Self-help materials tailored for children with eczema and their caregivers.
Mindful jars can be a calming device that draws our attention to the quieting of emotions.
Stigmatised and isolated
“On top of that, there are the psychological and social aspects. There is a myth that eczema and psoriasis are contagious. Children with it are stigmatised and isolated at school, in the public domain such as transportation, at play, and even at the swimming pool. It’s harrowing for the child and the parents.
“In addition, siblings can feel neglected because so much of family life must revolve around the sufferer’s allergies and inability to do certain activities. Parents also often over-compensate– protecting the child too much. The situation can lead to family conflict, marital distress and even depression – it is a vicious circle. Recently there was a tragedy of suicide and homicide, committed by a young female whose death note contained complaints about her eczema.”
The intervention programme uses the Integrative Body-Mind-Spirit intervention approach the Department employs already to help people with problems such as psoriasis, chronic fatigue syndrome, insomnia and infertility. It is Hong Kong’s first non-pharmaceutical intervention group programme and this is the first time the Department has adopted a parallel group approach of aiding the children and the parents together.
“We talk to parents about their own well-being, instead of their parenting skills,” said Dr Chan. “We try to demystify eczema, to help them resign themselves to the fact that there is no absolute cure and flare-ups will inevitably come and go. But we also point out positives such as eczema is not life-threatening, so what they need to do is to learn how to manage the condition and not let it run or ruin their lives.”
Tools to cope
Another key element is to have the parents differentiate themselves from their child. “Your child is experiencing eczema, not you. Don’t wrap them in cotton wool they need to develop tools to cope,” said Dr Chan.
For the children, the programme implements body-mind exercises to help them articulate and regulate their emotions properly. “They are often bullied,” she said, “and we show them how to cope with their anger and to express their feelings in socially acceptable ways. Instead of having a tantrum, to articulate and tell people what they are feeling.
“We use techniques such as making a ‘mindful jar’, which is filled with glitter and water. Shake the jar when you are angry – as the glitter scatters and then gradually clears try to settle your mind.”
On the practical side, the programme teaches children how to enhance the process of applying skins creams – which they have to do repeatedly and lengthily – into a therapeutic massage process, turning it into a more positive experience.
Dr Chan and her team also found that simply being in the group helped the children feel better about themselves. “They meet other children with a similar condition and it makes them feel more normal and connected.”
The pilot programme had 92 pairs of participants, and after a press conference to publicise the results, the team received numerous calls from parents of more eczema sufferers keen to get involved. “Most are from middle-class families, and as we enter phase two of the programme we are keen to attract low-income families too, especially as it seems these are the ones most prone to listening to ‘folk medicine’,” said Dr Chan.
“For the next stage, we are also introducing some biomarkers such as blood tests and stress tests. The programme, which is a collaboration with four NGOs, with seven social service centres in Hong Kong, will last three years and we hope to have around 200 families participating.”
It was concerned dermatologists and pediatricians who first alerted Dr Celia Chan Hoi-yan and her team in the Department of Social Work and Social Administration to the stress and distress suffered not only by children with eczema but their parents too.
“They told us that parents of children with moderate to severe eczema spend up to three hours a day caring for their children’s skin and often feel hopeless, helpless, guilty and depressed,” said Dr Chan. “They feel it is their responsibility the child is suffering, that they somehow must have passed it on via genetic inheritance.”
To alleviate the problem, the Department launched Hong Kong’s first psycho-social intervention programme aimed at helping children suffering from eczema and their parents too. “We named the programme ‘Seeing the Invisible’ because we want people to see the person inside, not just the skin,” said Dr Chan.
Explaining why eczema is so difficult to live with, she added: “First there is the physical distress
itself – when it flares up the skin is unbearably painful and itchy, which leads to loss of sleep, agitation or anger, and diminished academic and cognitive performance. A few children even experience developmental delay, meaning eczema sufferers can have lower body weight and smaller stature.
Eczema is not life-threatening… what they need to do is to learn how to manage the condition and not let it run or ruin
Dr Celia Chan Hoi-yan
Children summoning their inner detective. The programme aims to help children identify their inner strengths, build resilience and let out emotions effectively.
More Than Skin Deep
Hong Kong’s first psycho-social intervention programme for children with eczema aims to help both the sufferer and their parents.
Parents on the first programme also shared their side of the story and voiced the worries and doubts they have. One of these was that although many of them consult dermatologists, they then distrust their solutions, particularly if they prescribe steroids.
“We explain that if used properly medicines, such as steroids, are fine and they should move beyond steroid phobia, which often they have picked up from social media,” said Dr Chan. “If it works, use it. The other side of this coin though is that some of them trust what we call ‘folk medicine’ or healing practices. That is, well meant but unfounded advice from friends, neighbours, social media etc. It seems everyone has on old wives’ tale on your child’s condition– they know a magical treatment or prescription that will cure it. It won’t.
“We say ‘be your own scientist’. Over time parents will learn what works best for their child, and will become confident in managing the eczema. And, that is exactly what they need to do – manage the condition and equip their child with the tools to deal with it on their own when they grow up.“
The Department of Social Work and Social Administration collaborates with four welfare organisations to offer the second phase of their psycho-social intervention programme for children with eczema and parents.