Analogous to the previous review, the results in this section show that taking on various caregiving tasks in the family can have a positive [28] and also negative impact on their development [19, 23, 25, 32] as will be described in what follows.
Impact on family life
A chronic illness brings different changes in a family, which can be seen, for instance, in the surrounding circumstances: coexisting in everyday life, social interactions and utilizing leisure time [25, 28].
Children begin to watch their sick parents closely, noting exactly the good days and the bad ones. Worry is omnipresent in their daily lives [28]. They stay in the vicinity of the relative, spend most of their time at home and are prepared to carry out everything necessary to keep the family’s daily routine up and running [20, 23]. So these children bearing the responsibility of being caregivers have a different kind of relationship with their relatives than their peers who do not have an ill person within their family circle [30]. The illness and the changes in circumstances lead to a stronger emotional bond between the members of a family [20]. They have a strong “we-feeling” in the family, are satisfied with the family’s team spirit and are able to confront all the demands of everyday life [13]. Furthermore, a parent-child relationship is stronger if a parent has a physical impairment than if the disease is a psychological one [12]. Affected families frequently experience tensions and potential conflict [32], reaching from domestic violence via detachment from the family to considerable shifts in a family’s formation [29]. If one parent suffers from a mental illness and is thus unable to handle the demands of the family, it is usually the other healthy parent who becomes the head of the family and keeps everything running [14]. The children and adolescents do not only identify this shift in the parental structure but, above all, they acknowledge it; some of them develop a particularly close relationship, not to say a partnership, with the healthy parent. It is therefore not surprising that these children and adolescents want to protect the healthy parent and do not verbalize their own needs and worries [26, 32]. According to their relationship towards the mentally ill parent, they even suppress their own needs as they recognize the changes in the personality and behavior of the parent. Thus the communication from the children’s perspective becomes one-sided, and the relationship is increasingly characterized by compassion [26, 32]. In the Grounded Theory study by Mauseth & Hjalmhult [28], which examines the experiences of adolescents with a parent suffering from MS, it was found that the children’s successful internal conflict with the family’s situation depends greatly on the openness with which the parents confront their own illness, on the communication within the family and on the information about the illness itself.
Ortner [14] points out that the situation influences the family in various ways, depending on whether the mother or the father has become ill. If the mother, who has a familial “key function”, falls out due to illness, this affects the family’s daily routine within a very short time. On the other hand, if the father becomes ill, the effect on the family structure is of a long-term financial nature.
Many families suffer from financial restrictions due to an illness [13, 25], which also makes the acceptance of support more difficult. This is why the children prefer to take over caring roles [23]. The children are usually aware of the financial problems and do not have the courage to speak to their parents about money required for leisure activities or school trips [22].
Psychosocial impact
The emotional and social impact of young carers is well-described in the recent literature and comparable with the findings of the previous literature study. The psychosocial impact is not only influenced by the curvilinear course of the chronic illness and but depends also on the children’s involvement in caregiving [25].
Emotional impact
Children and adolescents as informal carers are frequently confronted with manifold emotions and feelings [33]. The negative emotions range from anxiety and guilt up to embarrassment through the affected family member. Fear both for [15, 27] and of the parents are typical for these children. They suffer when the parents are in pain or react with extreme anxiety if acute danger to life occurs. The children are afraid of their mentally ill parents when an acute psychological crisis takes place [13]. Such fears are constant, since the course of the illness and the care needed can hardly be predicted.
According to Ortner [14], a distinctive feature of families with a mentally ill member is that young carers are often confronted with feelings of guilt. Accordingly, they feel guilty and consequently remain mentally concerned about the family once they go their own way. Young carers feel guilty if they lose patience with their ill parent [13, 26], if they think that they cannot provide sufficient help for their ill parent [28] or if they perceive that other people are prepared to take on more tasks [29]. Again, others who grow up with a mentally ill parent are confronted with the accusation of not looking after him/her enough, which they then experience as upsetting [14]. Some children describe their experiences with caregiving as being unfair and unsuitable owing to age and developmental factors. They feel threatened and more overwhelmed than challenged [31]. It should in fact be noted that these experiences and the resulting stress are induced by “internalizing, such as depression, and externalizing behavior, such as aggression” of these children [33].
Feelings of shame or embarrassment are often felt by young carers [33] and their sick family members, which are usually in connection with intimate care, where such situations are difficult for both sides. For the children, it represents a big hurdle if, for instance, the father has to be accompanied to the toilet or the mother needs help with bathing [13, 17]. There are also some reports that, in certain situations, children feel ashamed of their physically impaired parent or of the assistive devices they use. They notice this particularly when they accompany their parents outside the home [13, 27]. This feeling of shame develops from the fear of being stigmatized [20].
Apart from these negative effects, other authors confirm that young carers reach an early maturity [5, 13, 15, 26] and greater independency [15].
