The aim of the study was to describe the families’ experiences with the project and to evaluate the intervention’s impact on the children.

Data was mainly gathered using

1. problem-oriented interviews [9] with a) children ( n = 5 ), b) parents ( n = 4 ) and c) project staff ( n = 4 ), focusing on their experiences with the project.
2. extensive case-files of every family, as recorded by the project’s staff (social workers, family-health-nurse)
3. participatory observation during the young carers groups, focusing on how the children behave in the group.

Interviews were audiotaped and transcribed verbatim. Each interview was read and listened to several times to get an overall impression of the experiences, and preliminary findings were discussed among the authors. Following the framework approach to qualitative analysis [10] interviews were coded according to themes and sub-themes, and the codes and their definitions were refined collaboratively during the process. Data from participatory observation as well as from the case-files were used to confirm, modify or to discard codes. As the analyzation went on, axial coding [11] became more and more important in order to specify the relationship between themes.

The study’s proposal was sent to the Ethics Committee, Institute of Nursing Science, Witten/Herdecke University (EKIP) which had no objections to the study. Participants received written and oral information about the study, and prior to each interview participants were explained the purpose of the assessment. Informed consent was requested from both parents and children. It was repeatedly stressed that participants had the right and opportunity to withdraw their consent at any time.

In sum, 27 families called the project and asked for information about the offered service. 10 families finally enrolled into the project. After three months, 3 families dropped out due to personal matter, as the health-status of the ill family member improved significantly. In sum, 5 children and 4 parents gave consent to be interviewed. Table 2 gives an overview of the 6 enrolled kids who visited the young carer group for half a year. All of these children cared for their mothers, who all are suffering from a somatically illness. Half of the children are living in single-parent-households. Their expectations from the project are mainly leisure-time activities and befriending, while their parents’ expectation is predominantly companionship.

In what follows, four of these children will be presented as exemplars in order to demonstrate the complexity of the cases.

The experiences made by the participants are partly comparable, but children and parents have different key aspects. However, before experiences can be made, there is the participants’ way to the project, which is remarkably long.

In all participating families, it was the ill parent who got the first information about the SupaKids project. They obtained a flyer about the project when they were at the doctor’s, at the hospital or from other aid projects. Direct first contact with the children did not take place.

As soon as the parents have the flyer to hand, a decision-making process is provoked whether to call the project or not. At this juncture, it is essential that the parents first of all acknowledge that they cannot cope alone and require assistance. The parents describe how their decision to contact the project had to first mature in their minds. To accept help is difficult, and its acceptance is perceived as an inner barrier. This process can take months. A mother said:

“Perhaps it takes a bit until you have the guts to admit that you really need help. I can only speak for myself of how it was for me, and I think it’s perhaps the same for others. They must first think, look, umm, is it possible, can I do it?”

The parents balance various motives why to call the project. For all of these, the children’s needs stand at the foreground. Firstly, they realize that they do not function like other parents, and that they cannot amuse their children as they would like to. They wish to enable their children for leisure-time activities and social contacts. On one hand, the illness does not allow for shared activities. On the other hand, they don’t have the energy to stand noisy children all the time. Thus, they seek a place where the needs of the children are spotlighted, where the children can let off steam without having to consider others. A mother said:

“That Mom’s no longer like she’d like to be, and sometimes puts her feet up according to the motto, shut your trap, don’t say another word. And here [at SupaKids] that’s natural, where they can really be what they are. Simply be children.”

Furthermore, the parents are aware that the children are burdened due to the illness and need a break from home. They wish for a place, where their children can forget their worries, where they are taken away from their everyday life and experience a time of carefreeness. The information about SupaKids raises the hope that they might have found appropriate support. This hope triggers the willingness to even reorganize the family’s weekly routine in order to allow the children to take part as often as possible. If it is the appropriate time, a small incident in daily life, for instance the symptomatic deterioration, triggers the actual establishment of contact.

“Yes, because at that time I really had problems, also with my daughter, and then I somehow thought it’s all too much for me. I’ll give them a ring, and have a look at what it’s about.”

The parents first make the contact and then inform their children about the project. The children also have their doubts at first, about whether they should accept the offers available or not. A young carer described it as following:

“So, I must actually say, well beforehand I didn’t want it at all, because I thought that’s just, that yeah that they only handled me somehow somehow differently or so no idea”

And a boy added:

“I’ve considered, whether one can go there”

Once they take part, the children like the group from the very beginning.

Concerning the experiences with the project, children and parents share similar phenomena. However, different key aspects are of importance for the two, which will be described in the following.

