An innovation to help families of children with eczema
Karina Jackson, Consultant Nurse, St. John’s Institute of Dermatology, Guy’s and St. Thomas’s NHS Foundation Trust, London
We know childhood eczema is a common condition affecting 15–20% of children under 7 years in the UK1 which can significantly impact on the quality of life of both child and family2. It is also estimated that up to a third of young children with eczema will have a co-existent food allergy3. Unfortunately, eczema is usually a long-term problem and the treatment goal is to achieve adequate control of the condition and its symptoms to make everyday life acceptable and fulfilling. To achieve this goal, parents need to be well informed and skilled in managing the condition, fully understanding the treatments and advice prescribed by their healthcare professionals.
Childhood eczema is predominantly diagnosed and treated in primary care4. In our experience, access to reliable and consistent disease-specific information to support self-management is infrequent. Parents often receive conflicting information from professionals and lay people5. The National Institute for Health and Clinical Excellence (NICE) guidance on managing childhood eczema6, identifies support and education as a key component of overall management, yet there is limited knowledge of how best to do this.
Educational interventions focus on the process of acquiring new knowledge and skills to help people become more informed about their condition and the effective use of treatments. Such programmes have been used successfully in the UK for other chronic diseases, such as diabetes and asthma7. In recent years there have been a few scientific papers published citing different models of delivering eczema information to people – for example, a nurse spending time with a parent in clinic or a video for people to watch. In Germany, eczema schools have been set up and trialled for families of children with eczema. The research from this model shows significant improvements observed in both disease severity and parental quality of life one year after attending the six-session eczema school8. There has been no evaluation of large-scale, evidence-based, nurse-led models of educational delivery.
As a specialist nurse working in a dermatology clinic, I played an important role seeing children and their parents for one-to-one support in the management of the child’s condition. I was increasingly aware that much of the core advice I was giving, for example how to use an emollient cream effectively, could quite easily be given to a group of people and perhaps there would be additional value to providing it in a less clinical environment and in an interactive style.
I reviewed the model developed in Germany and considered what elements of this might work in the NHS. We have a large number of advanced practice specialist nurses working in the UK and many are directly involved in supporting children with eczema or allergies. I felt that nurses were well placed to deliver an education programme in the NHS system.
With colleagues, I developed an intervention called the Eczema Education Programme (EEP) and the aim was to provide wide access to structured, evidence-based eczema information to parents/carers of children with eczema, to help them manage their child’s condition more effectively. The service was developed collaboratively with the local NHS Primary Care Trust in 2008. Referral criteria onto the programme included:
- Parent had a child (0–16) with an eczema diagnosis.
- Family had an understanding of English language (or support from relative / friend)
- Child attended host hospital services or lived in the local health community.
Parental referrals were initiated by a healthcare professional but disease severity was not a determinant for access to EEP.
Intervention development and service delivery model
The EEP intervention has been developed using current thinking on how people best learn and adapt or change behaviours (self-efficacy), and the principle of learning in a social situation9. We have also used the best available disease management evidence from the NICE guidelines6. The intervention is delivered to groups of parents by a single nurse trainer who uses a range of teaching methods to address different learning styles and potential language barriers. It is designed to generate group interaction, providing opportunities for shared learning and mutual support. At the end of a session, parental ‘action planning’ is undertaken, which is a key component of the interactive learning. The EEP intervention learning objectives (Table 1) and content (Table 2) are designed to cover the key knowledge and skills required to confidently manage eczema. Multi-professional review of the teaching materials was undertaken and the evidence base for the information is reviewed and updated periodically. The EEP intervention is delivered over two sessions one week apart, each lasting approximately 2½ hours. The sessions took place in either hospital teaching facilities or local children’s centres or community health centres.
A ‘tool kit’ is used by the nurse trainer which provides structure and timings for each session, creating a consistent approach. Our initial trainer model was an ‘expertise-cascade’ delivery model, involving a specialist nurse training and mentoring a community-based practitioner such as a health visitor. There was high interest from community practitioners but unfortunately in our local area, the staff found it difficult to commit due to competing clinical work. We also found that a high level of specialist knowledge was required to deliver the sessions confidently and answer the many questions that parents have. The ‘cascade’ model was discontinued during the first year and replaced with specialist nurse delivery only. The specialist nurses who ran the service were based in the specialist centre but went into the community to deliver the programme in addition to delivering the programme in hospital setting.
During the first two years of EEP we undertook an evaluation of the service and the findings were published in two medical journals10, 11. The service evaluation lasted 20 months (June 2009–January 2011). All parents (n=356) attending EEP were invited to complete a service access and satisfaction questionnaire four weeks after attendance. This was a questionnaire with Likert scale responses (1 = strongly disagree; 5 = strongly agree). It included statements about parental satisfaction with access and EEP experience and on parents’ ability to access and assess the quality of information about eczema.
We also undertook four small parental focus groups to collect qualitative parental satisfaction data, with 21 participants in total. Each was conducted six weeks after EEP attendance.
Referrals in the evaluation period were from GPs (26%), dermatologists (19%) and health visitors (15%), as well allergists and other health professionals (40%). Of those referred, 70% of children were under the age of five years. There was no significant difference in gender of the child (male 49%; female 41%; 10% not recorded). There was wide ethnic diversity.
One hunded and fortysix parents completed the ‘parental satisfaction questionnaire’. Respondents represented parents from 83% of the EEP programmes and reflected the population demographics. Parental satisfaction was highly rated for each of the positively phrased statements and supported by low responses to the negatively phrased statements. Parents were asked to state three things they found most helpful and unhelpful about EEP.
‘Helpful’ content included:
- Learning about triggers (and allergies) and treatments (92%).
