Two central phenomena have been developed. On the one hand, there is the phenomenon: 'keeping the family together', which encompasses how families cope with the chronic illness and which tasks are being shifted and redistributed to manage every day life. Influencing factors, the children's motives as well as the impact on all family members, belong to this phenomenon. The second phenomenon: 'to live a normal course of life' describes the aspect of hope as well as concrete wishes and expectations towards outside support. These two phenomena when linked together constitute the 'model of experience and construction of familial care', in which children take over an active role (see Fig. ) – which will be summed up in what follows.
Model of experience and construction of familial care, in which children take over an active role.
Management of chronic illness affects the entire family, not only the chronically ill person. Every day life changes and must be reorganized. The children cannot do things with their parents as they used to, they also experience being separated from their parents due to hospital stays, and furthermore, financial shortages become an actual issue as well as a fear. At best, to anticipate the overall ambition of these families concerned, they manage to develop strategies that allow them to learn to live with the illness, and to live every day family life as normally as possible. Very often, this is not possible, because management of chronic illness is a dynamic process influenced by many factors.
First of all, the severity of the illness and the necessity for care are the primary determinants of the necessary reorganization of every day life. Another influencing factor can be called the 'number of shoulders', which describes the number of people that are available to help with work. It makes a difference, whether we look at a single parent family without outside support or at a family where parents and maybe even grandparents and/or friends are available to help with work. Furthermore, financial shortages, the family's economic situation, as well as bureaucratic hurdles have influence. The more constrictive factors come together, the more the chronic illness dominates everyday life and becomes a threat to the family's normal course of life. Children worry about their parents and they fear to be separated as a family. The family now close ranks, and children take over an active part in the construction and maintenance of family life. Trying to keep their family together, they assume responsibility; their interventions are multilayered and complex.
Bridging the gap and being alert
They 'bridge the gaps' that emerge, in fact regardless of the underlying illness (i.e. somatic or mental), and they put themselves on alert in order to react immediately to changes. Young carers do what adult informal caregivers do as well; they take over tasks which are left unaccomplished because of the illness. While in some cases such 'gap-bridging' may be provided just occasionally, in others adolescents may take on sole responsibility for caring tasks, and that "around the clock". To illustrate this, a 19 year-old girl reflecting on her time as a young carer will be quoted: "I got up early in the morning and got ready myself, then I went to my Mum, helped her out of bed, washed her, dressed her, and then I put her in the wheelchair and went to school. After school I always had to run home, there was no time for a chat with my classmates, I always had to hurry up, because Mum needed to go to the toilet which she couldn't do without me. Thus it kept going on all day. Shopping, cooking and cleaning up. (...) But most of it was the care and the cleaning up."
Since chronic illness is an unpredictable process, the children involved in such a situation will always be in a 'stand-by' and 'ready to act at any time' position beyond their regular tasks.
The concept 'keeping silence' also belongs to these interventions and it describes the children's secrecy. Hardly any of them talk to others about the situation at home, and this silence in most cases is rooted in shame and caution. Almost all of them mentioned that other children "do not understand", because they don't know what it means to cope with a chronic illness within the family. On the other hand, children usually want to go back to normality, they don't want to "be different", and they are afraid of being isolated and excluded by their peers. Furthermore, you can observe a code of silence in these families, because many of them are in deep fear of being torn apart. From the children's perspective, intervention from the outside is often associated with separation, and a threat to the child's family also means a threat to the child's own identity as well.
