The suffering goodness: an overview on experiences and needs from a group of young caregivers
Paola Limongelli
Catholic University of Milan, Italy
CORRESPONDENCE:
Paola Limongelli
e-mail: paolaenrica.limongelli@unicatt.it
Abstract
This article is aimed at prompting a preliminary reflection on young caregivers in Italy. These children, under the age of 18, regularly provide assistance to their family’s members (co-resident or not) with care and supervision needs. Carrying out regular care work during childhood results in significant consequences for their psycho-physical health. Although they perform a crucial role in their families, young caregivers are hidden in our society. Considering the special features of the phenomenon, a research was conducted with the aim to underline young caregivers’ characteristics. A focus group was created based on participatory research with students from a junior high school in the Municipality of Milan (Italy). The research highlights the motivations and consequences of these caregiving activities and the needs of some young caregivers in Italy.
Keywords
Young caregivers, childhood, care work, consequences and needs, social work practices.
Introduction
Young caregivers are a hidden group (Stamatopoulos, 2015) because of the particularity of their roles within their families. They are children and teenagers, not always of age, who regularly carry out care activities to support co-resident and non-residents family members with care and supervision needs. Generally, these needs are caused by chronic diseases, disabilities and psychosocial frailty (Becker, 2007). The assumption of care responsibilities generates negative effects and, in particular, dependence paths (Kittay, 2001). Even more so in childhood and adolescence, as it produces significant consequences for the psycho-physical health of young caregivers (Llyod, 2013).
Young caregivers take on care responsibilities with the aim to support their families, which are lacking welfare assistance. This happens in countries where the State lays on families the responsibility to take care of vulnerable people (Arlotti & Parma, 2020). Although young caregivers perform a crucial role in their families due to a family-based welfare model (it happens especially in Italy) (Esping-Andersen, 1999), they are hidden carers. This makes it difficult to develop the necessary social policy to identify and support them and their family. Their invisibility is also reinforced by the common imagine of childhood in our society that envision children and teenagers as care receiver and not as providers (Corsaro, 1997).
The goal of this article is to highlight the motivations that lead young Italian caregivers to take on care responsibilities, the consequences they are dealing with and their needs. Starting from some findings of one research on Italian caregivers, we will reflect on some social work practices and intervention useful for limiting the consequences of caregiving. This research, based on mixed methods (Greene, 2006), was aimed to understand the characteristics of Italian young caregivers. Specifically, its purpose was to define the extent of phenomenon, the socio-demographic dimension of care work, the type of care activities and care receivers, the motivations for taking on care responsibilities and the associated feelings (Decataldo, & Limongelli, 2021). For this reason, the research included a secondary analysis, a survey research, and a focus group, which is the only part considered in this paper. As a hidden group, young caregivers are particularly hard to reach both for social research purposes and the promotion of social interventions. For this reason, a research process with a participatory approach was carried out (Aldridge, 2015). Although the focus group might have some limits regarding its representativeness, the structure of participatory research has nevertheless allowed the development of reflections that are useful to shed some light on a phenomenon that is still too little known and studied in Italy. This research approach, which involves the people who are the object of the study, is particularly suitable for giving a voice to vulnerable and invisible categories. They are involved in the entire research process with the aim to democratise knowledge production (Ponic et al., 2010; Shaw, 2005).
The children who provide care
Young caregivers form an extensive group of children and teenagers that assume a relevant level of responsibility towards their family’s member. According to the international literature, there is an incidence ranging from 2% to 8% in each Western country (Joseph et al., 2019; Leu & Becker, 2017). Furthermore, the activities carried out are of different types and can be concerned to the following areas: personal care, sibling care, domestic chores, emotional care, household management and financial/practical ones (Joseph et al., 2019). As previously announced, care-receivers are some members of family even if they are adult (for example, mother or grandparents). Care needs could be determined by several issues: chronic illness, disability, mental health problems, and psychological and social frailties.