Social impact
Children have to manage “changing complexities” and have to set priorities throughout their own social life [25 P.31]. Many of the children who participated in the study by Metzing [13] had numerous hobbies and fostered friendly relationships and only seldom they have to cancel a social activity due to their responsibilities at home, which they perceived as normalcy. For them, their home commitments are part of their life and are not felt to be a restriction.
In contrast, others have very little time for themselves, could hardly take part in social life and have only very limited friendly relationships – in some cases they were even socially isolated.
Impact on school life
Some young carers are victims of bullying and harassment at school [18, 21, 26, 29] and experience stigmatization [14] due to the diseases and psychological disorders of their ill family members. For some children, school is the place where they can forget about home, spend time with friends and be content about the free time gained [22].
In the study by Lloyd [21, P.76], a third of the identified ten- and eleven-year-old carers reported having been victims of physical violence at school (X
2 = 101.20, df = 2, p < 0.001; Cramer’s V = 0.17) and nearly half of them were bullied in other ways (X
2 = 765.69, df = 2, p < 0.001; Cramer’s V = 0.15). Conflicts outside the family are due particularly to the societal lack of awareness and knowledge about disease-specific personality changes. In addition, the fact that some children are scaled down to their parents’ illness and that the efforts they muster at home are not honored is a dramatic experience [22]. Their school friends are condescending towards them [18, 30]. From the perspective of the children concerned, not only their friends but also their teachers lack awareness and respect for their particular circumstances [22]. If these children are irritable when they come to school, or are discontented or get worked up about little things, then conflicts with their school friends can build up. They are unable to understand their own behaviour and get a bad conscience regarding their school friends, which increases the burden even more [34]. Young carers are isolated from their school friends; they are reserved and feel like outsiders [17, 25]. This exclusion also means that they have little contact with other children in similar circumstances [22].
According to several studies, some young carers find it difficult to master their everyday life at school [5, 13, 15, 18, 21, 25]. These children do not manage to combine their role in the family with the demands placed on them at school. Some children suffer from not making good progress in school due to their lack of concentration, and also worry about not getting good results which would mean they could not afford to study or support their parents financially in the future [13]. The results from Lloyd‘s survey [21] indicate the danger of lower educational expectations for young carers. According to some children, difficulties at school are due to the lack of parental support in learning at home; they miss the care and control of the parents with regard to homework [25]. Other reasons are: lack of time [5], distance to school, lack of understanding in their social surroundings [34]. In some studies, the focus is on school absences [13, 15, 25].
Physical impact
Comparable with the previous review, the studies contain only a few statements concerning the physical effects that living with a chronically ill family member can bring with it.
Lloyd [21] compares the health of ten- and eleven-year-old schoolchildren living in families without an ill person with the health of young carers of the same age. Although she comes to the conclusion that young carers estimate their health situation as less than excellent or very good in comparison with those of the same age and although this difference is statistically significant (X
2 = 14.12, df = 4, p < 0.01), the author points out that the correlation is weak (Cramer’s V = 0.061). Moreover, Nagl-Cupal et al. [5] also determine statistically significant adverse physical health effects for the group of young carers in their population of ten- to 14-year-olds. By identifying manifest symptoms such as sleeping disorders, tiredness, headaches and backache as physical effects, they confirm the results contained in the literature review by Metzing and Schnepp [3].
Needs
The studies describe a wide spectrum of young carers’ personal needs; however, the main wish is that the family may “continue to live as normally as possible” [13, P.127]. The children of course want the sick person to recover but it is not the disease that is in the foreground, it is the family as a whole [28]. If children were to receive the support needed to maintain the family’s daily routine, it would be a considerable relief not only for the family but also for the children themselves [13].
Maintaining the familial everyday life
Children involved in caring for a family member require professional, flexible support that is oriented to their actual life [13]. Affected children highlight particularly the necessity of having needs-oriented support that values the cohesion and intimacy of the family [32]. The study by Moore and McArthur [22] shows that families receive support with, for example, changing dressings, bathing, preparing medication, mobilization and transport. In addition, young carers emphasize that it would reinforce their own feeling of safety if these caregiving activities were supplemented by flexible, personal and emotional backing and monitoring by the relatives, especially if they are not located in the immediate vicinity of their home. From the children’s perspective this would greatly help to reduce stress in the family, avoid conflicts and strengthen the family’s solidarity [13, 20, 27].
These families are dominated by the fear of separation and tearing apart. As reported by Moore and McArthur [22], many of the study participants would very much like to get external support; however, the family is afraid that their situation would be criticized, the children removed and the whole family loyalty destroyed if offers of support were accepted [13].
It is important for children to receive practical and for their age appropriate help as well as counseling about the illness [13, 20, 27, 28]. They express the wish to have detailed information about existing counseling possibilities in order to get access to specific practical advice in connection with the disease [34].
Another important point is financial support for affected families so that they are not socially excluded and the children are able to participate. A chronic illness often leads young parents into disablement and occupational incapacity [13, 27, 34].
