Support without taboos

Lisa Schaarschmidt from the Schmetterling outpatient children's hospice service

10 February is Children's Hospice Day. Lisa Schaarschmidt from the Outpatient Children's Hospice Service explains in the Doer of the Week interview that this involves much more than most people realise. The parents' association Elternverein krebskranker Kinder Chemnitz e. V. is responsible for the outpatient children's hospice services Westsachsen and "Schmetterling", which are mainly funded by donations. The latter looks after families in Chemnitz and Central Saxony. To this end, they also train numerous volunteers who support the children and their families.

If someone has not yet heard of an outpatient children's hospice service, how can they imagine your work?
Lisa Schaarschmidt: In the outpatient children's hospice service, we look after and support families who have a seriously ill child who is very likely to have a life-limiting illness. These include, for example, metabolic diseases, genetic or oncological diseases and diseases of the central nervous system.

The paediatric nurse's day-to-day work involves coordinating care: she liaises with families who are already receiving care and welcomes new families who would like support. However, a large part of her work also involves visiting the families themselves:

What exactly happens during home visits?
If it's a planned home visit, it's about taking a look: How is the family doing? Is there perhaps a crisis at the moment? Do they need support with bureaucracy or documentation - for example, are they about to be admitted to a children's hospice?

Do you also have to deal with the child itself or is it more about counselling the families?
Both. Sometimes the children are at school, in kindergarten, in the workshop or in a residential group. When they are there, I can first get an overview of their care. And then I see what concerns the family has.

You also offer sibling care.
The siblings really take centre stage here. We also have many different programmes, for example various sibling days. For example, there is a sibling camp that takes place in the week after Easter. This gives around twelve children and young people the opportunity to take some time out, socialise with each other and just be kids. The camp is organised creatively. Of course, there is also a small professional background where the topic of illness takes centre stage.

You also take care of the referrals to inpatient children's hospices and liaise with the hospitals. How does that work?
The Parents' Association for Children with Cancer works closely with the paediatric oncology department here in Chemnitz. We visit the ward once a week to see which children are currently in hospital and which families are being cared for.

How do the parents and you work together?
Ideally, the families find out about us through the parents' association or the ward. Sometimes we get calls from acquaintances of the families concerned who know us and tell the family about it. Then we call the family or sometimes the families contact us themselves. It's very individual.

Because this important work cannot be carried out by the three full-time employees alone, the children's hospice services train volunteers to become family counsellors. Such a qualification course has been running since the beginning of January. It comprises around 120 teaching units and takes place online, as many participants come from different regions. The course always takes place on Mondays from 6 p.m. to 9 p.m. as well as on individual Saturdays.

What do the volunteers learn on the course?
First of all: What is child and youth hospice work? What do we do as an organisation? Then, of course, various clinical pictures, the topic of death and dying and grief counselling. The topic of communication is also very important. We also organise courses with our partners, for example at the inpatient children's hospice Bärenherz in Leipzig or the Brückenprojekt at the University Hospital in Dresden.

How many families does a volunteer support at the same time?
One would be ideal, but up to two families would be possible. We make sure that there are one or two volunteers per family. However, there are also volunteers who support us more in public relations work or at events.

How many volunteers do you currently have?
The two children's hospice services in West Saxony and "Schmetterling" have a total of around 100 volunteers, 50 per service.

What is the average age of the volunteers?
It starts at 18, there is no upper limit. We have a lot of students. Of course, we also have people who have just retired who would like to find another job. That is also very individual and different.

How do you manage to avoid taking the huge emotional burden home with you?
You need a good work-life balance. That's the be-all and end-all. You realise that there are difficult days and then there are very nice and positive days, which I always try to remember and draw a little strength from. But as I said, the balance is the most important thing for me personally.

Approximately how long do you look after the families?
You can't say for sure. The difference to adult hospice work is that in children's hospice work, we look after and support the children from the time they are diagnosed until they are well into adulthood - until they are about 27 years old. Many also live beyond this age. A shortened life does not necessarily mean that those affected die in childhood or adolescence.

What is the best thing about your work?
The best thing about my work is the individuality, that every day is different. I am open to my work every day and am always happy to get in touch with the families. I enjoy having contact with my volunteers and there is also a very good team behind me.

What would you like more people to know about your work?
My wish would be that more attention is paid to this work, that it is perhaps de-tabooed a little and that people get away from the idea that children's hospice work means that all children die. Because some children do recover. Many children also reach old age. I personally always like to draw attention to this. We try to give quality of life. To really take a look: What do the children, the siblings, the parents, the grandparents need? Our job is to take a holistic view of the family and be there for them.