According to an English research (Omnibus Report) carried out in 2017 (Aldridge et al., 2017) on a sample of 420 young caregivers, 78% are engaged in practical activities such as cooking, cleaning, shopping, dealing with administrative and financial matters or helping with household chores; 22% are engaged in care activities aimed at supporting sick or disabled relatives; 57% provides emotional support. The research also showed that the commitment of young caregivers increases as they get older. The Omnibus Report shows also that the majority of the aid is directed to mothers, brothers and sisters and, only partially, to fathers and grandparents (Aldridge et al., 2017). A Switzerland study of 2018 highlights that out of a sample of 3,991 students between 9 and 16 years of age, 307 are classified as young caregivers. This finding shows that in Switzerland the phenomenon has a prevalence of 7.9%. These young caregivers assist their parents especially providing emotional support, personal care and with financial activities. The study also highlights that there isn’t significant difference between genders and that the average age at which they started the care work is 12.3 years (Leu et al., 2018). As regards Italy, different studies underline a significant involvement of children in care work aimed to support their family (Joseph et al., 2019; Leu & Becker, 2017). The data of the National Institute of Statistics (Istat)1 of 2015 shows that in Italy, out of 1.725 interviewed between 14 and 17 years of age, 43.8% declared to be engaged in care activities within their family. Among them, 1.3% less than 1 hour a week, 34.1% from 1 to 7 hours a week, 7.7% from 8 to 20 hours a week and 0.7% from 21 to 72 hours a week (Decataldo & Limongelli, 2021). Furthermore, according to the European Project of 2019 (ME-WE), in Italy there was an incidence of 6.6% of teenagers and young people, between 15 and 24 years old, with care responsibilities. (ME-WE Project – European Union, 2019). The data of a survey carried out in Italy in 2018 show that out of a sample of 424 students between the ages of 12 and 13, 19.3% of the interviewees carry out family care work one or more times a week (Decataldo & Limongelli, 2021). Furthermore, the activities most performed are those relating to emotional support, caregiving and personal hygiene (Limongelli & Decataldo, 2021). In the same research, 29.1% of the 424 students interviewed stated that they regularly care (several times a week) for one or more family members, such as mothers, siblings and grandparents (Decataldo & Limongelli, 2021). The most frequent causes for care needs are physical, psychological, and mental health and addiction problems (Limongelli & Decataldo, 2021). Despite the above data, the phenomenon is still little known in Italy. Therefore it is not surprising that Joseph and colleagues (2019) define Italy as an emerging country in relation to specific social policies and interventions regarding young caregivers. Their invisibility is aggravated by the scarce legal and social recognition of the phenomenon, which also affects the promotion of social policies essential to the support of children and young people with care responsibilities (Joseph et al., 2019; Leu & Becker, 2017).
However, carrying out at least one of the activities described does not mean the assumption of the role of carer. In fact, some of them are requested by adults to promote children’s and teenagers’ psychosocial growth. This is the reason why it is often challenging to identify this phenomenon. In order to understand the complexity of the phenomenon, Becker (2007) introduces the concept of continuum of caregiving, based on the assumption that at least once in their life children and teenagers may have carried out care activities. The continuum includes all children and teenagers who may be engaged in care activities to varying degrees, from «caring about» to «caring for» (Joseph et al., 2019). Activities related to caring about are the most common and are carried out by the majority of children and teenagers. These are mostly practical tasks, such as cleaning and tidying up. These activities do not generate significant consequences for their well-being. In the presence of one or more frail family members needing assistance, care and supervision, young caregivers might increase the level of their care responsibilities. Therefore, their position along the continuum would change from «caring about» to «caring for» a person. Indeed, young people would perform delicate and sometimes burdensome tasks, such as emotional support, personal care and/or medical care. Those who find themselves in this situation spend a considerable amount of time in informal care work; an improper and burdensome commitment for their young age (Becker, 2007; Joseph et al., 2019). According to Thomas et al. (2003), young caregivers provide care to more than one family member and, sometimes, they might be both adult.
Understanding the consequences and the need to promote social support
Young cares are subject to consequences peculiar to performing care tasks during childhood and adolescence (Lloyd, 2013). The deterioration of the overall well-being of carers generates precarious conditions for the psycho-physical development of children and teenagers. This considerably undermines their transition into adulthood (Abraham & Aldridge, 2010). Due to their considerable engagement in the family and the worries to be addressed, which sometimes trigger anxiety and stress, young caregivers have little time to dedicate to school and extracurricular activities, free time and aggregation. The tendency to drop out of school is also highlighted as one of the most harmful outcomes (Nagl-Cupal et al., 2014). As with adults in informal care work, young caregivers could be positively affected if properly supported, together with their family members. For example, they could achieve increased maturity, the ability to take responsibility, maintain stable relationships and develop resilience (Cassidy et al., 2014; Pakenham et al., 2007). The ongoing pandemic has considerably influenced the negative consequences of caregiving during childhood and adolescence. Anxiety and stress are greater due to the fear of infecting frail family members and for personal health. Furthermore, the closure of schools has reduced the personal time available to young caregivers. Staying at home a greater number of hours has made combining the time dedicated to the family with that to be dedicated to school activities precarious and difficult (Aitken, 2020).