Attention, affection, mutual exchange
For young carers it is essential to receive recognition for the responsibilities they have taken on and also to experience support in their tasks [27, 29, 31]. Equally essential are familial appreciation and social perception [28, 33]. The children look for and find confirmation outside the family, in school, in their leisure time or in support groups [29, 31]. The importance of such programs lies in their main concept, which is to impart the recognition needed and to enable the young carers to feel appreciated [31].
Ortner [14] and Van Loon et al. [33] underline that intensive talks and closeness to the sick parent are particularly valuable for children of mentally ill parents because the child’s need for attention and affection can thus be satisfied. In cases where this does not seem possible and where the healthy parent is barely able to take over a protective function, the children long for someone to talk to about their situation. This person can be a more distant relation who is then expected to initiate the help required.
A special form of closeness and affection is frequently expected from contact to people in similar situations [18, 23, 27, 32]. In the children’s opinion, the schools could play an important role in identifying such contacts and helping to form networks [34].
In the living environments “school” and “circle of friends” the children look to their teachers and friends for a sympathetic approach, which could contribute to them feeling completely accepted and understood. On the one hand, they would like to talk about their own lives but on the other hand, they do not want to be forced to tell their whole life story [25].
The children also expressed the wish to be protected from bullying at school. In their opinion schools could do more to prevent bullying if the teachers were to change their approach to disabilities and diseases, taking a clear stance and trying to give the pupils a change in perspective. If this were to result in young carers losing their feeling of being in an exceptional position and of being different, then identification as a young carer could have a positive impact on their lives [34].
Having time and space for themselves
In order to achieve a temporary relief from difficult family situations, it is essential that the children and adolescents of mentally ill relatives find space and time for themselves [29]. Ortner [14, P. 196] calls this “being able to breathe” in order to “find some peace”. These recuperative phases strengthen them for the time with the family [29, 34] . In moments like that they want to have no responsibilities, do not want to think or worry about the familial situation, just want a good time and relax. They want to escape from the situation, build up social relationships outside the family [28]; freed from the responsibilities of caregiving, they want to search for their own identity and make plans for the future. Fulfilling these needs presents a way with which they can ensure sustainably both their own well-being and that of the family [29].
The wish for recreation and time off is underlined also by the children of physically ill parents, especially at times when they themselves are ill or when good performances are demanded of them at school or when a conflict situation arises in the family. Affected children want to be “simply just” a child [13]. They need time for friends and hobbies and to build up their own lives [13, 27, 28].
Coping actions
Children and adolescents in families with a chronically ill member take it for granted that they have to deal with the complex demands of everyday life on their own [13, 22, 28]. To cope with these demands, young carers try to find and maintain the balance between private and familial life [27]. To do this they use various coping strategies and “problem-focused and emotion-focused behavioral strategies” [28, P.859] .
“Helping others” is one of the most important active coping strategies [13, 17, 25, 30] and helps to reduce their own feelings of guilt and anxiety [30]. Many young carers refer to their daily tasks as their “job” which gives their role as caregiver a positive meaning, strengthening their feeling of pride, “being normal” and self-esteem [17, 27]. Since they are at all times prepared to help the ill member of the family, they are less worried and can manage the situations at home. At the same time, these children recognize their own competences and develop positive feelings of self-esteem [13, 17, 30].
In many families all the members try to distribute the tasks evenly among the resources available to them, i.e. shoulder them jointly [14]. If that succeeds, these children develop a very strong “we-feeling” in the family, are satisfied with the family’s team spirit and are able to confront all the demands of everyday life [13].
Another of the children’s coping strategies is to behave considerately towards their own family members [25, 30]. The children’s own needs are pushed aside and those of the family are accepted [22, 25, 28, 30]. There the children rarely mention being overwhelmed; they hold their own feelings back in order not to endanger the relationship to the family or to avoid an escalation that they might later regret [27, 34].
Putting the focus outside the family itself is another coping strategy [28]. Children of mentally ill parents particularly like to channel their energy outside family life, e.g. in hobbies [29]. They protect themselves by putting some distance – both spatially and emotionally - between themselves and the family [14, 27]. By moving into their own accommodation, some adolescents actively create a distance to the particularly complex situation of growing up with a mentally ill family member [14].
To have time for themselves is the strategy children apply in order to distract themselves from the home situation and to relax [27, 28].
A further meaningful form of coping is to talk about everything – whether in the family or outside [13, 18, 27, 28]. The young carers mostly talk to siblings, friends and people who have had similar experiences [15, 18, 26, 29] and only with a selected circle of friends from whom they can expect support [32]. Because these people are “simply there”, they are an important source of listeners for handling problems, reacting empathically to a particular situation [26, 32].
Withdrawal is the reaction of young carers if they feel themselves misunderstood or ignored by society, and is a frequently used strategy [27]. In order to protect themselves and their family, young carers sometimes ignore this type of behaviour [26], drawing back and saying nothing about their own life [13, 17]. In contrast, other children growing up with a parent who has dementia have found it beneficial to be open and to talk about the disease with other people [26].