Volunteers from the Outpatient Children's and Youth Hospice Service support families in difficult situations. Stadtwerke Gießen is supporting this important commitment with a donation of 5,000 euros.
Whether cancer, progeria, muscular dystrophy, NCL or another life-shortening illness - it is always a shock for parents when their own child receives such a diagnosis. Many families need help to adequately deal with the associated challenges - all the more so if there are siblings. The Giessen Outpatient Children's and Youth Hospice Service (AKHD) offers this important support. The regional branch of the German Children's Hospice Association (Deutscher Kinderhospizverein e. V.) has a well-trained team of volunteers who support families - from the time of diagnosis, during the child's life and death and beyond. "This commitment cannot be valued highly enough. That is why we have decided to provide financial support to the Giessen Outpatient Children's and Youth Hospice Service," emphasises Ulli Boos, company spokesman for Stadtwerke Giessen (SWG). As has been the case for some time, SWG once again refrained from giving Christmas presents to business partners in 2023 and instead donated 5,000 euros to the AKHD Gießen.
Accompanying life
Medical and nursing knowledge only plays a subordinate role for the AKHD's volunteer carers - in contrast to hospice work with adults. Psychological and social skills take centre stage here. This is because those affected usually struggle above all with the omnipresent restrictions associated with the illness. Which is perfectly understandable from their personal point of view. Objectively speaking, however, there are usually still some opportunities to experience positive things despite all the problems. "One of our important goals is to encourage parents and children to utilise the existing options instead of coming to terms with the restrictions," says Dominika Ludwig, formulating an important approach, adding: "Unlike a traditional hospice service, we don't actually offer end-of-life care. We accompany life."
The coordination specialist is the only full-time employee at AKHD until February. As such, she assigns the volunteers to the families. However, her role as a contact person is much more important - for those affected who need help, but also for her volunteer colleagues when they need professional advice. In order to continue to fulfil this important role in the future, the trained paediatric nurse will soon be joined by a professional colleague.
The 25 AKHD volunteers currently look after 20 families in Giessen and the surrounding area. They are also involved in public relations work. "We need additional support," Dominika Ludwig explains. Because the need for support is much greater. There are between five and ten families on the waiting list. And none of them have time. "This is precisely why it is essential to spread the idea of child and youth hospice work in society," says Dominika Ludwig. In order to gain fellow campaigners for the voluntary work or to raise funds. Because the fact is that the AKHD cannot do its work without donations. "That's why we're delighted that SWG have supported us this year," adds Dominika Ludwig.
Important to know: Affected families do not have to pay anything for the support. However, the German Children's Hospice Association - and therefore also the AKHD - receives money from the health insurance companies. But this income only covers a fraction of the costs. For example, for the in-depth, 100-hour basic training programme for volunteers or their regular further training. Neither is free.
Putting your heart into it
When working with families, however, the question of money plays no role at all. It's all about making an often difficult situation a little more bearable for everyone involved. In some cases, an afternoon off during the week gives the parent carer the time they need for themselves. To recharge their batteries or simply to do other important things. In other families, the focus is on siblings. After all, they often suffer from the situation too. Because almost everything in everyday life revolves around the sick child, who is often in need of care. "In many cases, our carers therefore explicitly look after the siblings. By giving them regular attention - exclusively," says Dominika Ludwig, explaining the idea. These companionships clearly distinguish the work at AKHD from that of a traditional hospice. "The topics of death, dying and grief naturally also play a role for us. But especially when we look after siblings, the focus is on the joy of life," summarises Dominika Ludwig.
Actively helping out
Whether financially, ideally or actively - the AKHD is happy to receive any kind of support. As a result, there are many ways to help. You can find out exactly which ones on the AKHD website: www.deutscher-kinderhospizverein.de/kinder-und-jugendhospizdienste/giessen/