Young caregivers could certainly express needs connected to having some time to be spent in leisure, aggregative and school activities. To achieve this goal, it is essential to support families with practical help taking into consideration the care needs expressed by each member (Moore et al., 2009). However, asking for help from people outside the family is challenging as young caregivers fear that they will be judged or it will affect their family (Mcandrew et al., 2012; Nagl-Cupal et al., 2014; Rose & Cohen, 2010).
As previously mentioned, there are still no adequate policies and social interventions in Italy in support of young caregivers and their families due to the lack of knowledge of the phenomenon (Joseph et al., 2019; Leu & Becker, 2017). In consideration of the consequences and social needs described above, it seems appropriate, especially in Italy, to start social work practises aimed at promoting a correct identification of young caregivers (in every area of their life) and developing interventions capable of enhancing their agency (Mcandrew et al., 2012; Nagl-Cupal et al., 2014; Rose & Cohen, 2010). The characteristics of the phenomenon considerably influence the evaluation that teachers and social workers can make of individual situations. Consequently, obstacles and, at times, extreme interventions are carried out, which would further jeopardise the situation of fragile families (Limongelli & Decataldo, 2021). Moreover, young caregivers tend to hide their difficulties and not to seek help of any kind, fearing repercussions on the family from the school or social services (Dearden & Aldridge, 2010; Rose & Cohen, 2010). Young caregivers, by taking care of their family members themselves, incur serious risks for their health. Therefore, it is necessary to start social work practices that proceed in two directions: on the one hand, to directly consider their point of view with respect to personal needs and family members; on the other hand, instead, to intervene in order to protect and guarantee an adequate transition to adulthood (Abraham & Aldridge, 2010; Aldridge, 2006; Rose & Cohen, 2010). Given the characteristics of the phenomenon, it is evident that it is appropriate to consider the entire family, which must also be evaluated, above all, as the bearer of useful resources for coping with problems (Folgheraiter, 2017) connected to care needs. Therefore, social workers should build relationships with them, based on trust and reciprocity, providing opportunities to explore and to cope with problems (Folgheraiter & Raineri, 2017), starting from their experiential knowledge (Beresford, 2010). Such knowledge results from having experienced certain situations, problems and the related coping efforts (Raineri, 2011). This way of implementing social work practices with young caregivers and their families is based on the Relational Social Work method (Folgheraiter & Raineri, 2017).
School also plays a vital role in the identification and support of young caregivers. From its vantage point, teachers can identify the phenomenon and interact with families to find aid paths. Therefore, building strong collaboration among educational institutions, social services, and local charities can help to mitigate the negative consequences generated by care responsibilities carried out during childhood and adolescence (Kaiser et al., 2015; Lakman et al., 2017).
Methodology
This study reports the results of a participatory research on the phenomenon of young Italian caregivers concluded in 2020 (Decataldo & Limongelli 2021). In order to understand the characteristics of the Italian phenomenon, the research followed mixed methods (Greene, 2006). For this reason, the research was based on a secondary analysis using Istat data (National Institute of Statistics) of 2015 (multi-purpose survey «Aspects of daily life»), a survey in some junior high schools of Milan (Italy), and a focus group with potential young caregivers. For this contribution, however, the findings of the focus group carried out in 2019 will be taken into consideration. The focus group aimed at understanding the peculiarities of the care work carried out during adolescence and the consequences suffered by young caregivers and their needs.
Because of the poor visibility of the phenomenon of young caregivers (Becker, 2007), which are defined as hard to reach, a participatory approach (Aldridge, 2015) to research was adopted. Participatory research can be defined in several ways. However, it is defined as an unconventional approach because it promotes the active participation of the people who are the research target (Aldridge, 2015). Moreover, a participatory research approach provides for using both quantitative and qualitative methods (Aldridge, 2015). Abma et al. (2019) define participatory research as promoting an approach in which a relational process can achieve the collective production of knowledge. The involvement of people, who have or are still experiencing a certain problem or life condition, can take place at any stage of the research. These key players contribute to the definition of the topic, the research question, the research methods, data processing and their dissemination. For this reason, they are defined as co-researchers (Cornwall et al., 1995; Lushey & Murno, 2015; Redmond, 2005). Participatory research takes in consideration the experiential knowledge (Beresford, 2010) inherent in people who experience a certain problem or condition of fragility in their lives. The co-researchers and the researcher work together, forming a research group called guiding group (Panciroli, 2019) or steering group (Stevenson, 2014).
