informed debate about all aspects of patient and public involvement and engagement (PPIE) in health and social care, health policy and health services research including: • Person-centred care and quality improvement • Patients'' participation in decisions about disease prevention and management • Public perceptions of health services • Citizen involvement in health care policy making and priority-setting • Methods for monitoring and evaluating participation • Empowerment and consumerism • Patients'' role in safety and quality • Patient and public role in health services research • Co-production (researchers working with patients and the public) of research, health care and policy Health Expectations is a quarterly, peer-reviewed journal publishing original research, review articles and critical commentaries. It includes papers which clarify concepts, develop theories, and critically analyse and evaluate specific policies and practices. The Journal provides an inter-disciplinary and international forum in which researchers (including PPIE researchers) from a range of backgrounds and expertise can present their work to other researchers, policy-makers, health care professionals, managers, patients and consumer advocates.