Supporting children, young people and families to self-manage atopic eczema
Intended for healthcare professionals
Evidence and practice    

Supporting children, young people and families to self-manage atopic eczema

Emma Williams Nurse lecturer and eczema nurse specialist, School of Health and Social Care, Swansea University, Swansea, Wales
Samantha Lakkiss Neonatal nurse, neonatal intensive care unit, Singleton Hospital, Swansea Bay University Health Board, Swansea, Wales

Why you should read this article:
  • To improve your knowledge of atopic eczema and its prescribed treatment regimens

  • To enhance your awareness of the challenges encountered in the self-management of atopic eczema

  • To read about strategies nurses can use to support families to self-manage atopic eczema successfully

Atopic eczema is common in childhood and can continue into adulthood. Adherence to treatment is a significant factor in its effective management, but the complexity of treatment regimens can make adherence challenging. Additionally, living with the condition can have adverse psychosocial consequences for young people in particular. This article discusses treatment regimens for moderate-to-severe atopic eczema and some of the challenges encountered by children, young people and families in self-managing the condition. The authors discuss strategies that can support families to achieve optimal self-management, namely online support tools, written action plans and nurse-led eczema clinics.

Nursing Children and Young People. doi: 10.7748/ncyp.2024.e1478

Peer review

This article has been subject to open peer review and checked for plagiarism using automated software

Correspondence

emma.williams@swansea.ac.uk

Conflict of interest

None declared

Williams E, Lakkiss S (2024) Supporting children, young people and families to self-manage atopic eczema. Nursing Children and Young People. doi: 10.7748/ncyp.2024.e1478

Published online: 22 January 2024

Eczema describes a range of conditions characterised by chronic, inflamed and dry skin which can affect people in any age group (National Eczema Society 2023). There are various types of eczema, for example atopic eczema (also referred to as atopic dermatitis), contact dermatitis and neurodermatitis (National Eczema Society 2023). The most common type is atopic eczema, which affects about one in five children in the UK (Thandi et al 2021, Sutton et al 2022, National Eczema Society 2023). Atopic eczema typically presents in infancy, with symptoms often developing in the first six months of life (Van Onselen 2018, de Lusignan et al 2021), and can continue into adulthood (Greenwell et al 2021).

The precise cause of atopic eczema is unknown, but it is believed to be due to a combination of environmental and genetic factors which reduce the efficacy of the skin barrier, making the skin susceptible to inflammation, cracking and infection (National Eczema Society 2023). Symptoms of atopic eczema can range from localised red, dry, patchy and mildly itchy areas, for example behind the knees or inside the folds of the elbows, to severe itching and discomfort, cracking and sometimes bleeding on extensive parts of the body (Windell 2018).

In children and young people with brown skin, dark brown skin or black skin, the colour of the skin in areas affected by atopic eczema tends to be darker brown, ashen grey or purple. Additionally, children and young people with darker skin tones often present with a papulonodular-type eczema – manifesting as small, rounded itchy lesions – and experience a higher incidence of post-inflammatory hyperpigmentation (a darker patch of skin) than children and young people with paler skin tones (Mortz et al 2019).

Atopic eczema is characterised by periods when symptoms are mild and manageable and periods of exacerbation of symptoms, referred to as ‘flares’ (Johnson 2022). Although there is no cure for eczema, flares usually respond well to prescribed treatment regimens (Leins and Orchard 2017). However, such treatment regimens can be complex and are therefore sometimes confusing for children and young people, their parents and the professionals looking after them. Furthermore, the condition can have significant adverse effects on the quality of life and psychosocial well-being of children and young people and their families (Buckley 2021, Constantinou et al 2022, Cartledge 2023).

This article discusses the management and treatment of moderate-to-severe atopic eczema in children and young people and explores the challenges in adherence to treatment. It also examines some of the challenges experienced by young people and describes strategies that may support children and young people and their families to achieve optimal self-management. Atopic eczema is referred to as eczema throughout the remainder of the article.

Key points

  • In the treatment of atopic eczema, which consists of avoiding triggers and applying emollients and topical corticosteroids, adherence is key

  • Challenges in adherence to treatment include fluctuations in symptoms, complexity or unclarity of treatment regimens and psychosocial factors

  • Young people may several new challenges in eczema self-managment as they begin to take a more active role in their treatment

  • Nurses need to understand the challenges encountered in eczema self-management, provide clear, relevant and individualised information, and support and empower patients and families to take control of the condition

Management and treatment

The management of eczema centres on the frequent use of emollients to maintain the skin’s barrier function, the identification and avoidance of triggers and the use of topical corticosteroids (Greenwell et al 2021).