- Gaining support, increased confidence and reduced isolation (47%).
- Practical treatment demonstrations (45%).
- Nursing expertise and the evidence base of the EEP (34%).
- Learning how and where to find information (14%).
- The interactive, flexible format (9%).
The ‘Unhelpful’ aspects were infrequently cited and related mainly to logistical issues. The main parental suggestion for change to EEP was for more information on diet and allergies. We addressed this feedback by developing a cow’s milk protein allergy information leaflet with our consultant allergist and dietician.
The focus group data revealed key themes relating to satisfaction, knowledge and understanding (examples in Table 3). Support for practical learning and group teaching, was cited by parents as a key strength of the model. These findings matched the survey results.
Parents also reported that the EEP had enabled them to improve their ability to access information about eczema. Most felt able to assess the reliability of such information, expressed agreement that they understood how to use local eczema services and indicated their preference for accessing information online.
We also asked parents to complete two questionnaires that would give an indication on the severity of their child’s eczema and the impact the eczema had on their child’s quality of life. The questionnaires were completed before they attended the EEP and then four weeks after they attended. Both showed improved outcomes after attending the EEP 11.
We were also interested to know if parents took their child to the GP more or less after attending the EEP service. We reviewed 59 patient records from 23 different GP practices and counted the number of GP visits or practice attendance for an eczema-related complaint for eight months before attending EEP and eight months after. The results ranged from 0–13 visits per child over the eight-month period pre-EEP and 0–8 visits over the eight-month period after attending EEP. The total of all GP visits after EEP reduced by 62% (171 pre-EEP versus 65 post-EEP). This is a small sample but suggests that the EEP may help parents’ confidence in managing their child’s eczema independently and thus rely less on seeing their GP.
This is the first reported large-scale, nurse-led, theory-based model of structured eczema education delivered to groups of parents/carers, providing an opportunity to standardise clinical management. We have received over 5,000 referrals since its inception.
Our experience has shown the EEP intervention with a specialist dermatology nurse delivery model is feasible to deliver in the NHS. EEP is distinctive in being nurse-led, and thus less resource intensive, and has an explicit theoretical basis, building on the self-efficacy construct, observed to be effective in self-managing chronic illness.
The first three years of the service was funded by a charity grant from Guy’s and St. Thomas’ Charity. We were subsequently funded by the local NHS commissioners for three years but regrettably have recently been a victim of NHS cutbacks. We are very grateful to our new sponsor, Action Against Allergy who have thrown a life-line to the EEP and enabled us to continue to offer the service at Guy’s and St. Thomas’ Hospital, to those children with the more significant eczema and associated allergies. We are hopeful this kind gesture from Action Against Allergy will help us sustain the service long enough for us to formulate a new business plan for future NHS funding.
Ultimately we would like to see EEP adopted by other health communities in the UK. To help support this more research needs to be done to provide evidence of benefit both clinically and in terms of cost as this is what NHS commissioners need to convince them of its’ value.
We hope therefore to properly test the EEP intervention and model of delivery through a controlled trial in the UK, recruiting many other specialist nurses to deliver the EEP in their locality, comparing with not delivering the intervention. We have developed a research trial design and hope to apply for a research grant later this year.
Guy’s & St Thomas’ Charity provided financial support to develop the Eczema Education Programme service. The National Eczema Society have provided materials at no cost.
Williams, H.C. (1997) Dermatology: health care needs assessment. Oxford: Radcliffe Medical Press.
Alanne, S., Nermes, M., Söderlund, R. and Laitinen, K. (2011) Quality of life in infants with atopic dermatitis and healthy infants: a follow-up from birth to 24 months. Acta Pediatr 100: e65–e70.
Ebisawa M, Ballmer-Weber BK, Vieths S, Wood RA (eds): Food Allergy: Molecular Basis and Clinical Practice. Chem Immunol Allergy. Basel, Karger, 2015, vol 101, pp 181–190
Schofield, J., Grindlay, D.and Williams, H. (2009) Skin conditions in the UK: a health care needs assessment. Nottingham: Centre of Evidence Based Dermatology, University of Nottingham.
Nicol, N.H. and Ersser, S.J. (2010) The role of the nurse educator in atopic dermatitis. Immunol Allergy Clin North Am 30: 369–385.
National Institute for Health & Clinical Excellence (NICE) (2005). Atopic eczema in children: Management of atopic eczema in children from birth up to the age of 12 years. Clinical Guideline no 57, London: NICE.
Chinn, D., Poyner T. and Sibley, G. (2002) Randomised controlled trial of a single dermatology nurse consultation in primary care on the quality of life of children with atopic eczema. Br J Dermatol 146: 439–42.
Staab, D., Diepgen, T., Fartasch, M., et al. (2006) Age related, structured educational programmes for the management of atopic dermatitis in children and adolescents: a multicentre, randomized controlled trial. Brit Med Journal 332: 933–36.
Bandura, A. (1997) Self-Efficacy: the exercise of control. New York: Freeman.
Jackson, K., Ersser, S.J., Dennis, H., Farasat H. And More, A. (2013) The Eczema Education Programme: intervention development and model feasibility. J Eur Acad Dermatol Venereol. Aug 2 doi: 10.1111/jdv.12221. [Epub ahead of print].
Ersser, S.J, Farasat ,H., Jackson, K., Dennis, H., Sheppard, Z. and More, A. (2013) A service evaluation of the Eczema Education Programme: an analysis of child, parent and service impact outcomes. Br J Dermatol. May 4. doi: 10.1111/bjd.12414. [Epub ahead of print].
This article first appeared in Allergy Newsletter No. 116. Spring 2016.