Young carers: growing up with chronic illness in the family - a systematic review 2007-2017

Children and adolescents under the age of 18 who provide care, assistance or support for one or more chronically ill family members are called young carers [1].

According to a former comprehensive review [2, 3], these children provide help and care at any age, and the amount of their tasks increases with age. There is a wide range of young carers’ duties described in the literature. They become involved in all areas of housekeeping and care; in summary it can be stated that they do the same as adult informal carers. However, a common categorical system could not be identified, which makes comparison between study findings difficult. The extent of their help varies and depends on many factors, i.e. the severity of the chronic illness, family constellation, the family’s economic and emotional deprivation, lack of outside support and the process of being socialized into care. More than half of young carers live with single mothers who predominately suffer from chronic somatic diseases. Positive as well as negative effects are described in the literature: young carers show an increased sense of self-esteem, early maturity, a close relationship towards their parents and some feel well prepared for life. Negative impact relates to the children’s physical, psychosocial and educational situation and further development [2, 3].

According to the British census from 2011, the prevalence of young carers between five and 17 years of age is 2.1% for England and Wales [4]. Nagl-Cupal et al. [5] also identified relevant extrapolations from the USA, Australia and New Zealand, in which the (estimated) prevalence rates range from 3.2% up to 4.2%. However, the basic population in these surveys varied considerably according to the age of participants, which again makes comparisons difficult. A representative Austrian survey with school pupils identified a prevalence rate of 4.5% for children between ten and 14 years [5]. Projections for the age span between five and 18 years for Austria indicated a rate of 3.5%. Becker [6] showed rising numbers of young carers worldwide in his presentation during the 2nd Young Carers Conference “Every child has the right to…”, hosted in Malmö this year. He estimated prevalence rates varying between 2 and 8% in selected European and transatlantic countries. To date, comparable data for Germany is missing. Corresponding to other countries young carers in Germany remain a hidden population that is hardly perceived in the societal awareness.

For this reason, the German Federal Ministry of Health put out a prevalence study among school pupils in Germany to gain more insight into young carers’ everyday life. In preparation of this survey and since the above-mentioned literature review was published in 2007 [2, 3], we carried out an updated literature study which is the object of the present contribution.

The method we decided on for this literature study was a systematic review. As we intended to gain an explorative and comprehensive overview on the existing knowledge concerning young carers, we made this decision in order to include studies of all designs [7] (qualitative and quantitative ones) as well as literature reviews written in English or German. All available studies were systematically identified according to explicit methods, selected, and critically appraised; the findings were extracted, listed descriptively and summarized. Everything was based on the existing standards of Higgins and Green [8].

The overall aim is to summarize the body of knowledge about young carers’ lives with a special focus on their personal experiences, needs, coping behaviors and impact of caring in order to raise awareness of these children’s everyday life and to develop compassion in society towards this phenomenon. Thus, we aim to answer the following general question with focal and operationalized sub-questions:

Two researchers carried out the methodological steps parallel: literature search, data extraction and quality evaluation; the results of these steps and any ambiguities or uncertainties were discussed with a third member of the research group and then summarized.

Data analysis was carried out thematically and interpretively according to our research questions. In a first step, all the publications included were coded openly. Emerging themes were identified and matched with similar ones (topics). In the next step, these topics were thematically structured in concepts in a categorical system using the software program MAXQDA. Finally, we were able to synthesize all of the publications [7]. The analysis was conducted by two master graduates and a senior researcher.

The systematic search resulted in 2283 publications being found. After rejecting the duplicates, screening the remaining titles and abstracts and applying to the in- and exclusion criteria, 48 publications were subjected to a critical appraisal. Of these 25 studies were finally included in the review (Fig. 1).

Tables 1 2 3 4 5 6 show a differentiated picture of all the publications considered.

These categories are described in the following.

New study results confirm the existing knowledge about characteristics of young carers according to age, gender, family constellation, care recipients and variety of caring tasks, as summarized in the former literature review from Metzing & Schnepp [2, 3].

Children in single households are still more likely to be involved in caregiving than children whose parents live together [12–14]. Study findings also confirm that care is provided for chronically ill mothers in the majority of cases [5, 15]; the results on this aspect vary between 67 and 75% [12, 13, 16–20]. Apart from the mothers, it is often the grandmother who receives care from young carers, followed by chronically ill siblings. Less often do young carers care for male members of the family [5, 15, 21].