Frequent use of emollients

Emollients moisturise and protect the epidermis, therefore improving skin integrity, and their use is considered the mainstay of eczema management for preventing and treating flares (Constantinou et al 2022, Cartledge 2023, National Institute for Health and Care Excellence (NICE) 2023a, 2023b). Emollients can also be used as an alternative to soap for washing the skin (Buckley 2021, Cartledge 2023).

Identification and avoidance of triggers

Evidence suggests that people with eczema tend to have an overactive immune system that responds to factors such as topical irritants or allergens by producing inflammation (Luschkova et al 2021, National Eczema Society 2023, NICE 2023a). These irritants and allergens are referred to as triggers. People tend to respond to different triggers.

Triggers that may cause eczema in children and young people include (NICE 2023a):

  • Irritant allergens, such as soaps or detergents.

  • Irritant clothing, for example made of synthetic fabrics or wool.

  • Skin infections, including Staphylococcus aureus and Candida albicans.

  • Contact allergens, such as perfume-based products and latex.

  • Inhalant allergens, such as pollen and pet hair or fur.

  • Extremes of temperature or excessive sweating following exercise.

  • Concurrent illness and disruption to family life, for example teething, emotional stress, lack of sleep or ill health.

  • Certain foods, such as milk, egg, wheat, soy and peanut.

Use of topical corticosteroids

Topical corticosteroids, such as hydrocortisone and betamethasone valerate, are used for maintenance treatment of chronic eczema and for treating flares (NICE 2023a). These medicines are available as creams, ointments, lotions, gels and/or scalp applications and range in potency from mild to very potent – very potent topical corticosteroids are not advised for use in children under the age of 12 years (NICE 2023a). In children under the age of 12 years, NICE (2023b) recommends a stepped approach whereby treatment can be stepped up or down according to the severity of symptoms (Table 1).

Table 1.

Stepped treatment of mild-to-severe atopic eczema in children under the age of 12 years

Severity of symptomsTreatment options
Mild
  • Emollients

  • Mild-potency topical corticosteroid

Moderate
  • Emollients

  • Moderate-potency topical corticosteroid

  • Topical calcineurin inhibitors

  • Bandages

Severe
  • Emollients

  • Potent topical corticosteroid

  • Topical calcineurin inhibitor

  • Bandages

  • Phototherapy

  • Systemic therapy

Recommendations on the application of topical corticosteroids vary. NICE (2023b) advises that to manage flares, these medicines should be applied once daily, or twice daily if once daily does not produce an adequate response, and no more than twice daily. NICE (2023b) also advises that treatment with topical corticosteroids should continue for 48 hours after the flare has passed to prevent a more aggressive return of symptoms. For maintenance treatment, topical corticosteroids should be applied once daily indefinitely, although occasional ‘steroid holidays’ are advised (NICE 2023a). A Cochrane review of strategies for using topical corticosteroids in children and adults with eczema, however, suggests that more potent topical steroids are likely to be as effective if applied only once daily as if applied twice daily and that they are effective in preventing flares if applied twice a week (Lax et al 2022).

There is also variation in the recommendations about the order and timing of application of emollients and topical corticosteroids. NICE (2023a) suggests waiting ‘about 15-30 minutes if possible’ after applying the emollient and before applying the topical corticosteroid, while other clinical experts recommend waiting between 30 and 60 minutes (Constantinou et al 2022). NICE (2023a) states that, due to a lack of good-quality evidence on the optimal order and timing of application of emollients and topical corticosteroids, personal preference should determine which product is used first.

There have been reported concerns among some parents and healthcare professionals about the safety of topical corticosteroids in children and young people because of potential side effects such as skin thinning and growth suppression; however, evidence suggests that such side effects are rare when these medicines are used as prescribed (Axon et al 2021, Cartledge 2023).

Challenges in adherence to treatment

Research has suggested that treatment adherence among parents of children and young people with eczema is low, but the reasons for this are not well understood (Capozza and Schwartz 2020). Parents of children and young people with eczema have been described as experiencing disturbance to normal daily routines, guilt and decreased social activities due to their child’s treatment (Powell et al 2018a). One theory about the lack of adherence is that healthcare professionals may be unaware of these psychosocial factors and may therefore not provide sufficient support (Powell et al 2018a).

