Aims

To: (i) investigate whether initial eczema mindlines, developed from previous research by the author of this paper,3 23 are an accurate representation of the realities experienced by practitioners and lay people in primary care and (ii) consider how they may best be revised or modified.

Design

Exploratory qualitative interviews24 with constant comparative data analysis.25

Setting, participants and process

Data were collected by the author, a nurse and researcher, from December 2017 to May 2018. Practitioners were recruited via the local clinical research network and word of mouth and lay participants through a higher education institute website with mass sharing via word of mouth and media posts in an effort to recruit hard-to-reach groups who may not realise their value in this type of study.26 Maximum variation purposive sampling was applied27, characteristics were broad and focused on participant’s ability and willingness to discuss eczema mindlines by virtue of their knowledge and experience. Single, individual, semi-structured, audio-taped interviews using a topic guide (box 1) were conducted. The topic guide was based on previous research by the author3 23 and questions likely to elicit thoughtful and detailed responses to address the research questions. Participants comprised lay people (n=19, table 1) and practitioners with between 1 and 26 years clinical experience (n=13, table 2) and lasted from 16 to 55 min. Interviews continued to the point of data sufficiency, that is until the depth and detail in the data gathered fully addressed the research questions.28 Most interviews were face-to-face, in the participant’s workplace, and a small number via telephone. In preparation, participants were sent a brief explanation of mindlines and illustrations of the relevant initial eczema mindline.3 23

Data analysis

Data collection and analysis were iterative processes.29 30 Audio-data was professionally transcribed and transcripts proofread against recordings for accuracy. Data were analysed in two ways. First, in a constant comparison approach25 incoming data was compared with data from the two previous studies from which initial eczema mindlines had been developed.3 23 Here the focus was on identifying similarities and differences in the ways that mindlines are generated, embedded and transformed over time. Second, through subsequent readings of the transcripts, data were mined for participant’s thoughts about how mindlines may best be amended and their beliefs about specific information that should be added or erased.

Reflexivity

A reflexive attitude was maintained throughout, acknowledging own subjectivity and positioning as a nurse and skin health researcher and the influence that this may have on the study.31

Patient and public involvement

Lay people were involved in developing the research question and designing the study. Results will be communicated to participants in a brief summary.

Are lay eczema mindlines a reasonable representation of realities?

Lay participants reported that the concept of mindlines intuitively made sense and noted broad congruence in sources of knowledge and beliefs. They reviewed each element of the existing lay eczema mindline, that is: interactions with family, friends and the wider community and with practitioners, general and focused internet searches, media coverage, trial and error and tacit knowledge within the context of being content to self-manage or accept practitioner management or self-managing by default. Lay participants spoke at length about the presented mindline and provided examples and nuanced insights into the how, why and when their mindlines had been constructed.

Interactions with family and friends and the wider community were experienced by all. The most influential information was advice from mothers. Others reported picking up ‘snippets’ of information, sometimes unbidden ‘I’ve had someone on the Tube recommending a moisturiser’ (Female, 22). Suggestions could be overwhelming ‘they were telling me their regimes or oh try this cream. Everybody had a cream to recommend and it got to the point where I was using so many things, you didn’t know what was working from what wasn’t’ (Female, 27) and often unfounded ‘hearsay… ‘oh well so and so tried this’, ‘oh I know someone who did this’’ (Female, 28). Advice from practitioners was sometimes externally validated with other lay people before making a decision about treatment use.

Participants mainly spoke about GP consultations which were frequently viewed as unsatisfactory. GPs were perceived as having limited expertise ‘sometimes I get the impression that they’re doing no more than you would by Googling it’ (Female, 34) and working on a trial and error basis ‘it’s generally a bit of chuck everything at the wall and see what sticks’ (Male, 36). In contrast to the initial mindline the pathway of knowledge between lay people and practitioners was perceived as one-way. People experienced their views and experiences as being undervalued and suggested that they were provided with standard, often unhelpful, information, ‘I think doctors think everyone’s stupid …… I know the advice is well meant but it’s generalistic’ (Male, 56). Some mentioned power differentials as the cause of their expertise being dismissed ‘I interact with them as equal but he couldn’t have that’ (Male, 53).

Lay participants also consulted with nurses, pharmacy staff, health visitors and a physician’s assistant. These meetings were more positively evaluated, for example after seeing a nurse ‘I felt much more confident that they know in detail what they were dealing with …… they seemed to have a lot more knowledge about products’ (Female, 27). Pharmacists were another source of practical and personalised advice ‘I saw the pharmacist at the practice she was actually very, very helpful, she came out with this keep the creams in the fridge, stroke them on ……… the two saviours were the pharmacists really’ (Female, 75).

