Wu Min, Zeng Sining, Zhang Yi, Liu Yanru, Li Bingbing, Yi Xuemei, Shi Yuling, Zhu Xiaoping
Department of Dermatology, Shanghai Skin Disease Hospital, Tongji University School of Medicine, Shanghai, 200443, People's Republic of China.
Institute of Psoriasis, Tongji University School of Medicine, Shanghai, 200443, People's Republic of China.
J Multidiscip Healthc. 2024 Apr 17;17:1653-1662. doi: 10.2147/JMDH.S458075. eCollection 2024.
Psoriasis is a chronic autoimmune inflammatory skin condition characterized by erythema, papules, and scales. It imposes a heavy psychological and social strain on both patients and their families. Surprisingly, there's limited research delving into the disease burden and coping strategies of spouses contending with psoriasis.
The objective is to explore the disease burden faced and coping strategies utilized by spouses of individuals living with psoriasis. This exploration aims to offer insights crucial for devising mental health support and intervention strategies.
The research methodology employed in this study was phenomenological, a qualitative approach. A total of fifteen spouses of patients with psoriasis were selected using an objective sampling method for in-depth, semi-structured interviews. Thematic analysis was then applied to the recorded interview data to derive meaningful themes.
This study has identified and analyzed three core themes concerning the disease burden and coping strategies of spouses of patients with psoriasis: Overwhelming disease burden; Lack of support system; Coping strategies (Problem - centered coping strategies: Proactive acquisition of disease knowledge; Active confrontation of illness - related issues; Behavioral habit alteration; and Emotional - centered coping strategies: Active acceptance and normalization; Passive acceptance and internalized stigma; Avoidance of disease - related problems).
This study adds valuable insights into comprehending the disease burden encountered by spouses of patients with psoriasis and sheds light on the coping strategies they employ. Healthcare providers should proactively recognize and address the burden experienced by spouses early on. Establishing a robust support network is crucial, and promoting adaptive coping strategies can significantly aid spouses in effectively navigating and managing the complexities associated with psoriasis.
银屑病是一种慢性自身免疫性炎症性皮肤病，其特征为红斑、丘疹和鳞屑。它给患者及其家庭带来了沉重的心理和社会压力。令人惊讶的是，针对银屑病患者配偶的疾病负担和应对策略的研究有限。
旨在探讨银屑病患者配偶所面临的疾病负担以及所采用的应对策略。这一探索旨在为制定心理健康支持和干预策略提供关键见解。
本研究采用的研究方法是现象学方法，即一种定性方法。采用客观抽样方法选取了15名银屑病患者的配偶进行深入的半结构化访谈。然后对记录的访谈数据进行主题分析，以得出有意义的主题。
本研究确定并分析了关于银屑病患者配偶的疾病负担和应对策略的三个核心主题：沉重的疾病负担；缺乏支持系统；应对策略（以问题为中心的应对策略：积极获取疾病知识；积极应对与疾病相关的问题；改变行为习惯；以及以情绪为中心的应对策略：积极接受并正常化；被动接受并内化耻辱感；回避与疾病相关的问题）。
本研究为理解银屑病患者配偶所面临的疾病负担提供了宝贵见解，并揭示了他们所采用的应对策略。医疗保健提供者应尽早主动认识并解决配偶所经历的负担。建立一个强大的支持网络至关重要，促进适应性应对策略可以显著帮助配偶有效应对和管理与银屑病相关的复杂性。
