Healthcare professionals' views on psychological support for children and families affected by skin conditions in the UK: A qualitative study
Olivia Hughes, Katherine H. Shelton, Andrew R. Thompson

TL;DR
UK healthcare professionals highlight the need for better psychological support for children and families dealing with skin conditions, noting regional disparities and service barriers.
Contribution
The study provides new insights into the psychological challenges and service gaps faced by children with skin conditions and their caregivers across the UK.
Findings
Children with skin conditions often experience anxiety, depression, self-harm, and suicidal ideation.
Psychological support services for these children are unevenly distributed across the UK.
Barriers to psychological care include lack of funding and training for healthcare professionals.
Abstract
Skin conditions can have a psychological impact on a child and their caregivers, however, support is not equally distributed between geographical regions in the United Kingdom (UK). This study aimed to investigate the experience of National Health Service (NHS) healthcare professionals (HCPs) of addressing the psychological needs of children with skin conditions and their families, and gain expert opinion as to how services need to further develop. HCPs were recruited to a qualitative study with an advert posted on social media. Fifteen HCPs took part in interviews, including dermatologists (n = 4), dermatology nurse consultants/specialists (n = 4), clinical psychologists (n = 4), liaison psychiatrists (n = 2), and a children's psychological well‐being practitioner (n = 1). Thematic analysis revealed children often presented with anxiety, depression, self‐harm and suicidal ideation.…
Genes, proteins, chemicals, diseases, species, mutations and cell lines named across the full text — each resolved to its canonical identifier and authoritative record.
| Characteristic | Number |
|---|---|
| Gender | |
| Female | 11 |
| Male | 4 |
| Job role | |
| Dermatologist | 4 |
| Dermatology nurse consultant/specialist | 4 |
| Clinical psychologist | 4 |
| Liaison psychiatrist | 2 |
| Children's psychological well‐being practitioner | 1 |
| Age (years) | |
| 30–40 | 5 |
| 40–50 | 2 |
| 50–60 | 6 |
| 60–70 | 2 |
| Ethnicity | |
| White British | 11 |
| White British German | 1 |
| White German | 1 |
| Indian | 1 |
| White Irish | 1 |
| Geographic location | |
| England, UK | 13 |
| Wales, UK | 2 |
| Question |
|---|
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Could you tell me about the psychological issues associated with having a skin condition that you see in children? |
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What are the implications for parent/carers and families of children with skin conditions? |
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Can you tell me about the psychological services that you are aware of for children and families? |
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What are your thoughts on offering a mindfulness‐based intervention involving exercises such as slow breathing, meditation, or focussing attention on one thing in the mind, to children with skin conditions and their families? |
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What do you think are the issues surrounding current available support options for children with skin conditions and their families? |
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- —Cardiff University School of Psychology
- —Health Education and Improvement Wales
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Taxonomy
TopicsAdolescent and Pediatric Healthcare · Health, psychology, and well-being · Body Image and Dysmorphia Studies
What is already known about this topic?
- Psychological services for children with skin conditions are in short supply and not equally distributed across the United Kingdom.
- Both children and carers/parents can encounter a significant psychological burden associated with managing a skin disease, and the related social impacts of these conditions.
- Gathering information from expert clinicians is crucial in informing the delivery of high quality care.
What does this study add?
- This study adds to the literature illustrating the wide‐ranging psychological impact of paediatric skin conditions.
- The study highlights current barriers to service delivery in the United Kingdom, including funding/commissioning issues, a lack of training, and a lack of clear referral pathways into existing children and families mental health services.
- Healthcare professionals report the need for the greater provision of psychological support, and recommend further development and testing of specific psychological interventions.
