Positive Health Online

Stacey

Stacey was eight years old when she fell off her bike and injured her chest and ribs. A hospital examination showed no internal injuries but, while there, she developed a sore throat and was prescribed Paracetamol and Septrin. Within days her face became puffy and her eyes watery.

When this got worse, she was prescribed further pain relief. Her condition rapidly worsened and a rash spread to her entire body. Blisters appeared under her eyelids and in her mouth, she ran a high fever and was hospitalized in a critical condition. If she had reached hospital an hour later it would have been too late to save her life.

Stacey, now 25 and with only minor side effects from her experience, was suffering from Stevens Johnsons Syndrome, a severe allergic reaction to medication. She spent a month in intensive care treated as a severe burns patient, with large blisters over most of her body.

Emotionally, the fear and anxiety made her feel very fragile – coupled with the increasing awareness that something was seriously wrong. Her physical appearance by now was so shocking that visitors had to check their own reactions.

"A little girl of eight can tolerate a lot of pain," explains Sister Sherry Tresidder, who cared for Stacey at the Portland Hospital. "But seeing a reaction of shock at her appearance would hurt Stacey emotionally and potentially break her very unstable feelings of hope and security."

Emotional Impact

Stacey was fortunate – her experience was relatively brief and she made a full recovery. But what about the other children – those whose experiences are limited not by their recovery, but by their death? Or for those suffering from longdrawn-out conditions like spina bifida, cystic fibrosis or childhood leukaemia? While the medical procedures may be wearing on the physical body, what is the emotional impact on the child?

There are no simple answers. As I researched this article, I spoke with consultants, therapists and patients themselves. I had hoped to come away with a clear picture of how children deal with this situation – one that I pray I never have to experience first hand.

What is clear is that things have changed since Stacey's episode – health professionals now realize that the emotional dimension of a life-threatening condition is important, perhaps as important as the physical. The way that is applied varies tremendously – as is essential when you consider the complexity of the potential situations.

Age changes everything. A three-year-old child sees the world very differently from a fourteen-year-old. Family situations complicate matters – some families are open and communicative, but many are not, full of unresolved tensions and faultlines. And the illnesses or conditions themselves vary – and hence the effect of them varies.

A child born with cystic fibrosis may live with constant vigilance, physical therapy and medication, while aware that despite all this they will still probably die before their 35th birthday. Another may suddenly develop a cancer that lasts only a few months before they die. Stacey could have died before she had even realized she was ill. Emotionally, dealing with each of these is very different.

In the case of some neurological diseases, says Dr Ann Goldman, Palliative Care Consultant at Great Ormond Street Hospital and Vice-Chairman of ACT (the Association for Children with Life-Threatening or Terminal Conditions and their Families),[1] "children can find that instead of gaining skills, they begin losing them."

Expressing Emotion

In attempting to work with children's emotions, the first hurdle is expression – children do not often have the vocabulary or the awareness to talk about their feelings. Non-verbal therapies such as art and play therapies are being used in certain hospitals to help children express issues that they may not even be conscious of – and then work with them.

Art therapists like Julie Harper at the Royal Cornwall Hospital create positive environments where children have access to paint, paper and other art materials. Without direction, the children produce pieces that illustrate their unconscious emotions, allowing therapists to interpret them. The symbolism and metaphor in the work, says Harper, make it clear what is going on, for example, 'monsters invading my body' images are common among cancer sufferers.

The Family

The consequences of a life-threatening illness go far further than the child themselves, of course. Parents, siblings, grandparents and school friends are all affected.

Stacey explains, "My mum and dad were amazing. My mum didn't leave my bedside for a month. No matter how awful she felt there was nothing that was too much for her or my dad," she says, visibly moved by the memory. "They managed to find humour in really painful situations – like when I had had so much blood taken that there were no veins left, and they had to take it from my feet, so mum and dad used to make jokes about the vampires."

Yet the strain on her parents was tremendous – even today Stacey's mother finds the ordeal painful to discuss. For them, there was no conscious support available, save for the informal network of family and friends.

For families of children with a longstanding condition, the pressure is even greater – years of caring for a sick child and providing support and therapy are bound to take their toll. Under that stress, some marriages break up – making it even harder for all concerned, and increasing the feelings of isolation and abandonment.

Families are confronted with so many difficult decisions: Do we give up work to care for our child? How do we divide our time between our sick child and our other children? These are questions that most of us are blessed with never having to face in such acute circumstances – we worry instead about whose turn it is to get in the front of the car, not whether we have time to go to the supermarket before the next round of treatment is due.