In this study, three former young caregivers2 participated in this research as co-researchers. The guiding group worked together on each phase of the research. From the findings of the survey, students from a junior high school located in a district characterised by a low socio-economic background were selected. The selection was based on the students’ amount of time on care work carried out for their families. The focus group was chosen as it offers the possibility of gaining a great amount of information thanks to the group dynamics that are generated and which have the effect of enhancing the reflection of the individual, reaching areas that would otherwise remain unexplored (Acocella, 2012). The structure of the focus group was developed by the guiding group based on the research question (What are the characteristics of Italian young caregivers?). With the aim of protecting and putting the students at ease, the guiding group decided to develop the focus group with the support of the vignette technique (Bloor & Wood, 2006). In fact, this tool allows the participants to be able to respond without exposing themselves personally to delicate issues that sometimes generate embarrassment (Barter & Renold, 2000; Palaiologou, 2017). The vignette was developed by the guiding group starting from the keywords (Cardano, 2011) and consists of a text that tells the story of two young caregivers. The following is the vignette text.
«Anna is 11 and Marco is 14, they are two siblings and they attend the same middle school in the neighbourhood. Every day after school they have lunch, at their grandfather’s. Anna goes straight after school, while Marco first goes home to walk the dog they wanted so much out. Meanwhile, Anna takes care of their grandfather, who needs help getting out of bed and getting dressed and starts setting the table. Marco joins them and prepares lunch. After lunch, Anna stays to keep their grandfather company while Marco goes home to do his homework. At home, there is their mother who, as usual, is in her bedroom because she is not well, Marco always tries to keep her company».
In order to expand the results of the research activity, a co-researcher participated together with the researcher in the focus group. The co-researcher’s participation allowed to explore more in depth delicate and taboo issues related to care work and family dynamics. The guiding group performed a text analysis. Finally, the researcher performed the data analysis using the MAXQDA software – version 2018.
Participants
Four students from a junior high school in the City of Milan participated in the focus group. Compared to their classmates, they distinguished themselves by regularly carrying out family care activities during the week regardless of their young age, gender and citizenship. These characteristics suggest that they are potential young caregivers. Table 1, reporting the socio-demographic characteristics, shows that the participants come from families with frail members due to different issues. Such as mental health or addiction problems. However, one student did not manifest any specific social issue, although she was intensively caring for her family. In addition, the table also shows the degree of participation of the students during the research session (based on the number of statements and characters) (Table 1). It can be observed that two of the students were more active and livelier than the other two. The latter, however, also contributed through reflections rich in emotional content and examples of everyday life.
Table 1
Socio-demographic data and students’ participation in the focus group
Participants3 |
Gender |
Age |
Nationality |
Family care giving cause |
Statements |
Characters |
Francesca |
Female |
13 |
Italian |
Addictions and health problems |
206 |
12,791 |
Luca |
Male |
13 |
Italian |
Separation and single parent |
168 |
13,341 |
Kelly |
Female |
13 |
Philippine |
Addictions and health problems |
41 |
2,328 |
Fatima |
Female |
13 |
Egyptian |
No particular reason |
74 |
7,938 |
Findings
Why do children take care of their relatives?
The focus group made it possible to explore and address the motivations that lead to take on care responsibilities. According to the students, the problems that trigger the need for care and caregiving are different. For example, the conditions linked to the progressing of life (old age) or the presence of physical and mental health problems. Problems related to a poor socio-economic background are also explored, which can exacerbate an already difficult family situation. An example is the job loss by a family member and/or the family home. Although among the participants there was a student with a family member affected by addictions, this issue was not a subject of discussion. An example of how the students tried to interpret the vignette is shown below.
«It is the fact that it says [in the vignette] that the mother stays in her bedroom. […] well, because [she probably feels] pain, loneliness, hate, it could also be. So, I don’t know ... [she could also be] depressed, ill...» [Luca].
According to the students the conditions described above cause uncertainty and disorientation in the life of young caregivers. This is what pushes them to intervene in support of their families. Helping their families is the key to promoting their and the entire family’s well-being. This goal is not achieved through material assets but rather with the commitment to keep one’s family together despite its being a source of fatigue and suffering. The students unanimously declared that every sacrifice is justified by the need to guarantee their relatives’ well-being. This aspect is well described by Luca in the empirical material reported below.
