A Break for Young Caregivers

Gisa Wesche: In our work, we like to translate the term “young carer” as “young caregiver,” because this description also captures the emotional dimension. This is because many children and adolescents with a parent or sibling who is ill often take on the majority of tasks in everyday family life: They go grocery shopping, make sure the refrigerator is stocked, take siblings to school, or accompany family members to doctor’s appointments—sometimes even to interpret. 

However, based on our experience, what all young carers have in common is that they carry many personal worries, such as: “What does the future hold?”, “Is the illness life-threatening?”, or “Why has my mother lost her zest for life?” Depending on the family situation, these are major challenges that entail a great deal of responsibility and often a heavy burden.

One reason is that, as a rule, neither the children and adolescents nor their parents have any idea what it means to be a young carer—or are completely unaware that this family dynamic even exists. At first, a child naturally perceives their family situation as “normal,” making it nearly impossible to contextualize or question it. Parents often feel the same way: They find themselves in this exceptional situation, which at the same time gradually becomes the new normal. Furthermore, this situation is often exacerbated by the fact that families also become socially isolated to some extent. As a result, they lack the perspective of other people’s realities, which could help them better make sense of their own situation. 

In our work with older young caregivers, we often observe that a conscious identification with this role only occurs in retrospect during young adulthood. At that point, many things are understood anew and must be processed. Better public education and greater visibility for this issue are therefore important so that more affected families can receive support at an earlier stage.

In most cases, the affected children and adolescents are referred to us—primarily through school social work. But we now have an extensive network and are in close contact, for example, with child and adolescent psychiatry services, the Youth Welfare Office, various counseling centers, and doctors. 

It’s less common for families to reach out to us directly, but that option is also available. For example, there was a case involving a family in which a sibling had become ill. The parents took the initiative to inquire at the clinic about support options for the healthy sibling and were directed to our services by the clinic.

Our core services for young caregivers include a biweekly group program for children and adolescents. We also offer a vacation program. In addition, we provide counseling support to families. Our counseling services are also aimed at adolescents and young adults aged 18 and older. However, in these cases, the focus is often on helping them identify their role as a young carer, referring them to an appropriate therapy provider, or supporting them as they transition toward independence.

The Young Carers Group meets every two weeks for two hours with a consistent group of participants. Currently, 10 children between the ages of 8 and 12 attend our group. The main idea behind this is to help the children break out of their isolation and offer them a place of joy and relief. The group provides the children with the opportunity to make new connections with others in similar situations.

An important rule of the group is: No one is required to talk about their illness or family situation. If you want to talk about it on your own, you’re welcome to do so and encourage discussion within the group—and benefit from it yourself. It’s a huge source of relief for them to know that everyone here is experiencing, in some way, the same situation at home as they are. 

To get things started, we always bring a topic for a short discussion: For example, we talk about friendships, children’s rights, dreams, their own future, or coping with stress. Afterward, we have a “fun activity.” We bake, do crafts, or play games—always depending on what the children requested at the last meeting. The session ends with a closing circle where each child can share how they’re feeling at that moment, and we tie it back to the theme of the group session.

It usually takes a while to build trust. But we’ve noticed that even children who are particularly stressed or withdrawn start to open up more and more as they get to know us and each other better.

During the school breaks, we offer full-day activities every week, such as trips to amusement parks and zoos, playing mini-golf together, painting pottery, and so on. For some children, these vacation programs are actually their first time leaving the city, and they experience it as a vacation. This shows that the school breaks are a particularly challenging time for families with a sick family member. There’s usually a lot of stress already, and then there’s no structured care during the school year. Furthermore, parents often lack the extra capacity to plan special recreational activities for their children.

It’s the little things that make all the difference. Many children come to our group meeting straight from after-school care, so for them, it really is a very, very full day. That’s why we’re all the more delighted when, during our opening circle, the answer to the question “How am I feeling right now?” is: “I’m happy today because I get to be here, and I’ve been looking forward to it all day.” During the Easter break, for example, we went to an amusement park together, and one child said, “That was the best day of my life.” Most children, however, don’t say much at all; they just go with the flow and seem very content.

We’ve also received positive feedback from parents. During the last vacation program, one mother shared how much she was looking forward to the day: “My children will be happy, and I’ll finally be able to have a whole day to myself to relax.” We have parents with a sibling who is ill, and they’re relieved that their other child finds a space of their own with us—a place where they’re seen for who they are and can tune into what they need at that moment. In another case, we were incredibly pleased to hear that the parent-child relationship has grown closer since participating in the program, which includes counseling.

It’s crucial to think in very practical terms:

• What do children need to feel comfortable?
• What might be some everyday obstacles? How can we overcome them?
• How can we make it as easy as possible for families to participate? 

For example, we often call to remind them of the dates and ask if the child will be coming to the group meeting.

When the children arrive, we first offer them a light snack. After all, they often come straight from full-day school and should feel lovingly cared for here.

And we set up a transportation service half a year ago because we realized that many children couldn’t attend the group meetings regularly since, due to their family situations, no one was available to drive them back and forth. Most families have a packed daily schedule—constantly juggling appointments and obligations.

By the way, all of our programs are free for children and families—including the transportation service.

Since we view schools as key settings for identifying stress in children and adolescents, an important first step for us was to present our program during school social work team meetings. Through this approach, we’ve already reached many professionals, and we’ve established close collaboration with several schools.

We are also currently setting up regular workshops at two secondary schools. There, we lead an entire class period and engage directly with students and teachers. Through hands-on exercises, the children experience what it feels like to have to juggle many tasks at once. This helps them develop an understanding of how friends whose family members are ill might feel. For affected children and adolescents, this educational outreach can serve as a first step toward reflecting on their own roles and gaining access to our services. 

An example from our work illustrates just how important this educational outreach is. For instance, one teacher told us that, immediately after attending our information session, she could think of three children in her class to whom the topic applied. Such “aha” moments make it clear just how great the need for information is.

Our goal is for affected children in the class to recognize themselves in the discussion and find the courage to accept support.

Yes, this is indeed a challenging situation, and there is no one-size-fits-all answer. An important first step is to realize that the child most likely perceives their current situation as normal. Often, they haven’t even given the matter much thought yet. Whether and how to broach the subject also depends heavily on the child’s age. The younger the children are, the more advisable it is to talk to the parents first. With teenagers, it’s actually possible to have a direct conversation, though this doesn’t rule out reaching out to the parents as well.

Gentle ways to broach the subject are helpful, such as: “I’ve noticed this and that, and I know there’s support available for this.” Or “We can certainly look together at what might help you.” It’s important to remain nonjudgmental and avoid making accusations or placing blame.

For this reason, if you’re unsure about how to approach this specific issue, we recommend seeking advice—either from us or other counseling centers. We can then work together to figure out how to approach the topic sensitively.

Our greatest wish is to secure funding. Financial support is essential to providing children and young people with long-term prospects. Currently, we are fortunate to receive funding from Aktion Mensch and the Diamant Software Foundation here in Bielefeld.

From a structural perspective, one urgent wish would be to establish—as is the case for adults—a legal right to support for minor family members. 

And in general, I hope that over the next few years we’ll see awareness of young carers grow: that more families will reach out to us directly, and that we’ll be able to raise awareness of this important issue among even more schools, professionals, and doctors.