"Parents' oasis": hoping together, worrying together

Sibylla Kämpf knows how it feels. When all the new parents are out in the parks driving their lively babies around, seemingly happy about every little noise they make, taking them out of the pram and giving them a big hug - and your newborn daughter is lying on tubes in intensive care. "You feel cruelly alone," says Sibylla Kämpf.

In her daughter's case, it was her kidneys. A defect. They simply weren't working. "It was a matter of life and death," remembers Sibylla Kämpf. It was clear: her daughter would need a donor kidney as soon as there was enough space in her small, delicate body. The doctors were unsure whether peritoneal dialysis would even be possible for the first time in a newborn. The blood vessels were definitely still too small for haemodialysis.

Great team spirit in the intensive care unit

Back in 2005, Sibylla Kämpf's daughter was still being treated at the old paediatric hospital in Bruderholz. Three other children shared the room with her. Three other families. All caught between hope and fear. And somewhere in between, the world outside, which demanded that these families continue to find their way in it.

"We parents very quickly felt connected in our situation," says Sibylla Kämpf. They found this very valuable. "We all had our own worries. But we knew we weren't alone!"

The dialogue between them set a strange dynamic in motion. "When I heard what the others were saying, I kept thinking: we're lucky compared to them!" And somehow it all seemed the same.

Everyone was able to draw courage from the worries of others. "It's simply good to be able to talk to others who are going through something similar. It's also easier to get tips and encouragement from them than from people who don't know what it's like," says Sibylla Kämpf.

During the long months in the intensive care unit, we talked about all sorts of things. Even about everyday practical matters. How does the IV work? Where do you get this and that aid for home? Where is the best place to park at the hospital?

Back then, the internet was not yet omnipresent. "For a lot of information, you had to phone around or look elsewhere," recalls Sibylla Kämpf. "You don't really have the energy for that in a situation like this."

Enable exchange

Other parents in this situation should have it easier for once. With this in mind, some of those affected, who were in the intensive care unit at the same time as the Kämpf family, founded the Parents' association intensiv-kids. Sibylla Kämpf joined when her daughter finally received a donor kidney after two and a half years. Today, she is the president of the association.

Sibylla Kämpf is therefore a valuable partner for the UKBB. Self-help has long been actively promoted at UKBB by involving self-help organisations and parents' associations such as intensiv-kids in everyday hospital life. In 2019, UKBB was the first hospital in Switzerland to be awarded the "Self-help-friendly healthcare institution" label by the Swiss Self-Help Foundation. This certificate is to be extended for a further two years in 2022.

The UKBB therefore maintains a lively exchange with various parents' associations and specialist organisations such as the Self-Help Centre in Basel. Sibylla Kämpf from intensiv-kids works particularly closely with Patrizia Kasman from Care Management.

Patrizia Kasman is a social counsellor and self-help officer at the UKBB. Together with the Cerebral Basel Association, the two organise the "Elternoase" - a regular event for parents of chronically ill children and adolescents.

"In difficult life situations, many people initially withdraw. At some point, they reach the point where they want to talk to others who are in a similar situation," Patrizia Kasman knows from experience. "That's why it's particularly important for parents at our centre to find out that they are not alone and that there are self-help groups."

Opening doors with the "parents' oasis"

In the entrance area of the UKBB there is an information wall with flyers from self-help groups. No less important is low-threshold access to such services. This is exactly what the parents' oasis offers.

"Most of them have to get over themselves a little first," says Patrizia Kasman. That's why every Elternoasen meeting includes a presentation on a topic that directly affects parents in their life situation. In addition, parents' associations that are relevant to the topic are introduced. "Parents can simply drop by, listen and find out whether they would like to talk to someone else without any obligation."

The parents' oasis also offers plenty of space for mutual dialogue. Sibylla Kämpf is always impressed by how well the parents are able to open up at these meetings. "Our audience is very diverse. Profession, culture, language - none of that matters here. The common fate is simply a huge bond. Some even say they can reveal more about themselves here than to their psychiatrist."

Connectedness creates trust, and you can always build on that. This was Sibylla Kämpf's experience in the intensive care unit. "We hardly had any privacy in our room. But we were forced to bond with other parents, so to speak. Looking back, that was actually a stroke of luck," she says.

This makes it all the more valuable that people like Sibylla Kämpf use their personal experience to promote mutual exchange and support in stressful family situations.