Method
Participants were recruited through mail-outs from 16 GP surgeries and opportunistic recruitment in three NHS hospitals. Participants needed to have a child aged 0–12 years with diagnosed eczema who had one or more eczema prescriptions in the previous 12 months, and to be able to communicate in English. Participants received an invitation pack, including an information sheet, and a reply slip to express interest in the study. To gather a diverse range of views and cover a range of developmental stages, participants were purposively sampled on the child’s age, sex, eczema severity, and geographical location. Selected participants were invited to a face-to-face, semi-structured interview and consented before the interview. All interviews were conducted at participants’ homes between March and July 2018 by a female research psychologist experienced in qualitative research. Interviews explored parents’/carers’ views and experiences of managing and co-managing their child’s eczema, treatment barriers/facilitators, and terminology used for topical treatments (see Supplementary Box S1 for topic guide). Interviewees received a £10 voucher. Recruitment continued until saturation was reached for main themes.
Interviews lasted 45–60 minutes, were audiorecorded, transcribed verbatim, and analysed using inductive thematic analysis.26,27 Data were managed in NVivo 12. A coding manual was created with audit trail. Constant comparison between transcripts, codes, and themes ensured coherency, and that diverse cases were identified. Analysis was iterative, with codes and themes updated following team discussion and stakeholder consultation. This process facilitated a richer and more nuanced understanding of the data by including the perspectives of dermatology and non-dermatology specialists and people with and without lived experience.
As the focus was on understanding parents’/carers’ experiences of managing/co-managing eczema with their child, the analysis focused predominantly on barriers and facilitators to eczema management to inform the intervention. Results presented here focus on novel findings that extend those in the systematic review.
Results
Thirty parents/carers (all female) were interviewed. The majority of interviewees (n = 28; 93%) were recruited through primary care. See Table 1 for child characteristics.
Table 1. Characteristics of children of parents/carers taking part in the interviews
Parents/carers typically referred to topical treatments as ‘creams’, irrespective of their specific type (gel/ointment/lotion/cream). Emollients were generally called just ‘creams’, ‘emollient creams’, or by their brand name. Only a few participants called them ‘emollients’ or ‘moisturisers’. TCS were usually called ‘steroid creams’, ‘steroids’, or occasionally by product name. One parent/carer called them ‘strong creams’ when discussing them with her child.
Thematic analysis identified six key themes, listed below:
a) Incomplete knowledge about eczema and its treatments: most parents/carers described having received little information explaining eczema and its treatments. Several wanted more information, particularly hints and tips from other parents/carers. Several were unsure what caused eczema flare-ups. A couple wondered how puberty might affect eczema:
‘When her skin is changing due to teenage-hood … when she wants to start using make-up; does it interfere with eczema?’
(Parent/carer 29, 12-year-old daughter, moderate eczema)
A few parents/carers said they were not sure how best to use emollients, particularly whether they needed to be used regularly. One was unsure if they used them too much:
‘I stopped using [emollient] because it didn’t seem to flare up … if I’d kept using it all winter, would she not have flared up now? Or would she have flared up anyway … ?’
(Parent/carer 9, 18-month-old daughter, mild eczema)
A few discussed previously using TCS incorrectly or being uncertain about when or how to use them:
‘I didn’t know how much [TCS] to put on … I didn’t know what was right and wrong.’
(Parent/carer 5, 2-year-old daughter, moderate eczema)
b) Concerns and doubts about the safety and effectiveness of TCS and emollients: most parents/carers had concerns about TCS. Some described them as a necessary evil; they did not like them but knew they worked. Some worried about skin thinning. A couple tried to avoid using them and described this as a dilemma:
‘It was a constant battle between trying not to use them [TCS] and having to use them … Do we need [TCS] or can we get a grip of this without?’
(Parent/carer 26, 6-year-old daughter, moderate eczema)
Most parents/carers felt that emollients were effective in reducing itch and keeping control of eczema. However, a few were unconvinced or thought they worked less well over time:
‘It seems after a certain amount of time [emollients] … lose their magic.’
