1 Aarhus University Hospital, Aarhus, Denmark.
2 Aarhus University, Aarhus, Denmark.
Qual Health Res. 2018 Jan;28(1):73-86. doi: 10.1177/1049732317737311.
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.
银屑病是一种长期存在的疾病，其对生活可能会造成累积性损害。年轻人努力将其对外观和功能的影响降到最低。迄今为止，患有银屑病的青少年的自我管理需求尚未得到充分研究。本研究通过焦点小组和个人访谈，以阐释性描述的方式呈现了年轻人患银屑病后的生活体验、所面临的挑战，以及缓解痛苦和接受病情所需的支持。这一过程的特点是孤独、自我限制，以及缺乏个性化的知识和沟通技巧来管理疾病的影响和社会的反应。本研究深入了解了早期干预的需求，这些干预旨在针对病情、角色和情绪管理，包括家长教育、同伴支持、讲故事和专业人员的角色。我们认为，进一步的研究应该让年轻人、他们的父母和专业人员参与干预措施的制定和评估。