Concerning the children’s experiences, the phenomena “Being a child without requests” is the key aspect for the children. They are aware that SupaKids is an offer for children, whose parents are chronically ill, and that they (the children) may take part in the group on the grounds of the illness. They come willingly into the group, and the offer has a great significance. They appreciate the casual play facilities, as well as the contact between equally affected children. The children are taken out of their everyday life and experience a time of carefreeness, in that dropping everything drops from them, and they can at last “really” play. Different from school, where they more likely have the status of an outsider or “nerd”, where they have hardly any friends and are rather bullied, at SupaKids they are equally integrated into the group. A young carer answered the question what she likes most at SupaKids with the words:

“That I found friends here”

At SupaKids everyone can be just the way he or she is. A mother describes it with:

“ and that’s why they gladly come here, here no one discriminates them, no one says to her you fat cow, and insults her or hits and kicks her. They savor that very much, because here all are so different and each one is allowed to be different. Unfortunately, this is not conveyed to the children in the schools of today.”

For the children it’s important that they have peers. The group is very heterogeneous regarding age, gender, and social background. Nevertheless, they harmonize strikingly well. In the group, the children care for one another. The group cohesion is good, there’s a strong connection. In the group the children experience for the first time, that they’re not the only ones whose household situation is dominated by illness. They see that others live in similar situations at home. They all have their eggs in one basket, they know “it’s also similar with me”, and that bonds them. This is evident above all in children who are new to the group. They don’t have to actively integrate themselves into the group, they automatically belong to it. The peers at SupaKids define themselves not by age, gender or hobbies, but the illness. One staff member formulated it like this:

“I believe that they all know about the others, that they don’t have it easy at home. And I also think all have experienced the situation, of how it is to be alone and have a lot of responsibility, and that’s why they can put themselves in the others shoes. Yes, and when someone new, for example, comes into the group they are immediately integrated. And I believe they can identify themselves with the others, because of the circumstances at home. They have a lot of empathy.”

Furthermore, being a child does not only mean to have friends, but to do things together. Thus, not only the young carers group, but also the additional activities have a great significance. Thereby, it’s not so much what they do, but rather that they do it together as a group. Older children for example, enjoy to take part in excursions and projects, that are rather more focused on younger children. Thereby the activities offered must not be extravagant, as the families are rather modest. Besides financially demanding excursions, such as a visit to the zoo or circus, simple activities such as a visit to a park, are gratefully accepted and appreciated. A mother describes it with:

“Above all it’s that this offer even exists. It doesn’t have to always be Hagenbeck zoo or Roncalli circus. Simply get out into the countryside. That costs no money, costs only a ticket, that costs no money. Just go and collect leaves or chestnuts. That’s nice.”

In their eyes, SupaKids cando many good things that are not a matter of course.

Besides being a child the addition without requests is important. For some children, SupaKids is the first opportunity to get away from their responsibilities at home. They are taken away from their everyday life and experience a time of carefreeness, in that dropping everything and they can at last “really” play and let off steam. To allow for that, they follow the strategy of keeping the illness outside, but leave the door ajar. Illness is hardly ever spoken about within the group. Thus the corresponding concept modules (cf. Table 1), which intend that the course of the illness, the symptoms and treatment strategies, as well as first-aid techniques are conveyed in a child’s appropriate language, are only indirectly addressed. The children want to learn about this, but from their point of view it should be so, that the staff gives indirect proposals, however, such conversations should not be forced. A child paraphrased:

“Perhaps not everyone likes that, that everyone latches on that wouldn’t be so good “

This information should, from the children’s perspective, be imparted by books, leaflets or comics. They like to study it alone and quietly for themselves. A young carer described it so:

“Okay, I think with older children, they already know everything. But the little ones there you could definitely do it, but then with... with something like comics or so and then during the period not to thematize it.”

Another girl responded to the question, what the team of a fictive new SupaKids group definitely should not do, with:

“Not to speak about the illness!”

The children, even among themselves seldom exchange confidences with regard to the illnesses. When this happens then it’s usually incidental, for example in subordinate clauses.

“Yeah, we already know thereabout [what illness the parents have] because during festivities or such, then you see the parents. But we don’t talk about it now. We really have other topics.”

The team members confirm the views of the children. They are very carefully awaiting the â€oe right momentâ€, to speak quietly and alone to the staff about illness-related problems. This takes place mainly at the end of the group meeting, when the others have already gone. However, even then it’s mainly to pick up leaflets, magazines or books, so that they may at a later date clarify open questions.

Being at SupaKids has an impact on the children. All parents describe changes they have noticed in their children, which can be traced back to the project. In their eyes, particularly the frustration level has decreased significantly. The children can better channel their wants and energy, because they know that at SupaKids they are free. Then, it’s easier for them to show consideration at home.

