Workstream 1 addresses objective 1 of the programme: to understand facilitators and barriers to effective eczema management for patients and parents/carers.
Publications relating to this section and workstream are listed in Publications and cited throughout this section.
Workstream 1.1: views and experiences of managing eczema – systematic review and thematic synthesis of qualitative studies
This work has been published:
https://doi.org/10.1111/bjd.19299.26 PROSPERO registration number CRD42018110496.
It was published alongside a supportive commentary written by a prominent eczema advocate27 and also contributed to a National Institute for Health and Care Research (NIHR) evidence signal.28
Aims
To review and synthesise qualitative studies exploring the views and experiences of eczema and eczema management among people with eczema and parents/carers of children with eczema.
Methods of qualitative data synthesis
A systematic review and thematic synthesis of the qualitative literature of people’s experience of eczema and treatments for eczema was conducted to inform the development of the two behavioural interventions. The review focused primarily on the views and experiences of eczema and eczema treatments, and barriers/facilitators to eczema self-management. To be eligible for inclusion, studies must have used qualitative data collection and analysis methods. Mixed-methods studies were included if they had a substantive qualitative component. Papers that focused solely on health service provision models or the views/experiences of health professionals were excluded.
Results
Four electronic databases were searched using a comprehensive search strategy: MEDLINE, EMBASE, PsycInfo and Cumulative Index to Nursing and Allied Health Literature. Searches yielded 2241 records (1569 after duplicates removed). Eligibility screening identified 39 papers reporting 32 studies for inclusion. Studies included in this review explored the views and experiences of 1007 participants including 405 parents/carers of children with eczema, 252 people with eczema and 350 online forum users. Thematic synthesis of the data identified four overarching analytical themes: (1) eczema not viewed as a long-term condition; (2) significant psychosocial impact of eczema not acknowledged by others; (3) hesitancy (patient/carer uncertainty) about eczema treatments; and (4) insufficient information and advice about eczema. See Figure 2 for a summary of key findings.
FIGURE 2 Components of key themes. (Figure not reproduced here; see the original article.)
Key findings from this evidence synthesis highlight that people living with eczema, particularly young people and parents of children with eczema, often do not see eczema as a long-term condition. People are cautious about topical treatments for eczema, especially TCSs, and this appears to be exacerbated by experiences of conflicting and inconsistent advice from health professionals and others. Several barriers and facilitators to treatment use were identified in this review and they helped inform the intervention development in workstream 3.
People with eczema and their carers feel frustrated when others view eczema as mundane, insignificant or ‘easy’, while it has significant psychosocial impact. People were often seeking an underlying cause for their eczema. Interestingly it was often parents and young people who focused on a ‘cure’ for eczema. It is likely that adults with eczema had been living with the condition for longer and had more experience of its long-term and fluctuating nature. Commonly reported messages around ‘you or your child will grow out of it’ can feel like dismissal, especially when mismatched with actual experiences. These findings helped shape the guiding principles and key messages around the impact of eczema and eczema treatment use in the interventions in workstream 3. This review identified an evidence gap and a need for further research in children’s and young people’s experiences of eczema. The second part of this workstream aimed to address these unanswered questions through further qualitative research with children, young people and parents/carers.
Workstream 1.2: views and experiences of managing eczema – qualitative research with children, young people and parents/carers
This work has been published:
https://doi.org/10.1111/bjd.18046.29
https://doi.org/10.1111/bjhp.12467.30
https://doi.org/10.1136/bmjopen-2020-044005.31
https://doi.org/10.3390/children8020158.32
Aims
To further explore the views and experience of children and young people with eczema, and parents/carers of children with eczema, and to further understand the facilitators and barriers to effective eczema management to inform intervention development in workstream 3.
Methods
Qualitative interviews were conducted to supplement the systematic review findings reported in workstream 1.1. Potential participants were invited to take part in this study through database searches and mail-outs from 16 general practices (GPs) in England and through opportunistic recruitment from 3 secondary care sites in England. Participants were invited to take part in this study if they were aged 6–25 years with a diagnosis of eczema or were the parent/carer of a child aged 6–12 with eczema. Children under the age of 16 were invited to the study via their parents/carers. Those who were interested in taking part in the study returned a reply slip to the study team who purposively sampled participants based on age, gender, eczema severity and geographical location to achieve a maximum variation sample.
Written consent was obtained from participants over 16 years of age and parents/carers of children aged under 16, and written assent from children aged under 16 prior to the interview. Interviews were semistructured, and all interviews were carried out face-to-face in participants’ homes or University premises between March and August 2018. Key topics explored in interviews were:
- Eczema experiences and impact on daily life.
- Perceived causes of eczema.
- Views and experiences of eczema treatments/eczema self-care.
- Views about transitioning to co-management and self-management.
- Experiences of eczema information provision.
- Views about websites/web-based inventions.
Secondary analysis was carried out on transcripts of 23 interviews collected as part of the HealthTalk.org SKINS project. As participants from the SKINS project were aged between 16 and 24 years (mean age 19 years), we supplemented the data with five additional interviews that we conducted with young people aged 13–16 to ensure their views and experiences are represented in the findings.