INTRODUCTION
1
Childhood skin conditions can be emotionally challenging1, 2 and families must be provided with the appropriate level of support to buffer against the negative psychological impact. In delivering specialised services, it is not only the families of children with skin conditions who should be involved in design. As well as consulting patients,2, 3, 4 healthcare professionals (HCPs) are central to the process of ensuring an intervention meets target user needs and promotes behavioural change.5, 6 Co‐design with expert clinicians can facilitate an information gathering process by providing insights on what to prioritise or highlight anticipated barriers to delivery.7, 8
A range of therapeutic approaches have been applied to adults with skin conditions, including cognitive behavioural therapy (CBT),9 behavioural approaches (e.g., habit reversal) and stress/arousal reduction.10 There is also some evidence that educational approaches are being used within paediatric dermatology services.11 As well as these, evidence is increasing for the use of specific forms of CBT that integrate self‐compassion12 and mindfulness into the existing CBT paradigm.13 Specifically, mindfulness has shown promise for reducing anxiety and depression in children and adolescents living with physical health conditions14 and has been previously applied to a range of skin diseases.15, 16, 17, 18, 19, 20
Mindfulness involves cultivating an attitude of non‐judgement and non‐reactivity to experiences by learning to focus attention on the present moment.21 For people with skin conditions, practicing mindfulness could reduce physiological arousal (e.g., distress from negative reactions) which may be particularly relevant for dermatological symptoms that can be exacerbated by stress.22, 23 Indeed, the approach could be usefully applied to children and adolescents who may be experiencing heightened distress from an altered appearance affecting self‐confidence during an important developmental period.24 As well as this, mindfulness could improve relational functioning within families by creating an opportunity for bonding and promoting a sense of calm.14, 25 For example, mindful parenting has been found to reduce stress in caregivers of children with psoriasis and eczema.26 However, there is a lack of evidence for the use of psychological interventions with children with skin conditions, and further testing is required to ascertain the effectiveness of mindfulness and identify the underlying therapeutic mechanisms that warrant targeting.2, 23 Alongside this gap in the literature, there also appears to be a lack of agreement surrounding the psychological assessment of young people with skin conditions, pointing toward the need for further dermatology‐specific screening tools.27
To establish the importance of considering the mental health of paediatric patients and referral to specialist services, gathering data from dermatologists could be essential. For example, findings from a qualitative online survey of individuals in the United Kingdom (UK) with skin conditions showed that respondents felt there was a lack of support, and their needs and issues were not always fully understood by other people (including clinicians) suggesting that greater awareness, and provision of services is needed.28 To plan for service delivery, the involvement of dermatologists and other professionals with expertise in dermatology is crucial. A range of HCPs are involved in delivering psychological support to children and families and this is essentially central to the holistic care provided by dermatology nurses.
The delivery of psychological interventions or/and therapies is usually the role of psychological practitioners such as clinical, health, and counselling psychologists as well as professionals trained in designated therapies such as CBT. The inclusion of expert psychological practitioners with experience working with families affected by skin conditions could yield valuable information on how their mental health is managed, to increase understanding of what is important to prioritise when delivering interventions. Along with this, gathering psychologists' insights into running interventions will highlight the feasibility and acceptability of offering a range of approaches to support the well‐being of children and their parents.
Most recently, the British Society for Pediatric and Adolescent Dermatology have provided recommendations for the management of children with skin conditions, including improving assessment and adopting a psychosocial approach to care.29 Given the acknowledged need to increase psychological services within paediatric dermatology,2, 28 this study aimed to: (1) investigate the experience of HCPs in the National Health Service (NHS) of addressing the psychological needs of children with skin conditions and their families, and (2) gain expert opinion on the relevance and need for specific forms of psychological support. Importantly, this research builds on previous work by Hughes et al.2 investigating the parent and child experience of skin conditions and sought to gather evidence from HCPs to inform future interventions.
