Daae Elisabeth, Feragen Kristin Billaud, Sitek Jan C, von der Lippe Charlotte
Center for Rare Disorders, Oslo University Hospital HF, Oslo, Norway.
Department of Dermatology, Oslo University Hospital HF, Oslo, Norway.
Health Psychol Behav Med. 2022 Apr 5;10(1):335-356. doi: 10.1080/21642850.2022.2053685. eCollection 2022.
: The ichthyoses are a group of genetic skin disorders, characterized by excessive amounts of dry, thickened skin, which may be fragile, inelastic and prone to fissures and infection. Skin care is time consuming and demanding, and, usually performed by the parents. : We aimed to explore parental experience of caring for a child with ichthyosis, and collected data using semistructured interview, and thematic analysis. : Our analysis revealed four main themes: Parents' and others' reactions to the child's difference, Experiences with healthcare services, It's all skin care, and Impact on relationships. : After birth of a child with severe ichthyosis, the parents experienced emotional distress and stigmatization due to the different appearance of the skin and healthcare professionals' lack of knowledge. Skin care caused pain in the child, was time consuming, and caused financial burdens. This study can guide healthcare professionals on where to focus future efforts in meeting the clinical and psychological needs of parents caring for a child with ichthyosis.
鱼鳞病是一组遗传性皮肤病，其特征是皮肤过度干燥、增厚，可能很脆弱、缺乏弹性，容易出现裂缝和感染。皮肤护理耗时且要求高，通常由父母进行。我们旨在探索照顾鱼鳞病患儿的家长的经历，并通过半结构化访谈和主题分析收集数据。我们的分析揭示了四个主要主题：父母及他人对孩子差异的反应、医疗服务体验、全是皮肤护理以及对人际关系的影响。患有严重鱼鳞病的孩子出生后，由于皮肤外观不同以及医疗专业人员缺乏相关知识，父母经历了情绪困扰和污名化。皮肤护理给孩子带来痛苦，耗时且造成经济负担。这项研究可以指导医疗专业人员在满足照顾鱼鳞病患儿的父母的临床和心理需求方面，未来应将精力集中在哪些方面。
