It’s more than just lubrication of the skin: parents’ experiences of caring for a child with ichthyosis

Abstract

Background: 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.Methods: We aimed to explore parental experience of caring for a child with ichthyosis, and collected data using semistructured interview, and thematic analysis.Results: 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.Conclusion: 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.

Keywords

• Ichthyosis
• skin disorder
• parents
• qualitative
• rare disease