(Parent/carer 28, 5-year-old daughter, severe eczema)
c) Process of trial and error: most parents/carers described a process of trial and error to work out how best to manage their child’s eczema, which might relate to incomplete knowledge around eczema management. This process included: finding the right emollient, developing an emollient routine, and making changes to manage irritants and scratching. A few parents/carers described adapting their regimen over time as their child changed:
‘I have to think … what’s caused this [flare-up] to come on? … I just try and work it out as we go along.’
(Parent/carer 15, 6-year-old son, mild eczema)
Several expressed a desire to carry on as usual and to find a balance between managing their child’s eczema and leading a ‘normal’ life:
‘If we have a flare we’ll just deal with it at the end of the day … I’m not going to stop her from having a childhood …’
(Parent/carer 8, 8-year-old daughter, severe eczema)
d) Negative impact of eczema and its treatments on parents: most parents/carers described treatments as time consuming, unpleasant, and messy. Some felt exhausted owing to treatment burden and sleep deprivation, distressed at seeing their child upset or in pain, or felt they lacked control over their child’s eczema:
‘I feel heartbroken, especially when I see their skin quite bad … you feel helpless.’
(Parent/carer 1, 5-year-old son, mild eczema)
e) Child acceptance and rejection of topical treatments: several parents/carers discussed their child disliking topical treatments. Several felt toddlers were more challenging as they would scream or run away, but some described arguments with older children over delaying or avoiding emollients, and children getting annoyed at parent/carers’ prompting them. However, most felt that, if their child understood why topical treatments were needed, it helped their child to accept them, and that age-appropriate materials explaining eczema and its treatments would be helpful:
‘Books or something like that would be good, or anything … interactive. Colouring on how to apply cream … something that helps them be more educated on what they can do.’
(Parent/carer 12, 6-year-old son, mild eczema)
Several felt that examples of other children talking about eczema and how they self-manage might help normalise eczema for their child:
‘Videos or clips from other kids who’ve got it … then they feel … they’re in the same boat, that other people are experiencing that.’
(Parent/carer 29, 12-year-old daughter, moderate eczema)
Some felt that establishing a routine helped normalise emollients into their child’s day. Others talked about making treatment times more enjoyable with toys or rewards.
f) Reluctance to transition to parent–child co-management and child self-management: some parents/carers talked about letting younger children put their emollients on; however, there were mixed experiences around this. For some it was a deliberate move to teach their child about their emollients. Others described it as a mistake because of the resulting mess:
‘I’m quite reluctant to … “No, let me do it.” Then you’ve got the handprints all over the mirror and you just find sticky stuff everywhere.’
(Parent/carer 10, 5-year-old daughter, moderate eczema)
Although some parents/carers had positive views of transitioning care to their child, these tended to be older or ‘very mature’ children. Several felt their child was too young. Some had difficulties letting go of their child’s care as they felt that their child would not look after their eczema properly because they were not physically capable, or they were not motivated. Some parents/carers managed this by prompting their child or helping them when needed. However, this reluctance to hand over care was apparent even in children close to adolescence who wanted to self-manage:
‘I would prefer to be doing it [emollients] … because I know that it’ll be getting done properly … she’s going through puberty, her body’s changing, she doesn’t want me coming in … there’s been a few arguments, because, sometimes, I don’t think she’s looking after herself properly.’
(Parent/carer 6, 12-year-old daughter, severe eczema)
Only a few parents/carers talked about TCS in the context of co-management; most felt concerned about letting their child apply TCS or felt they needed to be older, reflecting their concerns about TCS:
‘I don’t let her do steroid cream by herself … I’m very conscious that I don’t want her putting too much on.’
(Parent/carer 17, 9-year-old daughter, mild eczema)
Some parents/carers also doubted that other adults would apply emollients as effectively/consistently as they would. A few doubted school would manage eczema or had had schools refuse to manage eczema. Some reported their child feeling uncomfortable using emollients at school. Although a couple of parents/carers described positive experiences at school, this was when there were close links with the school through a school nurse or the parent working there, facilitating eczema management.