Additionally, information on treatment regimens alone may not be enough to support families to maintain optimal eczema management (Ersser et al 2014, Tucker 2022). The variations in the recommendations about the application of topical corticosteroids described earlier (Constantinou et al 2022, Lax et al 2022, NICE 2023a) indicate that there is a lack of consensus among healthcare professionals. Some parents may therefore be confused or overwhelmed by the different treatment guidance available. Fluctuations in symptoms mean that the treatment regimen may change daily, adding to the complexity, reducing adherence to treatment and consequently resulting in suboptimal clinical outcomes (Powell et al 2018b, Waldecker et al 2018).

For some children, managing eczema at school is challenging, which can result in a lack of adherence to treatment. For example, there may be no suitable space in school for children to apply emollients and some ointment-based preparations are messy and difficult to apply (Teasdale et al 2021). Some schools may lack an understanding of the condition, including the need for frequent applications of emollients or the need to avoid potential triggers, such as warm rooms or sitting on carpets (Teasdale et al 2021).

Reasons for non-adherence to treatment can be discussed between the nurse, the child or young person and their family to identify potential psychosocial issues, concerns and/or confusion about treatment regimens. These issues may be resolved through giving practical, clear and reliable advice (Ridd et al 2017, Brown et al 2018). Furthermore, supporting children and young people to develop knowledge about their condition and promoting their independence can support effective self-management, promote child-centred care and result in significant cost savings for health services (Kirk and Pryjmachuk 2016).

Challenges for adolescents

Adolescents may experience several challenges in relation to living with and managing their eczema, particularly as they begin to take a more active role in their treatment (Greenwell et al 2021). Kosse et al (2018) suggested that adolescents with eczema encounter new pressures – such as understanding and adhering to challenging treatment regimens, obtaining and testing effective medical treatments, cooperating with healthcare professionals and negotiating their own care planning – and that these pressures may disrupt their health and well-being. Young people have reported finding it difficult to look after their skin due to the irregular nature of eczema and have expressed a desire for treatments to have a quicker and more lasting effect (Kosse et al 2018, Ghio et al 2021, Teasdale et al 2021). Young people with eczema have described experiencing anxiety, for example about waking up at night due to itching or about flares returning after an improvement, agitation and irritation because of loss of sleep (Howells et al 2017, Ghio et al 2021) and sadness that they had not ‘grown out of’ their eczema, having heard from peers and relatives that the condition was a ‘temporary phase’ (Teasdale et al 2021).

Some young people with eczema have experienced social anxiety and embarrassment due to the physical appearance of their skin (Howells et al 2017, Ghio et al 2021) and have felt ‘left behind’ socially due to a misunderstanding of the condition in their peer group (Lopez-Vargas et al 2019). For some, naming their condition – for example, saying ‘it’s eczema’ – has gained them the support of people who have the condition or know people who have the condition (Howells et al 2017, Ghio et al 2021). Some young people believed that the visibility of their symptoms increased sympathy and understanding among their peers, while others preferred their eczema to be invisible so that they could ‘fit in’ (Lopez-Vargas et al 2019, Ghio et al 2021). Although eczema is perceived as a common and widely recognised condition, some young people experienced a lack of understanding among their peers of the invisible but equally problematic symptoms of eczema, such as extreme pruritis or lack of sleep (Lopez-Vargas et al 2019, Ghio et al 2021).

Qualitative studies of self-management in young people with eczema have found that being supported by healthcare professionals to develop strategies to prevent flares, for example by avoiding triggers, avoiding scratching and adhering to treatment, improved young people’s appearance and their self-esteem (Lundin et al 2021, Teasdale et al 2021). Other studies have found that young people with eczema want to be taken seriously by healthcare professionals (de la O-Escamilla and Sidbury 2020, Ghio et al 2021). For example, some young people in Ghio et al (2021) reported that they felt in control of their condition when they were asked by healthcare professionals to evaluate their choice of products. Young people who had described feelings of low self-esteem as a barrier to managing their eczema reported that they felt more ‘recognised’ and ‘validated’ when they became more confident in communicating their needs to healthcare professionals (Greenwell et al 2021, Luger et al 2021).

It is important that nurses and other healthcare professionals consider the challenges and support needs described earlier when discussing eczema self-management with young people, provide relevant information to enable them to understand their condition and empower them to take control of its management.

Self-management support strategies

Eczema is a chronic and fluctuating condition, so it is essential that parents and carers of children and young people – and those moving towards self-management – understand the prescribed treatment regimen so that they can manage the condition at home independently. Many children and young people have reported feeling left out of planning about their care and that some healthcare professionals direct their questions and information at parents rather than at them (Morgan et al 2022). It is crucial, therefore, that nurses and other healthcare professionals ensure that the child or young person is fully involved in planning and decision-making about their treatment and care (Carter et al 2014).

