Parents' and carers’ views of topical corticosteroid use in childhood eczema: qualitative study of discussion threads in online forums
Eczema is very common, affecting 20% of children aged 5 years or younger at some point. It causes distress to children and their families because of itch and sleep disturbance. The treatments are emollients and topical corticosteroids but non-adherence is widespread and the main cause of treatment failure. Previous research has revealed ‘steroid phobia’ amongst parents/carers, but there is little understanding about the nature of their concerns. The internet is widely used for health information and peer support. In 2015, 50% of adults had searched for health information online in the previous 3 months and this proportion is higher amongst people aged under 40. We aimed to explore the understandings and concerns about topical corticosteroids amongst parents/carers of children with eczema who had posted messages in online forums.
A scoping review of online eczema resources identified two active UK-based forums: one eczema forum and one general parenting forum were chosen as most consistently active (i.e. relevant messages posted daily). Internal search functions for each forum identified discussion threads on topical corticosteroids. The first 100 search results for each were reviewed: relevant discussions were copied into Microsoft Word and exported into NVivo (version 10). Inductive thematic analysis identified codes and subsequent themes arising from the data. Ethics approval was granted by University of Southampton Faculty of Medicine Ethics Committee. Neither forum required registration to view posted messages. To protect anonymity, the forums have not been identified and data excerpts have been paraphrased.
Analysis of discussion threads highlighted three themes: beliefs about topical corticosteroids, uncertainty about use and conflicting advice. A general sense of cautiousness about topical corticosteroids with some confusion and a wide range of specific concerns were expressed. Some forum users attempted to reassure others that topical corticosteroids were safe and effective if used correctly. Many carers appeared to bring their uncertainties to the forum, asking questions about safety and duration of use, where and when to use creams and expressing confusion about the strength/potency of different products. There were also a striking number of reports of parents receiving conflicting advice from different health professionals, or conflicting advice from professionals compared with product information leaflets and trying to resolve this through asking advice from other forum users.
People appear to value the social support and group identity from online interaction with other parents/carers with similar experiences. Parents/carers share a wide range of concerns and uncertainties about topical-corticosteroids and seek advice from other forum users, particularly when they have received conflicting advice. This study highlights a novel and useful way of exploring people’s concerns on a health topic, which can complement primary qualitative research.