Motives for taking over caring tasks
Even though, many children deliver care to a great extent, for most of these young people, without question, their help is a matter of course, and this may be understood by looking at their motives for taking over caring responsibility. These did not belong to the research questions in the first place, but as the inductive analysis went on, children's motives seemed to play an important role in understanding families' strength. The children are socialized into their caring tasks, and as the chronic illness progresses, kind and extent of their tasks will change and increase. This adaptation, often hardly recognized, does not occur as a consequence of a conscious decision-making process in favor of becoming a carer. Caring tasks arise and change in the course of the chronic illness. For the youngest (preschool- and elementary schoolchildren), the wish to help "Mummy" dominates over everything else, and they do not experience their help as a burden. As age increases, the children's awareness of the necessity for their help also rises. For these children, the awareness of being responsible resides over the pride of being able to make a contribution. They know that their family relies on them. A 14 year-old girl said: "my siblings are little, I can not say 'I can't stand it any longer', (...)' I must be there for them, that's where the power comes from.' and she adds: "because it's my family, (...) I want to be there for my family"'. Finally, looking at adolescents, their motives are similar to those of the younger children; this particularly holds true for the motive of affection for the ill parent. However, feeling responsible for the family and moving together as a family not only emerges from the acute situation and from sheer necessity. Adolescents explain their caring also by referring to their emerging sense of morality. A 17 year-old girl said: "I would never forgive myself if I wouldn't do it", and an 18 year-old boy reasoned: 'that's not what I learned when growing up, to walk out on someone and say: 'just do your shit alone''.
Impact on the children and the family
There is no doubt, that the various caring activities do have implications on the children's development – positive as well as negative ones. In accordance with British research results (see page 3), positive effects as mentioned by young carers are their increased sense of self-esteem, the feeling of being "one step ahead", early maturity, as well as a strong sense of coherence. They are important resources that need to be considered when thinking of support. We would like to focus on the negative effects, because they are the cause for concern. These include the secrecy of the family's distress, and the fact, that young carers usually have no one to talk to. Social isolation has to be mentioned, because many young carers have no time left for friends; a 14 year-old girl, oldest child of a badly traumatized mother, told us that it makes her sad to see all other children playing outside except for her. Furthermore, we also observed difficulties in school and even poor school attendance.
If families are left alone with their situation, and if children are overstretched with their caring responsibility, the families are in danger. They will try to uphold every day life, but a normal course of life is out of reach; this leads to a disruption in the process. If the illness remains a threat for the family, a vicious circle begins. The families totally close their ranks, some even isolate themselves. The children intensify their activities; everything is subordinated to the management of every day life; protection of the family dominates over everything. Negative effects of caring on the children's development will increase.
Family oriented support
Many families experience a lack of adequate support from outside, and they often don't even know of existing support services due to a lack of information. Professional advice coordinated by one central contact-point does not exist. For most children and their parents, emotional support has first priority. They want 'someone to talk to', professionals as well as peers. Furthermore, they expect and claim flexible and unbureaucratic help, which considers and respects their reality. A chronically ill mother said: "one phone number and I'd know, I am in good hands, they will help me and won't come with paragraphs and thousands of application forms. Within two hours I would get something with rhyme and reason, and I'd know how to move along." If – for example – a chronically ill parent wakes up with an acute attack of Rheumatism or Multiple Sclerosis, unable to get up, he or she wishes to be able to call one central number where low-threshold help will be organized. In this example, help could mean to have someone come over and pick up the children for kindergarten or school. Additionally, it may also mean that someone will help with cooking and cleaning that day, and a nurse may come and look after the parent. Many children also ask for age-based information and education about the illness and about the care needed. They want to understand and be able to help more sufficiently. A 14 year-old boy described, that his mentally ill (and single parent) mother sometimes is "different", he said: "then she cries and screams, she stands in the room and gazes at one spot for hours, and she cries and all that, and so it goes on and on." His reaction towards such situations is affected by uncertainty. The doctors, he said, always prescribe pills, but they don't tell him how to respond to help his mother. For children, whose parents are disabled, practical nursing skills stand in the foreground. Further needs are help with paragraphs and application forms as well as time out. The family's own input, combined with externally provided evidence based, family oriented support, determined by the family's specific needs, will help to overcome this vicious circle and support families in their effort to live in the way they wish to, despite chronic illness. Above all this, we need to take into account, that management of chronic illness is a dynamic process, and any change occurring in the course of the illness as well as in the family itself demands the reorganization of every day life.