Sibling rivalry takes on a completely different meaning – becoming a potentially devastating vicious circle as a child feels jealous or angry at the attention given to their sick brother or sister sibling, then guilty for having felt angry towards them, then angry again – "I wouldn't be feeling guilty if it weren't for them."

In many cases, children actually try to protect their parents – an unexpected change of roles. Brothers and sisters stop bringing friends home to visit because they don't want to add to their parents' troubles. Sick children pick up signals not to discuss their illness and death, so they don't, instead bottling up toxic emotions, driving them deep within themselves. "Children can be very good at protecting their parents," continues Dr Goldman.

This recognition means that in some cases teams work with the whole family, creating support and opportunities to talk about their feelings. Organizations such as CLIC[2] and CCUPA[3] can provide moral, emotional and financial support for parents. Meeting other families in similar positions makes a huge difference – this is not an isolated incident; this does not isolate the entire family; there are others who can relate to the pain and stress of the situation.

Good intentions can be counterproductive. The loving inclination to keep bad news from a son or daughter is misguided. At a deep level, "children know more than we assume they do," says Dr Goldman. "They pick up all the clues – verbal and non-verbal."

The frantic efforts around Stacey told her enough. "I don't think I realized at the time that I could die," she says. "But I did realize it was very serious. Although no one actually said that, I could tell from their faces."

Communication

Openness and honest communication are extremely beneficial. Research has shown that it helps during the course of treatment, but it also helps the grieving process for those left after the death of a child.

Communication is a bridge into the isolation that sick children feel. With physical changes like hair loss, having to use a wheelchair and lack of strength and/or concentration, patients can feel alienated from the outside world. "No one else feels like this. No one else has had to go through this."

Stacey's school responded to her predicament wonderfully. "My class were in contact all the time, they sent cards and they made sure I didn't feel left out. I couldn't have visitors because of the risk of infection, so the cards they made – even from children not even in my class – really were wonderful."

One aspect of her isolation, however, proved a long-lasting difficulty for Stacey. "Stevens Johnsons Syndrome is very rare. For years I thought I was a freak – only I and a panda at London Zoo had ever had it. That took a lot of work to get over."

Today, group work is becoming more common in certain circumstances. Sharing experiences and time with other patients with life-threatening conditions helps reduce the feeling of isolation. Experience with adults has led the Bryna Trust,[4] a charity that runs free seminars for adults challenged by a life-threatening disease, to look at providing the same seminars for children.

While there still remains so much to learn and explore about the emotional reactions of children to life-threatening diseases, what is clear is how far we have come in helping and supporting children in making the most of the life they have.

References

1. ACT, the Association for Children with Life-Threatening or Terminal Conditions and their Families, runs a Helpline, answering enquiries from families, professionals, students and friends looking for information about issues relating to children with life-threatening or life-limiting conditions. ACT can be contacted on Tel: 0117 922 1556; www.act.org.uk
2. CLIC – Cancer and Leukaemia in Childhood – provides support in the form of art and play therapists in key areas of the country, as well as home-care nurses, homes-from-home near regional oncology centres and family grants. CLIC can be contacted on Tel: 0117 311 2600; www.clic.uk.com
3. CCUPA (Childhood Cancer Unit Parent Association) is the association for parents whose children have been or are being treated for cancer. Based at the Royal Marsden Hospital in Sutton, Surrey, it provides support for families dealing with the pressures of childhood cancer. CCUPA can be contacted at PO Box 259 Reigate RH2 7YJ, secretary@ccupa.org or www.ccupa.org
4. The Bryna Trust runs the Gift of the Heart, a five-day seminar that encourages positive personal growth and has been designed specifically for people living with a life-threatening disease, their friends and family, as well as primary carers and healthcare professionals. The Bryna Trust can be contacted on Tel: 020 8455 7661; www.thebrynatrust.org.uk

Suggested Further Reading

Kubler Ross Elizabeth. On Death and Dying. Routledge. 1990.
Pratt M and Wood M. Art as Therapy in Palliative Care – The Creative Response. Routledge. 1998.
Sarnoff Schiff Harriet. The Bereaved Parent. Souvenir Press. 1979.

Further Information

Information on a wide range of life-threatening diseases can be found at www.cyh.com.au – it includes sections for parents andchildren as well as further links to related sites.