MATERIALS AND METHOD
2
Design
2.1
This study was a qualitative investigation using a mixed inductive‐deductive thematic analysis approach,30 that acknowledged some of the existing issues in service delivery (e.g., the unequal distribution of across the UK) whilst being open to capturing new/novel information (e.g., surrounding clinical management, views on therapeutic approaches, and foreseen barriers). Qualitative research methods are recommended by the Medical Research Council31 for the development of complex health interventions. When applied to dermatology, in‐depth data can be gathered surrounding peoples' experiences of the structure of services and adherence to treatment to identify training requirements.32, 33 For these reasons, adopting a qualitative approach is important for informing patient management by shaping the nature of new interventions.32, 33
Participants
2.2
Fifteen HCPs participated in semi‐structured interviews (Table 1). The sample size was sufficient for thematic analysis,34 and data was regularly assessed in terms of achieving saturation,35, 36 with consideration of gaining sufficient information power to address the research aims.35, 37
Recruitment
2.3
Ethical approval was granted by Cardiff University (EC.22.09.20.6617R). To be included, participants were required to be healthcare professionals (e.g., practitioner psychologists, liaison psychiatrists, primary care psychological workers, dermatologists, specialist dermatology nurses) with experience working with children affected by skin conditions, in the UK, over 18 years, and an English speaker. Participants were recruited via an advertisement on social media and with direct email invitations.
Semi‐structured interviews
2.4
After informed consent was taken from each participant, a date for interview was agreed. Interviews were held online, and duration ranged from 44 to 87 min (mean = 65.66, median = 63 min). A flexible interview schedule was developed (Table 2), and HCPs were asked to anonymise clinical examples they spoke about. With permission, all interviews were video and audio recorded. Upon completion, participants were debriefed and discussions were transcribed verbatim.
Thematic analysis
2.5
Data were analysed with thematic analysis.30 O.H led the analysis using NVivo 1238 and began by reading and annotating transcripts. Key phrases were highlighted and labelled, followed by systematic coding, and grouping into main themes/subthemes. Themes were cross‐referenced with raw data in an iterative process to uphold rigour. To ensure interpretations were accurate, a member validation process39 was carried out, whereby participants were offered the opportunity to review their excerpts.
RESULTS
3
Thematic analysis led to the development of four themes and ten subthemes (see Table 3).
Psychological impact of skin conditions
3.1
The impact of a skin condition is “more than skin deep” (dermatology nurse consultant/specialist) and can affect the psychological well‐being of children and their families. HCPs observed how “the skin and the mind are intimately connected” (dermatologist) and must be addressed together.
Implications for children and adolescents
3.1.1
There can be “huge impacts on the well‐being, the long‐term effects of young people's ability to integrate, socialize, be motivated, and every aspect of life”. This included disruptions to schooling from a lack of sleep and pain, which could mean that “academically, these children will not do as well” (dermatology nurse consultant/specialist). Indeed, children regularly experienced distress from having an altered appearance. In many cases, these feelings led to clinical levels of “anxiety, depression, suicidal ideation” (dermatologist), and self‐harm. However, it appeared that the level of psychological distress was not always related to severity, and some children with mild disease were equally distressed as children with severe skin conditions. Physiologically, dermatologists described how “we're still trying to understand the links between skin inflammation, itching, sleep disturbance and potential brain inflammation” (dermatologist). There was also an observed association between emotions and the “propagation or exacerbation” (dermatologist) of symptoms.
Shared burden for parents and the family unit
3.1.2
As well as children, their parents experienced worry, sleep loss, and shared the burden of managing treatment. The demands of treatment routines often dominated family life and resulted in additional considerations and planning of daily activities. HCPs described how these disruptions “can lead to mood disturbances and affective disorders in other members of the family” (dermatologist). For example, parents experienced concern over treatment and side effects of drug therapies. This also included a feeling of sadness from having an unwell child. However, the impact extended to siblings, who may miss out on parental attention.
Dynamics between parent and child
3.1.3
The pressures placed on parents can lead to “all sorts of consequences including family dysfunction, or even breakdowns of families” (dermatologist). Psychologists highlighted the way in which parents respond to their condition could influence how a child copes. In cases where intensive care routines are required, the burden of treatment can “cause a lot of ruptures in family life” (clinical psychologist). There can also be skewed boundaries leading to the development of “very complex parental relationships” (dermatologist). However, managing hereditary skin conditions could increase bonding, as parents may be able to empathise from their own experiences. Nevertheless, parents could equally respond in less helpful ways if they encounter feelings of guilt or manage their condition differently to their child. Ultimately, HCPs speculated how increased levels of parental stress could contribute to the severity of the child's skin condition.