Most lay participants had searched the internet, the focus was invariably on finding new treatments or cure rather than understanding the condition. Most had used trusted sources such as NHS Choices, but for some this was ‘a lovely set of generic blandishments’ (Male, 36). Many had ‘Googled’ but were selective in using this information, ‘lot of self-censoring, you know a filter’ (Female, 34). Finding reliable information electronically was challenging and some withdrew ‘I’m wary of Google in case you get frightened by things that you don’t need to see’ (Female, 34).

Other media sources, including leaflets, newspapers and magazines, television programmes and social media, were used to a lesser degree and also treated judiciously. Few people read patient information leaflets enclosed with medications describing them as of little practical value. Leaflets in GP surgeries and pharmacies were infrequently taken and poorly evaluated. A few read newspapers and magazines but were sceptical ‘I’m quite an avid newsreader, periodically there are articles … don’t always believe 100% because I think there could be something sponsored’ (Female, 39). Participants reported seeing occasional television programmes that influenced their thinking but not often their actions; the BBC was considered most trustworthy. Participant’s valued social media for example Facebook and Twitter, the value here was perceived reality, ‘a fellow sufferer saying ‘this works for me’’ [Female, 34]. As with other knowledge sources participants filtered information, ‘the critical eye that I have definitely makes me check and double-check, are these valid sources and cross referenced?’ (Female, 26).

Trial and error was a familiar and frustrating experience for every lay participant ‘you build up this medicine cabinet full of every ointment and then you have a set of stories about each one’ (Male, 53). Tacit knowledge was viewed as an amalgamation of personal experience accrued over time and hearsay from unknown or unremembered sources often from the wider community. Universal tacit knowledge was that TCS ‘thin the skin’ and should be avoided as far as possible. No participants could trace how this thought had entered their mindline, ‘I just grew up with that ‘oh you have to be careful with this’’ (Female, children 13 & 15) and ‘umm … I’m trying to think who told me’ (Female 34).

Participants identified with being content to self-manage or accept practitioner management or self-managing by default. Most described moving back and forth between these states, for example, at times of eczema flare, treatment failure or unsatisfactory consultations. These circumstances triggered fresh attempts to find new ways of managing their eczema sometimes with clouded judgement, ‘we just jump to unreliable sources or do irrational things because you can be tempted to, when you’ve got a really bad flare-up’ (Female, 26).

Eczema mindlines instinctively made sense to lay participants and the content presented resonated with their thoughts, beliefs and experiences. They recognised the multiple influences, including the power of social interactions. Their analysis of personal eczema mindlines reinforced the complexity and difficulty in unravelling how all the elements coalesce particularly as, although content is similar for each individual, the way in which mindlines have developed over time had subtle variations. Lay participants linked efforts to amend mindlines closely with different phases of self-management and for this reason suggested that this should be integrated into the mindlines image (see figure 1).

• Download figure
• Open in new tab
• Download powerpoint

Figure 1

Revised lay eczema mindline.

Are practitioner eczema mindlines a reasonable representation of realities?

Practitioners agreed with the initial mindline but offered less discussion, for example ‘so I think it’s nice model actually, I think it’s all fair, everything you’ve said is fair and reasonable and appropriate’ (Male GP). All agreed that eczema is not perceived as a priority in primary care, that treatment is limited by their local emollient formulary and that they exercised caution in prescribing TCS. A dominant influence on the mindlines of the four practitioners with self-reported expertise in eczema care was exposure to dermatology experts in secondary care. The trusted and structured guidance given had become firmly embedded leading to increased knowledge, skills and confidence and ‘braver’ prescribing of non-formulary emollients (when clinically appropriate) and TCS. These experts contested the backdrop of low priority, but concurred with the relative straightforwardness of treatment regimens while viewing these not as a ‘recipe’ but as principles that should be individualised. The practitioner mindline illustration was amended for clarity (figure 2).

• Download figure
• Open in new tab
• Download powerpoint

Figure 2

Revised practitioner eczema mindline.

Areas of lay and practitioner mindline connection

Unprompted participants considered mindlines of the ‘other’ and the interplay between these entities. Lay participants suggested a need for change in practitioner mindlines but focused on amending lay mindlines. Practitioners were certain about the best targets for mindline amendment. GPs stated that their own and lay mindlines should be amended but considered the former unlikely due to the low priority given to eczema. This view was reinforced by an expert nurse, ‘GPs are entrenched in their views’ and a lay participant, ‘it’s a challenge with the entrenched stubbornness of the medical profession, people will not change their beliefs once they ‘know something’’ (Lay male, 36). Other practitioners advised that health visitors, nurses and community pharmacy staff should be targeted given their relative accessibility for patients.

