Supporting families whose child has a terminal illness

Louise Hunt reports on a charity that provides the practical and emotional support so crucial to parents and terminally ill children

The long-awaited national strategy to improve children’s palliative care, launched in February, highlighted the need for social care to support families who want end-of-life care to be in the home.

With most social services departments not having the specialist skills to meet these needs, many will look to engage the voluntary sector to deliver frontline care on their behalf. One such organisation is the Rainbow Trust, which has been providing support to families with life-threatened or terminally ill children since 1986.

Based in Surrey, its seven support teams work across England and it has two respite centres that provide supported breaks for families. The charity takes most of its referrals from children’s nurses and social workers in hospitals and community services.

The trust helps about 1,000 families a year, but Anne Harris, its director of care services, says demand is growing. “The trust is getting more referrals from social workers in children’s disability teams. There is greater awareness of what we do and a greater push from agencies to look at more creative ways of helping children with terminal illness to stay at home.”

Sue Muir, care manager for the Southampton support team (which covers Hampshire, Dorset and south Wiltshire) also thinks that families prefer their child to be in familiar surroundings if terminally ill. “Parents like to think they can keep their child for as long as possible and feel they can let go of their emotions more at home.”

Nursing

The support teams consist of about five staff who are qualified to work with children, many of whom have nursing backgrounds, and are attached to families to provide emotional and practical support – not only for the sick child – but for the whole family for as long as help is needed.

Rainbow Trust’s ethos is to let families take the lead on how they are supported. This can mean anything from help around the house to entertaining siblings while parents are at the hospital or swapping to be with the sick child, allowing parents a rare chance to catch up on other aspects of life.

Muir explains how the service works. “At the heart of what we do is provide psychosocial support to families blown apart by the stress of a child’s life-threatening condition. It is such a devastating experience. We try to keep normal family life going,” says Muir.

For the Pearson family of five children, one of whom is nine-year-old Lucy who was born with a severe congenital heart condition, help from the Southampton team has proved invaluable.

“Before Eleanor, our support worker, we were struggling to hold everything together. We had to take the younger children with us to hospital appointments. Something had to give,” says mother Beverley Pearson.

Because Rainbow Trust does not get involved in any medical interventions, children especially view their support workers as welcome relief from the barrage of health professionals they may be in contact with.

Pearson agrees: “The youngest children don’t associate Eleanor with the hospital. They associate her with having fun and they see her as somebody for them.”

Cathartic

As well as a happy distraction, play is used for cathartic purposes and helps to guide support workers in how best to help the family, says Muir. “We might just do sensory work such as putting icing on a cake. It’s little things that make a perceptive sick child feel normal,” she says.

Support workers must have good listening skills as the chance for families to talk confidentially and individually is a core part of providing emotional support. For the sick child, being able to talk through their feelings with a neutral person can sometimes provide relief if they are worried they are upsetting their parents, says Muir.

And for the adults support workers provide an equally valued listening post. “I can talk to Eleanor about everything and it is nice to have an adult conversation that is not related to the hospital as well as having a shoulder to cry on,” adds Pearson.

A large part of their work is helping families to cope with their child’s condition and bereavement support is on hand for as long as people want it. “Many people may not have experienced the death of their own parents. We have seen it before and we reassure a family they don’t have to do anything in a hurry,” says Muir.

Support workers themselves receive weekly feedback and regular counselling. Muir says one of the hardest aspects of the job is seeing families that need support outside of the trust’s remit: “It can be frustrating. We can only do so much.”

The organisation’s focus on life-threatening conditions, rather than life-limiting, means that each case is assessed and reviewed on its own merits and can often be a tricky balance to maintain, says Harris. Social workers should call the nearest support team to them and discuss the case before referring, she adds.

This article appeared in the 8 May issue under the headline “Rainbow reassures