Child interviews
During child interviews, parents were invited to be present to support their child, but we explained that we wanted to find out about the child’s perspective, and we ensured that all questions were directed to the child. A range of developmentally appropriate and individualised techniques were used to help the child feel at ease and feel able to share their experiences including adopting a conversational style and focusing on what the child was doing. At the start of the interview, a conversation was started about the child’s interests, which often prompted them to show the researchers their favourite toys, books, stories they had written and certificates/awards they had won. We adopted a Mosaic approach33 to data collection that involved using multiple creative and fun participatory activities such as using picture cards related to the interview questions to guide the conversation and general play activities. Children were given an ECO whale toy (study mascot), colouring pencil set and ECO whale drawing and colouring sheets. They were also offered stickers and Lego bricks to play with. We aimed to adopt the ‘least adult role’ to encourage active participation in the interview.34 We did this by sitting on the floor with the children and engaging in their chosen activities (e.g. helping build Lego, choosing stickers or colouring pencils) and allowing the children to ‘direct the research agenda’. Children did this through choosing picture cards to guide the conversation, starting the digital recorder themselves, or by expressing their views through drawing their responses to some questions. We were flexible in our approach and found that with younger participants (6–9 years), we often talked about their eczema while they continued with their chosen activity. Children aged 10–12 years were happy to be asked questions in a more traditional interview format and did not feel the need to stay engaged in another activity.
Results
Qualitative data from 72 participants were analysed in this workstream to inform the development of the two ECO interventions. Our participant sample comprised:
- Fifteen parents of children aged 0–5 years.
- Fifteen parents of children aged 6–12 years.
- Eight children aged 6–9 years.
- Six children aged 10–12 years.
- Twenty-three young people aged 16–24 years (SKINS project).
- Five young people aged 13–16 years.
Purposive sampling ensured we included participants with a range of ages, eczema severity and gender. Child interviews typically lasted around 30 minutes (range 19–46 minutes) and adult interviews lasted around 45 minutes (range 30–65 minutes). SKINS project interviews with young people lasted up to 2 hours. Interviews were transcribed verbatim and analysed using inductive coding and thematic analysis.34
Key findings
As reported in Sivyer et al.,35 we found that children do not typically view eczema as a long-term condition, and topical treatments (predominately emollients) were seen to provide effective symptom relief. Uncertainty around co-managing at home was expressed as children typically felt that parental reminders and assistance with applying different types of topical treatments were still needed. For some children, eczema can be difficult to manage at school due to a lack of convenient access and appropriate spaces to apply creams and psychosocial consequences such as attracting unwanted attention from peers and feeling self-conscious. Treatment adherence could be supported by reinforcing that eczema is a long-term episodic condition, providing clear information about regular emollient use, practical advice such as setting reminders to support co-management at home, and working with schools to facilitate topical treatment use when necessary.
Among young people, participants reported a mismatch between information received about eczema and their experiences. They did not expect eczema to be a long-term condition, and this had implications for self-care, making it challenging to identify eczema triggers and evaluate the success of treatment regimens.29 Participants also struggled to adapt and to find a balance between accepting eczema as long term and hoping it would go away. This linked to a gradual shift in treatment expectations from ‘cure’ to ‘control’ of eczema.
Young people described both visible symptoms (such as flaky, dry and inflamed skin) and invisible symptoms (such as itch, pain, exhaustion and mental distress) that elicit different psychosocial needs. These psychosocial needs are to (1) be understood; (2) be perceived as normal; and (3) receive emotional support. This has implications on behaviours, such as seeking support, avoiding going out and hiding their skin, as well as emotional implications, such as social isolation and feeling anxious and low.
Although topical treatments were generally perceived as effective, young people expressed doubts about their long-term effectiveness, and concerns around the safety and an over-reliance on TCSs. Participants welcomed the opportunity to take an active role in their eczema management, but new roles and responsibilities also came with initial apprehension and challenges, including communicating their treatment concerns and preferences with health professionals and obtaining treatments.31 Decisions regarding whether to engage in behaviours that would exacerbate their eczema (e.g. irritants/triggers, scratching) were influenced by young people’s beliefs regarding the negative consequences of these behaviours, and perceived control over the behaviour and its negative consequences.
Conclusion
The qualitative work concluded that for young people who continue to experience eczema beyond childhood, a greater focus on self-care for a long-term condition may be helpful. Greater awareness of the impact of early messages around ‘growing out of’ eczema and the provision of high-quality information may help patients manage expectations and support adaptation to treatment regimens.29
Furthermore, having a better understanding of young people’s experiences and psychosocial needs will provide a framework on how best to support adolescents and young adults when managing symptoms related to eczema.
In children, treatment adherence could also be supported by reinforcing that eczema is a long-term episodic condition, providing clear information about regular emollient use, practical advice such as setting reminders to support co-management at home, and working with schools to facilitate topical treatment use when necessary.
Behavioural change interventions must also address the treatment concerns of children and young people and equip them with the knowledge, skills and confidence to take an active role in their own eczema management.
Impact on intervention development
The systematic review of qualitative literature and primary qualitative research carried out in workstream 1 resulted in an in-depth understanding of the needs of our intervention target users (young people aged 13–25 with eczema and parents/carers of children aged 0–12 with eczema). Key findings were used to develop our programme theory, which included an intervention logic model (see Appendix 1, Figures 7 and 8) and detailed guiding principles (see Appendix 2, Tables 2 and 3). Findings were also used to inform our behavioural analysis (see Appendix 3, Tables 4 and 5). Full details are reported in Workstream 3: development of online behavioural interventions to support eczema self-care.