A challenge for all participants was the volume of often contradictory information from a multitude of sources available to lay people. A GP recounted trying to persuade a patient to use TCS properly, ‘I validate it with something and say, look I do extra work in dermatology, please just trust me, this is fine’. However his efforts were thwarted by the patient’s existing mindlines and standard advice given by pharmacists which generated fear.

Practitioners almost universally identified the key reliable and useful knowledge that should be added to, and outdated or inaccurate information that should be erased from, existing mindlines. Core content is summarised in quotations from participants (box 2). Lay participants were less certain about the essential content but agreed key issues included understanding and accepting that eczema may be a long-term condition requiring ongoing treatment with emollients and that TCS have a place in the treatment of flares.

Examples of synergy and dissonance between lay and practitioner mindlines

Returning to the original definition of mindlines as ‘collectively reinforced, internalised tacit guidelines’ participants demonstrated both the complexity in development and the influential interplay between lay and practitioner mindlines. Participants identified areas of synergy and dissonance across and between mindlines. A key finding is that eczema knowledge does not involve just people living with the condition and practitioners but rather there is a pervasive social element, for example the received wisdom or ‘old wives tale’ that TCSs ‘thin the skin’ causing irreparable damage.

Perceived need to update was low among most practitioners and this pervaded some lay mindlines ‘there’s no point in wasting the doctors time’ (Male, 53). As a result eczema was sometimes relegated to an additional concern rather than the primary reason for consultation and then necessarily given limited attention by practitioners, thus reinforcing its low priority. Practitioners reported ‘we don’t often think about it as a chronic condition which needs regular follow-up and a defined plan’ (Male, trainee GP), leading to reactive treatment with few follow-up appointments. Lack of maintenance therapy impacted on self-management leading to a cycle of flare management rather than a long-term, agreed management plan.

Mindline amendment: whose, what and how?

Mindline amendment proved a conundrum to all. Lay participants reflected on the futility of simply providing more information. Immediate suggestions including predictable approaches such as websites, media and leaflets were made but rapidly dismissed. For example, ‘website … but who would go on it?’ (Male, 53) and ‘leaflets in GP surgeries, but then you just get information fatigue’ (Male, 49). Similarly suggestions about using social media and ‘apps’ were voiced and rejected within the same sentence. Interactive fora were vetoed due to the need for leadership and moderation. One participant favoured a ‘Facebook group specifically for eczema care, I’d probably be part of that… good to have a safe place for people to talk’ (Female, 22) although she acknowledged that sustained participation was unlikely.

Pivotal factors in lay mindline amendment included ‘realness’, exemplified by ‘that’s the stuff that I’m interested in and that I’ll home in on are the forums where you’ve got people telling their stories’ (Male, 53) and ‘people work off stories don’t they, like, I’m living proof’ (Male, 36). Other people’s stories were persuasive for some and disliked by others. Trustworthiness, ease of access and applicability to self were important, ‘quick trusted and easy to access’ (Female, 34) from trusted sources ‘pharmacies, a credible source of information’ (Female, children 17 & 20). All lay participants disliked the generic nature of current information ‘eczema is very particular, people regard it as part of who they are, because it does shape what you’re doing’ (Male, 53). Disillusionment and lack of motivation to change was identified as a challenge to mindline amendment. Interactions and relationships were addressed on several levels. Engagement was one hurdle ‘you need a way of hooking people in, people who are likely to walk past and go ‘I haven’t got time to care about that’’ (Female, 34). The impact of social and relational factors suggested a need for wider amendment ‘an effective way would be to normalise this thing, there’s still a shame element around it, bringing it into normal conversations, everyday discussions, so it’s not a thing that you’re just hiding away’ (Female, 26). Shared, consistent information could be powerful in eradicating influential ‘old wives tales’.

Practitioners proposed existing educational mechanisms for amending mindlines including: free taught sessions with ‘really, really practical, emollient testing’ (Female, nurse) and information which can readily be applied in everyday practice, free online education, sessions during protected learning time. Practitioners rarely accessed available eczema education and were ‘wary of messages from pharma or perceived messages from pharma’ (Female, GP). Expert practitioners were exasperated by the lack of motivation for change among generalist colleagues and the continued provision ‘outdated and wrong’ advice (Female, nurse). Practitioners were aware of existing patient-focused resources, for example NHS Choices, patient.co.uk, the Primary Care Dermatology Society and the British Association of Dermatologists Patient Information Leaflets, but rarely signposted or used these in consultations.

Participants pointed to the need for shared understandings and consistent advice through synergistic mindlines. Reflection on mindlines brought to the fore the diversity and magnitude of influencing factors and the extent to which knowledge was accessed in different circumstances, for example during an eczema flare. The need for consistency of information was a high priority and one best addressed by seeking to modify the multiple channels of information that contribute to lay and practitioner eczema mindlines in primary care with straightforward, evidence based messages.