If children are involved in caring, it can take up a lot of time in their childhood. In a qualitative study, 50 children between the ages of nine and 22 stated that they were involved in helping in their family for “7–10 years”, “more than 10 years” or “all the time” [22]. The results presented by Nagl-Cupal et al. [5] also show the enormous amount of time that young carers spend on supporting their families; they identified great differences between non-caregiving and caregiving children in the category “[help] more than 5 hours daily”. Young carers have no freedom of choice about the tasks they take on at home [17, 23]. The amount of these tasks depends on the care and support needed, and varies according to the course of the disease and the stress involved [13, 15, 19, 24]. According to the Austrian school survey [5], 15% of the children and young carers are very often completely on their own with their caregiving duties. However, slightly less than a third (31%) also stated that they share their duties with a healthy parent. Sharing the responsibility with a healthy sibling is more seldom the case (17.1%). These findings also showed a significantly higher percentage of girls as caregivers (69.8%) in comparison with non-caregivers girls (52.7%) [5]. This gender-specific difference has proved to be statistically significant (F(1, 128) = 4.98, p = 0.03) in other studies with a quantitative research design [24]. However, Lloyd [21] did not find a gender-specific difference in her sample of 4192 Irish pupils aged ten and eleven.

There is a wide spectrum of tasks and responsibilities that are taken over by children, as study results show. This includes the emotional and practical support for other members of the family [5, 14, 15, 19, 21, 23–28]. Two of the included studies developed a categorical system from their available data [13, 19]. In her Grounded Theory study, Metzing [13] focused on the recipients of help and care to organize the inductively derived categorical system (Fig. 2). Ireland and Pakenham [19] in their study generated a multi-item scale of care tasks with the four categories “instrumental care, social/emotional care, personal/intimate care and domestic/household care” [p. 713] through factor analysis.

The process of children becoming young carers is an increasing topic in recent literature concerning young carers when compared to the previous review. Becoming a caregiver is influenced by the children’s motives, the way in which they adapt to their new role and the resources available within the family itself. The following passage deals with these factors.

It depends on the resources (for instance, the number of shoulders available in the family) as to how much responsibility the family can assume.

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.

The objective of this review was to expand on a previous literature review [2, 3] and to bundle anew the internationally evolved knowledge about children and adolescents as informal carers.

In comparison to the previous review where the situation of young carers was mostly the subject of research in Great Britain, the United States and Australia [2, 3], further studies from those countries and first results from German-language countries and Norway have become available in the meantime [5, 13, 14, 27]. Based on the included studies, it has been possible to confirm and consolidate the previous knowledge about the characteristic attributes of children and families concerned. In addition, studies could be included that focus i.e. on how these familial caregiving arrangements originated [e.g. 5, 13, 15, 25] and also reviews concerning the children’s coping management [e.g. 14, 17, 26, 30]. It has furthermore been possible to identify theoretical models that help to describe and explain the phenomenon of “young carers” [13, 25]. However, further research is required since aspects such as gender or migration have up to now either been disregarded or hardly noted. The results of the current review are discussed in the following.

To date, internationally significant figures on the prevalence of young carers are lacking. The reasons are to be found in the methodical challenges, since due to the expected low prevalence a large sample is required in order to be able to identify the target group at all. It is also extremely difficult to gain access to the target group [5, 23, 27, 35]. During the whole research period only one survey from Austria was identified [5], the results of which could be roughly compared with the previous parameters from Great Britain [4, 36]. Another German-language survey is currently in the data analysis phase.

Characteristic attributes of young carers are similar to each other but these are shown in different ways in the studies. Empirically based systems of categories showing young carers’ activities are indeed available [e.g. 5, 13, 19] but internationally are not applied homogeneously so that only a limited comparison of study results from different research groups is possible. A further difficulty for comparing results lies in the varying age definitions for young carers in other countries [2], particularly in Australia where young adults up to 25 years of age are included in the surveys [12, 16, 19, 22, 24, 34, 37].

Both qualitative and quantitative study results show a higher proportion of girls as young carers. Up to now, the theoretical explanation for this phenomenon has hardly been the subject of research interest and gender-specific studies on young carers are one of the largely unexplored fields so far. Considering the fact that family caregiving these days is usually a woman’s affair [38], the authors find that it is important not to lose sight of this gender-specific difference in order to prevent girls taking up “early caregiving careers” [5].