“They’re more even-tempered. When I now say, listen, at the moment I can’t do it because of my health, they accept that now. Yes, that’s changed. They try to be much quieter. But there [at SupaKids], there they can romp and play football.”

The parents describe how their children have become more open. The project is a place, where the children can be themselves. From this the children reach a kind of “I’m Okay”-attitude, which allows them to be more self-confident and open.

“She realized, here everyone starts from scratch. At school she really had a difficult time, she couldn’t find any contact in the class. And since she comes here it’s more relaxed. Now, we often speak with the teacher, and she also thinks that it has gottn a lot better.”

And the father added:

“In my eyes she has become more self-confident, and doesn’t withdraw into her shell so quickly, I’d say she now doesn’t avoid problems. And she gets on really great with the others, and when I see how they play in the group. She’s not really a group person, and when I see here how she manages to structure herself, I’m really happy about it. Well, with this comradeship, she couldn’t do it before”

The children themselves can’t describe certain changes directly. For them the group is important, because they’ve found friends and received attention there.

In every family, the ill parent made the initial contact with the project. Apparently, addressing the ill person seems to be the only way to establish a connection between the families and the project. In the first place, the children don’t perceive themselves as “young carers”, hence they would not see themselves addressed by a flyer or an ad. Secondly, there is a “code of silence”[5, 6] in these families, as they often associate intervention from the outside with the risk of being separated. Therefore, family members usually avoid to disclose their need of support in order to protect the ill person as well as the entire family (ibid.). Seemingly, it is the ill family member’s part to assume responsibility for reaching outside support.

At its start, the project faced huge problems to get in contact with families concerned [4]. Two aspects explain this phenomena. On one hand, the population of young carers is hidden, unknown and probably underestimated [2, 5, 12]. Reaching this hidden group in one study (Grounded Theory study [6]) does not necessarily mean that this will succeed again in another study or intervention (current study)[4]. On the other hand, even if a family gets information about the project, they need a considerable time to decide whether to call the project or not. This implicates, that any similar project or research targeting this group must add in extra time for field access and recruitment.

Additionally, this shows that the current German health care system is not aware of this specific population and their need of support. Otherwise, there would be a more intensive collaboration between the e.g. hospitals, physicians, helpdesks and SupaKids or similar projects, focusing on supporting a) the decision process as well as b) confidence-building.

The project’s concept seems to be appropriate:

• The concept was developed with the persuation, that management of chronic illness is a process in which the entire family is involved. Thus, its main characteristic is the delivery of comprehensive support from one source to the entire family. The interviews show that the families value this approach.
• Until now, there has not been a single request concerning support which could not be covered by a project’s module (cf. Table 1).
• The modular body of the concept has been confirmed. Participants appreciate the possibility to call on specific modules without being compelled to do so.

The latter is remarkable, as - for example - the concept’s authors put focus on the modul “Information and education about illness and care” (cf. Table 1), which was supposed to be an important component for the groups. Each enrolled child stated clearly their unease to thematize illness in the group. They value the possibility of asking questions or obtaining leaflets at the time they wish to.

The project does have a core content, namely the informal group meetings for both parents and children. However, SupaKids’ strength is the individual approach determined by the individual case, which might go beyond the official offers. Fosbinder [13] has already described this as “going the extra mile”, which is beyond the expected support and friendly care. This individual support mainly contributes to the families’ overall relief.

The project does both the parents and the children good. The key issue for both is the peer aspect. They experience for the first time that their situation is not unique. By sharing similar experiences, they overcome the feeling that no one understands what it means to manage chronic illness in a family. This leads to an increase of self-esteem. For some children, SupaKids is the first opportunity to get away from their responsibilities at home in order to do what children usually do: meet friends, play and have fun together with others. They get away from their daily sorrows and experience a time of carefreeness. This influences their mood in a positive way and lets them re-energize. Thus, they are able to manage their hindered daily routine for the next days.

Each single intervention has an impact on the entire family:

• Although the young-carers-group deals with the children only, it causes an additional impact on the parents: they feel unburdened, they have time for themselves, they experience liveliness and regain positive conversation topics.
• The parents-breakfast deals with parents only, but this causes an additional impact on the children: they experience their parents to be unstressed, a condition which influences the atmosphere at home in a positive way.

This strengthens the understanding of family as an associated system: interventing at one gearwheel affects the entire system.

The original study design intended to carry out an RCT in order to produce so called hard data. A power- and sample calculation advised to recruit at least 150 children [3]. With the experiences of the SupaKids project it is arguable whether it is realistic to sucessfully complete such a study. As for SupaKids, one can sum up an average number of 10 families per year enrolling in the project. This even makes a pre-post-study that requests an n of 30 participants hard to achieve.