Identifying distress in families
3.2
HCPs described how they would identify distress during consultations, including assessing mental health. HCPs reported what they look for in terms of body language/emotional cues, and how they would manage a child that required support from specialist services.
Initial assessment and approach to treatment
3.2.1
HCPs often began consultations by validating mental health concerns and to “not hide away from it, because it's very difficult as a professional sometimes to go down this road” (dermatology nurse consultant/specialist). This involved acknowledging the psychological challenges associated with skin conditions. Indeed, risk assessment is critical in dermatology, and emphasis was placed on the need for open discussions with children who might be experiencing distress. There were several signs in terms of body language that indicated distress in paediatric patients, including posture in clinic, behaviour during appointments (e.g., tearfulness, or outbursts of emotion), and milestone attainment. In addressing mental health, there was a need to manage expectations with consideration of curability and limited support services. Psychologists described approaching treatment by assessing symptoms to determine which form of intervention would be most appropriate. As well as this, HCPs discussed the benefits of having a family‐focussed approach to treatment, although this depended on relational dynamics.
Standardised measures versus questions
3.2.2
Clinicians are encouraged to use a validated measure to assess the impact of a skin condition on a patient's quality of life. Indeed, several standardised measures were used, including: The Children's Dermatology Life Quality Index (CDLQI)40; Dermatology Life Quality Index (DLQI)41; The Revised Child Anxiety and Depression Scale (RCADS)42; The Patient‐Oriented Eczema Measure (POEM)43; The Patient‐Oriented Scoring for Atopic Dermatitis (PO‐SCORAD)44; Hospital Anxiety and Depression Scale (HADS).45 Despite this, not all of the scales are appropriate for younger children, but illustrate how HCPs sought to use a range of validated tools. Importantly, most of the HCPs described preferring to assess mental health by asking direct questions alongside questionnaires, to open up a conversation. Many HCPs described how existing quality of life measures were not always the most accurate tools for determining levels of distress, and pointed to the need for training in broader psychosocial assessment skills. Thus, it was highlighted how there can sometimes be discrepancies between psychometric scores and how a child is coping in reality, as well as the need for further work to improve dermatology‐specific screening tools.
Level of support provision
3.3
Current available psychological therapies
3.3.1
When discussing psychological therapies, there were differences between psychology and dermatology staff. All psychologists discussed the specific psychotherapeutic approaches they would draw upon to target distress, however, dermatologists all spoke of the discrepancies between severity and psychological impact. Contrastingly, psychologists were clear in their recommendations for which interventions they would use, but dermatologists described the challenges arising from a lack of clear referral pathways. However, in the first instance, all HCPs agreed on the value of signposting to charities to “help fill the gaps” (dermatology nurse consultant/specialist). Several of the HCPs had working links with specialised services and were able to refer children to receive treatment. Where available, several interventions were offered, including CBT, mentalization‐based therapy, compassion‐focused therapy, mindfulness, and acceptance and commitment‐based therapy (ACT). Psychologists often combined different techniques according to the child's preferences and used individual formulation based interventions, as well as other strategies including progressive muscle relaxation and habit reversal.
Lack of access to specialist services
3.3.2
There is a “lack of provision” of specialist services (clinical psychologist), and access can be “like a postcode lottery” (clinical psychologist). All HCPs noted the unequal distribution of specialised psychological support services across the UK. The difficulties in patients' accessing specialist services was speculated to be a result of a combination of different factors, including workforce, as well as funding for commissioning. For HCPs without direct access to specialised services, they referred to child mental health services, however, there were often long waiting times. Additionally, the importance of having a tailored psychological support intervention was highlighted, to address the specific symptoms associated with skin conditions.
