23rd of December
“We are here to accompany life, but without donations would not survive,”
Sabine Reisinger, Chairwomen of Vienna’s first children’s hospice.
Kinderhospiz Netz enables the comprehensive care of critically ill and life-limited
children and adolescents at home in their familiar surroundings and in Vienna’s
only day-care hospice centre for children.
In 2023, VFN is pleased to support Kinderhospiz Netz. Proceeds from annual VFN events,
such as the Flea Markets, Christmas Party and various other activities, allow us to support
our selected charities.
We spoke to the founder and chairwoman Sabine Reisinger.
Why was there a need to establish the Kinderhospiz Netz?
My own daughter died in 1997. She was only six days old and was living in an
intensive care unit at a Vienna hospital. After she died, I had the feeling that I
wanted to work with parents who had suffered the kind of loss that I had. Not only
those who had lost a baby, but also a child or even a young adult. No matter how
old your child is, he or she is always your child.
When we started in 2005, there were no other children’s hospices in Austria, so
there was no one offering the type of service that we do now.
Shortly after my daughter’s death, a doctor contacted me and asked if I wanted to
work with her to establish a children’s hospice. I agreed. I had never had the joy or
pleasure of taking my daughter home, because there were no doctors or nurses
who could have supported us. I did not want other parents to experience this.
At first we spent around three years doing public information work, since there
was little awareness that Austria needed a children’s hospice. Then when we
started, we were just mobile and would visit the homes of the sick children with
doctors and nurses and our volunteers would take care of the siblings.
What is on offer at the day and weekend hospice?
We have a really nice, big room where up to three children can spend a whole day,
from 10 in the morning until six in the evening. There are always nurses here and
volunteers too. This means the parents can have a whole day off. This is so
important, because most parents care for their sick children 24 hours a day and
seven days a week. Around 25 children come here once a week, and we also have
therapy dogs. With the weekend hospice, it is the same process, but the parents
get a weekend off. The children come Saturday morning and stay overnight and
are picked up Sunday evening. Some parents hardly sleep because their sick child
does not sleep, so it is really important for them to have an evening by
What does your mobile service provide?
Our mobile team pays regular visits to the homes of the sick children. Our nurses
can stay for four or five hours with the sick child, compared to a regular nurse who
usually has around 30 minutes. These means the parents have time for shopping
or a visit to the hairdressers.
The severity of the child’s illness usually means that a babysitter cannot be hired.
A trained nurse needs to take care of the child. We also have doctors, a
psychotherapist, a social worker and a music therapist as part of our mobile team,
as well as here at the hospice for the daily and weekend offers.
You also offer sibling support, how does this work?
Siblings are very important for us. With all the focus being on the sick child, they
are sometimes forgotten. We have different offers depending on the age of the
children. It is all about getting together and having fun, doing something really
nice that the parents do not have time to do with the children. This is not about
therapy, it is so the child can say ‘I am in the centre of attention. I can just have
fun. I do not have to explain myself and my situation to the others and talk about
my sick brother or sister because they all have similar situations at home’.
We usually take the children on an outing every month. There are siblings who
never go out. Their parents simply do not have time to take them to the zoo or the
fun fair. They need to stay home with the sick child. If a sibling is not old enough
to go out with friends, they sometimes end up staying home the whole summer.
A further service we provide is counseling where the siblings can talk about their
situation at home and express their own feelings.
So who are your main clients?
We work with the whole system, the whole support network of a sick child. So
with the child, the siblings, the parents, the grandparents. Sometimes we work
with the neighbours and the teachers of the sick children and they siblings.
What can you share about the children you assist?
When you hear ‘children’s hospice’ you often think of cancer, but this is not really
the illness our children are suffering from. Our children are not dying today or
tomorrow. They are sick and they do not get better. The illness gets worse, but
they could live for up to 25 years. This is a big difference to a regular hospice that
supports people in the last phase of their life. Of course, we are there in the
terminal phase too for our children, but we are mainly here when the children are
alive. Our motto is that we ‘accompany life’ we are not only here for death. The
child lives with the family and the siblings for all of their short lives.
We have children here with degenerative muscle diseases. Some are born healthy,
and then develop the illness. Eventually, they can longer move and they die. Other
children are diagnosed with their sickness at birth. We have cases of metabolic
disorders and occasionally children with a form of cancer, such as brain cancer, do
come to us, but this is very rare. The children and young people we care for range
from babies to people up to 27 years old.
How are your funded?
We have 25 staff and about 60 volunteers and are 100 percent financed through
donations. If people want to help, they can make donations or volunteer. We offer
a four-month training course for volunteers. This means they are trained well and
are prepared for the type of difficult situations they will face. We also work with
companies that make donations especially before Christmas and have a fund-
raising team. Our nurses work full-time for us and our doctors also work elsewhere
in the medical system.
We depend on donations and of course there is always the fear that we will be
short on funds. During the COVID time, we thought there would be a reduction in
donations, but it did not happen. Without donations, we would not survive.
You started the hospice 18 years ago and it has grown under your supervision.
What have been the highs?
I have a high point every day. For example, when I hear that the work we do is
fantastic and necessary, and when I talk to the parents and I can really feel how
important our work is for them and their children. Also, for me my daughter lives
here. She is part of what we do. She is the reason why it all started. There has
never been a situation when I have thought that I need to stop what I am doing. I
have my own story and my own history and I have had a lot of opportunities to
learn how to handle difficult situations.
How does your team cope with the emotional pressure of caring for terminally ill
During the training for our volunteers they learn that they have to set their own
boundaries and take care of themselves. And we are always here to listen to any
problems they may be facing. We have regular team meetings, and there is the
option for one-on-one meetings too. The same with our social workers, the nurses
and the palliative care teams, we meet and talk on a regular basis. We are present
when a child is alive and when a child dies. After a death of a child, we have a
separate farewell for our team. The children we work with die at home or in
hospital. Our nurses and doctors are present too.