在他人的帮助下维持正常生活:红斑狼疮适应过程中的促进因素和障碍的生活经验。

IF 2.5 3区 心理学 Q2 PSYCHOLOGY, CLINICAL Journal of Health Psychology Pub Date : 2024-11-22 DOI:10.1177/13591053241296190
Sofia Silva-Ribeiro, Sónia F Bernardes, Marta M Marques, Cristina A Godinho
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引用次数: 0

摘要

系统性红斑狼疮(SLE)对患者的生活质量有很大的负面影响。确定与系统性红斑狼疮适应相关的关键因素对于干预措施的制定至关重要,但目前还没有研究从系统性红斑狼疮患者的角度探讨疾病适应的促进或阻碍因素。在这项定性研究中,我们对葡萄牙成年系统性红斑狼疮患者(13 名女性)进行了 16 次半结构式访谈,以探讨他们认为的疾病适应的促进因素和阻碍因素。反思性主题分析显示,努力维持正常生活、乐观、坚持参与有意义的活动、获取可靠的疾病相关信息以及拥有支持性关系是系统性红斑狼疮适应的核心促进因素。主要障碍包括无法维持正常生活、过度活动、悲观、得不到支持或被污名化,以及无法获得可靠的疾病相关信息。这些发现揭示了旨在提高系统性红斑狼疮患者生活质量的社会心理和行为干预的潜在目标。
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Maintaining a sense of normality with the help of others: Lived experiences of facilitators and barriers to Lupus adjustment.

Systemic lupus erythematosus (SLE) has a high detrimental impact on individuals' quality of life. Identifying key factors associated with SLE adjustment is crucial for intervention development, yet there is no previous research exploring the perspectives of individuals with SLE regarding illness adjustment' facilitating or hindering factors. In this qualitative study, 16 individual semi-structured interviews with Portuguese adults with SLE (13 women) were conducted to explore perceived facilitators and barriers to illness adjustment. A reflexive thematic analysis revealed that efforts toward maintaining a normal life, optimism, keeping engaged in meaningful activities, accessing reliable illness-related information, and having supportive relationships were core facilitators of SLE adjustment. Main barriers included inability to maintain normality, engaging in excessive activity, pessimism, being unsupported or stigmatized, and not having access to reliable illness-related information. These findings unveil potential targets for psychosocial and behavioral interventions aimed at enhancing the quality of life for individuals with SLE.

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来源期刊
Journal of Health Psychology
Journal of Health Psychology PSYCHOLOGY, CLINICAL-
CiteScore
7.50
自引率
3.10%
发文量
81
期刊介绍: ournal of Health Psychology is an international peer-reviewed journal that aims to support and help shape research in health psychology from around the world. It provides a platform for traditional empirical analyses as well as more qualitative and/or critically oriented approaches. It also addresses the social contexts in which psychological and health processes are embedded. Studies published in this journal are required to obtain ethical approval from an Institutional Review Board. Such approval must include informed, signed consent by all research participants. Any manuscript not containing an explicit statement concerning ethical approval and informed consent will not be considered.
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