Healthcare professional recommendations for improving care
3.3.3
HCPs provided recommendations for how paediatric care could be improved with better access to psychological services. Considering the psychological impact of a skin condition was seen as equally important in dermatological care as prescribing drug therapies. Having a multidisciplinary approach with involvement from a psychologist was described by one dermatologist as helping to “unlock certain things…they can get to completely different layers of people's psyche compared to what I can do in my consultation with the patient, and then feed that back to me…so I can understand that patient better”. Further, another dermatologist felt that although they were able to “facilitate basic, affirmative CBT in every consultation…more developments would need a bit more training” to improve the psychological well‐being of patients.
Relevance of a mindfulness‐based intervention
3.4
HCPs were asked for their views on offering children and their parents a mindfulness‐based intervention, and whether, from their experience, they thought that this approach might be acceptable. HCPs were asked to give their insights into the potential benefits and barriers of delivering mindfulness.
Potential benefits of mindfulness
3.4.1
Mindfulness can “centre you, make you feel calmer about life, it can help with anxiety, it can help with repetitive thoughts” (dermatologist). Several HCPs described having previously used mindfulness with children/families and “generally, it's very positive” (dermatologist). It was also speculated how the approach could promote positive physiological changes in the body and improve the skin condition itself “although we don't know how the brain or the mind‐skin axes really work, there could be implications for reducing inflammation if you can calm your mind”. Despite this, several HCPs felt mindfulness may be more beneficial for parents, as the impact on caregivers is often overlooked. In terms of delivery, an online format could promote engagement, as “real time interventions give patients a very specific responsibility to attend” (dermatologist). HCPs also felt “the tenants of mindfulness are useful but maybe not in the very formal way” (dermatologist).
Barriers to engagement in mindfulness
3.4.2
HCPs highlighted several anticipated challenges to delivering a mindfulness‐based intervention. This included how “you have to make the time for it, it doesn't work if you just do ten minutes once a week” and “for busy parents with lots of caring needs, making that time, they might struggle” (clinical psychologist). HCPs described that for some children, sitting with thoughts and body sensations in a non‐judgemental way could be difficult or even “intensify their experience of itchiness” (liaison psychiatrist). In terms of acceptability, several HCPs raised the potential impact of socio‐economic status on accessibility, and the need to ensure an intervention is equally available for all demographics of patients. Of note, one dermatologist spoke of how they had referred patients to try mindfulness and it had mixed reviews, suggesting that there could be individual preferences.
DISCUSSION
4
This study aimed to investigate the experience of HCPs of addressing the psychological needs of children with skin conditions and their families and gain expert opinion on specific forms of psychological intervention. Participants all described encountering a significant psychological burden in children,2, 46 including social withdrawal, interruptions to education, lack of sleep, and co‐morbid mental health conditions, such as anxiety, depression, and in severe cases, suicidal ideation and self‐harm. The burden was equally profound for parents (and siblings), who experienced disruptions to sleep, stress, and sadness from having an unwell child.1, 47
There was consensus for the need to conduct thorough assessments with a range of screening tools and skills to identify psychological distress (e.g., standardised measures, clinical observation, interviewing).27, 29 These findings are supportive of previous research carried out by the British Society for Pediatric and Adolescent Dermatology,29 and highlight how HCPs felt the most comprehensive way to assess distress was by asking direct questions, with assessment tools as a guide. Although this appeared to be the favoured approach, there could be restrictions in terms of time pressures during clinic appointments. As well as this, HCPs must feel confident enough to have open discussions with families about mental health. If clinicians are regularly asking about psychological well‐being and identifying problems, it is imperative there is somewhere to refer patients to. However, all HCPs felt support services were unequally distributed across the UK and were not meeting demand.48 The disparity in care was speculated to be for a range of reasons including a lack of: (1) mental health training, (2) funding, and (3) unclear referral pathways. HCPs made recommendations for how dermatology care could be improved for children and their families, with additional training, commissioning, and standardised access to psychological support.28, 48, 49
