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首页> 外文期刊>Qualitative health research >Experience of Being Young With Psoriasis: Self-Management Support Needs
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Experience of Being Young With Psoriasis: Self-Management Support Needs

机译：与牛皮癣的年轻人的经验：自我管理支持需求

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摘要

Psoriasis is a long-term condition with a possibly cumulative life course impairment. Young people struggle to minimize its effects on appearance and functioning. To date, the self-management needs of adolescents suffering from psoriasis have been underinvestigated. Using focus groups and individual interviews, we present an interpretive description of young people's experiences of living with psoriasis, the challenges they face, and the support they need to relieve suffering and come to terms with their condition. This process is characterized by loneliness, the self-imposition of limitations, and the lack of personalized knowledge and communication skills to manage the impact of disease and society's reactions. Our study provides insight into needs of early interventions tailored to address condition, role, and emotional management, involving parent education, peer support, storytelling, and roles for professionals. We argue that further research should involve young people, their parents, and professionals in the development and evaluation of interventions.
机译：牛皮癣是一种长期条件，具有可能累积的寿命障碍。年轻人挣扎以尽量减少其对外观和功能的影响。迄今为止，患有牛皮癣的青少年的自我管理需求受到了投入。使用焦点小组和个人访谈，我们展示了年轻人与牛皮癣生活的经历的解释性描述，他们面临的挑战，以及他们需要缓解痛苦并通过其状况来实现的支持。这个过程的特点是孤独，自我纠纷的限制，以及缺乏个性化的知识和沟通技巧来管理疾病和社会的反应的影响。我们的研究提供了对适合解决条件，角色和情感管理的早期干预的需要，涉及父母教育，同行支持，讲故事以及专业人士的角色。我们认为，进一步的研究应涉及年轻人，父母和专业人士在开发和评估干预方面。

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