“It’s like the bad guy in a movie who just doesn’t die” Exploration of the impact of the relapsing-remitting cycle in eczema in young people: a secondary qualitative analysis of interview data

Problem

Eczema is a very common inflammatory skin condition, affecting more than 1 in 5 children and causing significant impact on quality of life. A popular belief is the concept of children ‘outgrowing eczema’, although for many the condition will persist into adulthood following a chronic relapsing and remitting course throughout their life. The impact of this popular belief of ‘outgrowing eczema’ on young people with eczema is unknown. The aim of this secondary analysis was to explore young people’s experiences of managing eczema to investigate the impact of the cyclical nature of the condition might have on their self-management of eczema.

Approach

We conducted a secondary inductive thematic analysis on transcripts of interviews originally carried out by HealthTalk.org. A total of 24 interviews were completed with young people with eczema, of whom 23 consented for a secondary analysis. The participants were mostly female (17 females and 6 males) ranging from 17 to 25 years of age and 15 of the participants had eczema all their lives. A coding schedule was iteratively developed through team discussions of emerging data from 9 transcripts and testing it with 3 randomly selected transcripts before applying the coding schedule to the remaining transcripts. Data handling was facilitated through use of NVivo 11.

Findings

Participants identified eczema as a long term remitting-recurring condition that was cyclical over their lifespan but also over the year, often triggered by stressful events. Routine was a facilitator in managing the condition and the symptoms but the cyclical nature also meant having to deal with the flare ups as they came. The cyclical nature of the condition had a high impact on their self-management including challenging the trial and error process of identifying triggers and finding successful routines. Accepting that eczema is a long- term condition even when being given different information that may have caused hope had substantial psychosocial impact. Some appeared to respond by adjusting their beliefs about treatment control instead of treatment cure.

Consequences

The young people’s experiences are at odds with the popular belief that children grow out of eczema. This had implications for their acceptance of the condition and their beliefs about and attitudes to long-term self-management as well as responses to recurrence. These findings highlight the need for managing expectations about the prognosis of eczema and changing the focus of the treatment from cure to control. Having strong understandings of their treatment and support in maintaining control of their skin condition could mitigate against the increasing disappointment that ‘growing out of it’ was not a helpful message for them.