Brothers and sisters suffer too
A child is terminally ill and needing constant care. What happens to the sick child’s brother or sister? What about the pressure on the whole family?
“They suffer from the situation because the main subject and interest of the family is always the illness and needs of the sick child. They have a secondary role,” said Sabine Reisinger of the Children’s Hospice Network in Vienna.
Ms Reisinger is the co-founder of the first mobile children’s hospice in Vienna, founded in 2005. “Before that time, terminally ill children had to stay in hospital, even for years,” she said. Now, families can decide to spend the last period of their child’s life at home, where the mobile hospice provides every support service and assistance the family needs.
Ms Reisinger said sick children’s siblings need care too. “We offer monthly meeting groups for siblings who meet, become friends and don’t have to talk about their sick brother or sister. Our volunteers are also available to pick them up from school, take them to friends, and do what their mum cannot because she has to stay home with their sick brother or sister.”
A new service offered to families, the day hospice, allows them to leave sick children in the hospice for a few hours or even the entire day. “In this way families can do something different,” Ms Reisinger added. Parents can stay and dedicate time to their other children, for example.
She said: “All families that ask for our help are under financial pressure. Generally, only one of the parents is working, while the other tends to the sick child. And very often fathers leave the family during this period, leaving the mother alone.” Every service offered by the hospice (nurses, doctors, medical equipment, assistance outside the home) is free and funded by private donations.
Ms Reisinger stated that she founded the hospice because her daughter, who died in 1997, had to die in a hospital because they could not take her home. She said: “We stay with the families as long as they need us. It can be 10 years and it can include the period of mourning. The hardest moment for us is usually the time when the family realises that the child is not going to be cured.”
By Ambra Orengo, Albach Media Academy