Despite this, many HCPs had overcome the challenges; trained psychologists typically discussed their experience of delivering a range of therapies (e.g., CBT, ACT, mindfulness, mentalization‐based therapy, compassion‐focused therapy, family/systemic therapy), whilst dermatology professionals described using simple single therapeutic techniques (e.g., habit reversal), and sometimes complimentary approaches were also offered (e.g., yoga, progressive muscle relaxation). Further, HCPs felt mindfulness could be helpful for children experiencing anxiety.2 Several dermatologists described how mindfulness could potentially reduce inflammation and upregulate healing processes. Although biological mechanisms were discussed by HCPs in a theoretical manner, there were anecdotal examples of stress being observed as a precipitating factor in the exacerbation of symptoms and maintenance of vicious itch/scratch cycles. Indeed, there is evidence to suggest that activation of the body's stress pathways (e.g., hypothalamic‐pituitary‐adrenal [HPA] axis) could impact on skin homeostasis.50 Activities such as meditation could reduce activation of the nervous system and mediate physiological reactivity to stress.51 However, the stress‐inflammation pathway is complex, and further research is required to test the efficacy of this approach and understand the underlying mechanisms.52
Mindfulness had been used by several clinical psychologists, who spoke of favourable outcomes for skin‐related symptoms. However, some HCPs who had experience of offering mindfulness‐based interventions described how not all patients had engaged with practices for a combination of reasons, including previously highlighted misconceptions surrounding the nature of mindfulness.2, 53 HCPs provided suggestions for how mindfulness could be delivered to families, including using an online format to promote adherence.2 Participants felt a more informal mindfulness curriculum might be easier for families to engage with, as they often had complex treatment routines which might limit how much time they have to practice an intensive intervention. Indeed, similar findings have been previously reported by parents of children with skin conditions themselves.2 Of note, several HCPs felt that mindfulness could be usefully applied to manage levels of parenting stress, and there is emerging evidence to support this.26 Importantly, both dermatologists and psychologists highlighted the importance of taking a systemic approach to consider a child in the context of their family environment, suggesting that alternative psychotherapeutic approaches also warrant investigation, such as family therapy.
However, this study does have several limitations. Whilst the sample size was appropriate for this design, participants were self‐selecting and had an interest in psychodermatology, which may affect transferability to general practice. As such, additional surveys might compliment this study by considering the extent to which these findings are mirrored in other services and in other countries. Further, this study focussed on Wales and England, and did not include participants from other UK nations (i.e., Northern Ireland or Scotland).
Overall, dermatology and psychology healthcare professionals openly recognise the shared burden experienced by families affected by skin conditions, but are often limited in providing psychological support. Although many clinicians across England were able to deliver specialised services to children and their parents, the provision was determined by location in the UK. There was consensus from all healthcare professionals in the need to integrate psychological services into the dermatological pathway of care as a national standard, to reduce the disparities in access to specialised care.
CONFLICT OF INTEREST STATEMENT
O.H is a Patient Associate Editor for the British Journal of Dermatology. A.R.T is an Associate Editor for the British Journal of Dermatology and has received research support or/and honorarium in the last 12 months from Sanofi, Pfizer, and UCB. He is also a Trustee to the charity Changing Faces and a member of scientific advisor board of The Vitiligo Society.
AUTHOR CONTRIBUTIONS
Olivia Hughes: Conceptualization (equal); data curation (lead); formal analysis (lead); investigation (lead); project administration (equal); writing – original draft (lead); writing – review & editing (lead). Katherine H. Shelton: Conceptualization (lead); methodology (lead); project administration (equal); supervision (lead); writing – original draft (supporting); writing – review & editing (equal). Andrew R. Thompson: Conceptualization (lead); methodology (lead); project administration (equal); supervision (lead); writing – original draft (supporting); writing – review & editing (equal).
ETHICS STATEMENT
Ethical approval was granted by Cardiff University (EC.22.09.20.6617R).
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