Several studies have focused on the motives for taking on caregiving tasks as well as on the influencing factors and on various reasons for the development of these familial caregiving arrangements [5, 13, 25]. This knowledge can help the support system to recognize the interaction between favorable risk and influencing factors in order to react in time to stress in the family and to meeting their needs. This could prevent the children suffering from disadvantageous effects and overwhelming later in life. It is indeed difficult to identify the point in time when a child takes on a caregiving role, since the increasing help and support needed is described in most cases as a slow, drawn-out process [13, 25, 32]. Nevertheless, the literature shows that there are specific diseases, such as multiple sclerosis or dementia [24, 26, 32], where certain points of time during the course of the disease should be given more attention, e.g. at diagnosis or when a new flare or attack occurs.

Current study results confirm both positive and negative influences on the development of caregiving children and adolescents as a consequence of the amount of caregiving involved [5, 13, 19, 23, 25, 32]. If, because of their caregiving role, young carers are unable to participate in activities suitable for their age and sphere, this has an adverse impact on their lives and social isolation becomes a threat. Emotional effects such as worry, sadness and anxiety or shame and fear of stigmatization are additional aspects about which they do not like to speak and which lead to the young carers withdrawing from their social networks, making life even more difficult for them. To prevent this happening, it is necessary to build up social awareness and eliminate taboos about this theme; the support system must show empathy and be attentive so that warning signs can be recognized in time and appropriate actions taken. At the same time research for retrospective surveys is necessary to get a better understanding for the impact on later life and to develop adequate prevention methods.

The physical effects of the caregiving role of affected children are rarely the subject of discussion in current studies. Only McDonald et al. [15] and Nagl-Cupal et al. [5] point in their studies to the implications for young carers’ health, which is a surprising result considering the manifold and physically strenuous support some children and adolescents provide. A possible reason for this may lie in the nature of the study designs here. With one exception, the studies are concerned with one-off cross-sectional surveys with mostly quite young participants. Physical effects such as chronic headaches or exhaustion and particularly long-term consequences like backache, postural deformities or addiction cannot be portrayed in the existing studies. Here, too, longitudinal studies and retrospective surveys are called for.

Some of the children concerned manage to develop strategies to counteract their own situation. Findings relating to their coping management are a new theme identified in international literature [13, 16, 17, 25, 27, 29, 30, 32], in particular the search for and building up of new relationships with similarly affected children and adolescents. Such relationships of trust enable young carers to talk about their own circumstances, to feel understood, to be outside their own home and able to speak freely. Other strategies are to create space outside the family or to deliberately commit themselves to helping other people in order to experience a feeling of esteem. Some of the young carers inform themselves about the disease in question and the support available, or are either consciously open about the situation or avoid confrontation by withdrawing. Coping management also involves connoting the support positively in order to reduce their own burden.

For young carers to succeed in dealing well with their specific situation, needs-based and service-oriented support is required. A family-oriented perspective is vital as well, looking at the family as a whole [39, 40].

From the findings of this literature review, the following concrete practical recommendations for supporting young carers can be derived:

• Cooperation with the German Child Welfare Association to initiate regular workshops in schools on the subject “young carers” in order to develop empathy among teachers and peers and to prevent the stigmatization of young carers.

• Health professionals should be sensitized towards the specific situation of these families/children, thus developing their empathy towards those concerned. The target should not be just to find access to the families but also to create a trusting relationship to them in order to develop individual solutions for each family and to put these into practice by working closely with the families.

• It is imperative that physicians, carers, child and family psychologists should take care that the balance between the familial life of the children and their social life is sustained. The findings in this review may be able to help the support system to identify and classify the extent and type of help given by children. “Gaps” in the family resulting from the illness may be recognized and the specific needs estimated of both the young carers and their ill relative. A true and individual picture of each family can be achieved if influencing and risk factors are perceived (e.g. family constellations, financial, familial and social resources etc.) [41]. Providing relief for the families can contribute to the children having more time and space for their own needs [42], thus resulting in a framework for coping.

This literature review may have several limitations. a) Only publications from peer-reviewed journals and qualified articles known to the authors were taken into consideration. This means that good quality studies that had been published by the authors themselves or as monographs were not identified. b) The “interpretability” can be influenced when analyzing large studies with varying study designs and measuring instruments. To deal with this problem, data analysis was carried out thematically. The identified topics were structured thematically in concepts to facilitate interpretation of the results per outcome category. c) A further possible limitation may be the heterogeneity of the young carers‘ages. However, the authors were unable to have any effect on this problem because it is not mentioned explicitly in the studies.

The subject “young carers” has received increased attention in the international scientific community over the last ten years. The studies included in this review answer questions concerning ways of life, needs and requirements as well as the coping management of young carers. Future research should be directed towards specific disease patterns, towards the integration of children from families with dependence syndromes and also take aspects such as gender and migration into consideration. Furthermore, there is still a need for retrospective studies and long-term observations.