There are various strategies that can support eczema self-management, including evidence-based online support tools, written action plans and nurse-led clinics.

Online support tools

Self-management support for long-term health conditions using online interventions has been shown to be associated with small but positive changes in health outcomes (Santer et al 2022). Santer et al (2022) undertook a randomised controlled trial to evaluate the use of online evidence-based behavioural interventions designed to support the self-management of eczema in children and young people – one aimed at parents or carers and the other aimed at young people. They found a sustained reduction in the severity of symptoms at 24 weeks and 52 weeks, potentially because the online interventions enabled participants to feel more confident in coping with the condition. The researchers concluded that their findings reinforced the importance of the role of healthcare professionals in signposting patients and carers to evidence-based self-management support for long-term conditions (Santer et al 2022).

There are several online resources available for people with eczema and their families, for example from the National Eczema Society (eczema.org), Eczema Outreach Support (eos.org.uk) and Eczema Care Online (www.eczemacareonline.org.uk). However, online support may not be appropriate for all patients and families, so a combination of self-management support strategies may be required.

Written action plans

Research in primary care settings has suggested that information about eczema treatment regimens may have been miscommunicated to patients, causing uncertainty about topical corticosteroids and how to use them (Duhovic et al 2016, Thandi et al 2021, Lax et al 2022). It is essential that parents and carers are given accurate and unambiguous information about the treatment regimen to support adherence.

A written action plan comprising a step-by-step guide to self-management could help eliminate confusion about treatment (Ridd et al 2017, Thandi et al 2021). Although there is little research on written action plans in the context of eczema (Robertson and Buchanan 2020, Thandi et al 2021), studies on written action plans in the context of asthma have found that they supported self-management by increasing patients’ knowledge about their condition and confidence in managing sometimes complex treatment regimens, therefore improving their quality of life (Goronfolah et al 2019, Poureslami et al 2019).

Alongside the person’s treatment regimen, a written action plan could include their known triggers, how to identify and manage flares and/or infection and the benefits and implications of treatment (Van Onselen 2021, Royal College of Paediatrics and Child Health 2023). All written action plans should be discussed verbally with the child or young person and their family. Healthcare professionals also need to consider the child or young person’s and their family’s communication needs; for example, not all families understand written English, in which case information could be presented in other formats, including using diagrams and photos (Robertson and Buchanan 2020, Crosby 2021).

Nurse-led clinics

Nurse-led clinics in primary care may enhance eczema self-management and reduce GPs’ workload, although evidence of the benefits of such clinics is lacking (Ridd et al 2017, Brown et al 2018). In a study of 15 GPs’ experiences of diagnosing and managing childhood eczema (Le Roux et al 2018), participants described consultations as time-consuming and indicated that they only provided limited supportive information, such as advice on avoiding triggers and applying emollients. Some of the participating GPs observed that it would be helpful to be able to refer patients directly to an eczema nurse specialist, who would be able to explain the treatment, which, in turn, would support self-management (Le Roux et al 2018).

Practice nurses with expertise in managing chronic conditions should be able to incorporate eczema management into their clinics and provide advice to parents of children and young people with eczema (Van Onselen 2018). For example, NICE (2023b) advises that parents should be offered a choice of emollients so they can select the one that best suits their child’s needs, so practice nurses or nurse specialists can describe the different products available to support parents to make an informed choice.

When providing information or developing a treatment plan, all nurses involved in supporting children and young people with eczema and their families must bear in mind that the symptoms are specific to the individual. Since the condition, its management and associated treatments can be complicated, nurses need to think how best to present the information to ensure it is fully understood (Crosby 2021, Ghio et al 2021). Nurses should also attempt to develop a relationship with the child and young person and their family as an integral part of delivering good-quality care to people with long-term conditions. Finally, it is crucial to ensure that children of all ages have a voice in relation to their health and care, so healthcare professionals must work with them as partners in their care (Morgan et al 2022).

Conclusion

Atopic eczema is a chronic and fluctuating condition for which treatment can be complex and potentially confusing. This complexity can adversely affect treatment adherence among parents of children and young people with atopic eczema. Self-management can also be challenging for young people, who are at risk of experiencing a range of negative psychosocial effects associated with the condition. To support children and young people and their parents to self-manage, nurses and other healthcare professionals need to acknowledge the challenges associated with the condition and its management, provide relevant, individualised information and support, and ensure that the child or young person is at the centre of decision-making. Strategies, such as evidence-based online tools, written action plans and nurse-led clinics may support the self-management of atopic eczema.

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