«One thing that [is important] in this text, the only point that ... so many paths, so many difficulties, [the key to interpretation] can be loving each other, always the family, the main point […]» [Luca].
According to the students experiencing difficulties and helping each other is an opportunity to promote deep and strong bonds within the family. The greater the bond, the greater the chance of surviving family misfortunes. Union and harmony are transformed into the opportunity to achieve some form of happiness. This strengthening of ties occurs between caregivers and care-receivers and between all those who are engaged in care activities. The resulting union is so powerful to promote the carers’ perception of being part of a single whole, making it possible to face all obstacles and therefore to achieve well-being. This dynamic is clearly described by Francesca in the following segment.
«One soul and two bodies [...] practically this is the phrase I use with my mum, it’s like saying that they are, they are in two different bodies, but the soul is the same, that is, they are the same person, they understand each other. [She laughs] […] It’s a way to strengthen their relationship» [Francesca].
Alongside the search for well-being, the students also expressed the need to «look ahead», trying to assume a proactive attitude in the face of complications. The potential caregivers participant often describe their attempts to find solutions to daily difficulties, which must be found and tried again in order to reach a very coveted goal: the well-being of all family members. The continuous search for solutions for their family is strongly connected to the desire to feel good about themselves. In the absence of other viable alternatives for the family, children and teenagers feel compelled to be supportive as their personal well-being is based on that of the whole family. The pursuit of well-being and the attempts that lead to it inevitably have consequences such as the feeling of surviving. During the focus group, the participants expressed this perception through different concepts: daily struggle, commitment and responsibility, and the need to limit friendships and relationships to avoid further suffering. The search for well-being, therefore, becomes a daily struggle to survive that provokes feelings and emotions very different from serenity. Taking on caring responsibilities during childhood and adolescence generates ambivalence in young caregivers’ daily life. The desire for happiness for oneself and one’s family becomes a source of suffering and pain which, however, young caregivers do not escape. Below is Kelly’s statement.
«In any case, trying to move forward at any cost...» [Kelly].
In fact, the students interviewed refer to the protagonists of the vignette as responsible teenagers who face an extremely difficult phase in their life requiring all their energies. In describing this situation, the teenagers stated that they understand well the context in which the story told in the vignette takes place since it is a life situation that they also experienced. The students, in fact, expressed empathy and closeness towards the protagonists of the vignette, who «can only accept their own life and perform their task, even if it is painful».
Responsibility and commitment become central topics during the focus group, thus offering a better understanding of what carrying out care activities during childhood and adolescence means for the students. In fact, the teenagers seem aware that the care work carried out by Anna and Marco is a precious resource for the good of their family. The care tasks carried out by the protagonists of the vignette are described as an attempt to survive difficulties and, at the same time, as a strategy to achieve well-being, which generates ambivalent feelings: they vary between the desire to help and frustration felt while performing care tasks. Luca describes this aspect very well in the segment below.
«I mean, that is, an example is like when you can’t do something, that is, you try to do it, you give it all, to do something that you do for yourself, for someone else in your family, but you can’t do it so you carry some sadness and then that road that you say, “it leads me to be proud” is blocked» [Luca].
While carers feel that helping their family makes them feel good, their commitment also generates pain. The ambivalence just described was represented by the student through the metaphor of the heart made up of two faces, one smiling and one sad, or a heart pierced by arrows. An example is given below.
Fig. 1 Representation of the happy and sad heart (Fatima)
During the focus group session was debated the parenting topic. The teenagers gave a limited description of their parents’ role presenting them mainly as adults in difficulty. Luca tries to describe the relationship between the siblings and their mother.
«[…] but the problem is also the fact that, for example, his mother who stays at home and does not have all the time to take care of her children, to be attentive, to see what they do, whether they suffer or not ... so it is also another problem that he cannot solve, so Marco and Anna should deal with it by themselves...» [Luca].
It would seem that the students understand the difficulties experienced by adults. For this reason they perceive that the protagonists of the vignette are alone in dealing with their needs. Subsequently, the teenagers participating in the focus group wonder about the nature of the care tasks and declare that many of those described in the vignette should actually be the responsibility of adults. Different opinions with high emotional content emerge from the discussion, as is shown in the segment below.
[She raises her voice] «I understand, but just think of an eleven-year-old who instead of maybe, for example, play with her friends or have a normal childhood, at 11 is already taking care of her grandfather, which is something that should be usually done by her mother, right?!?» [Francesca].
Care work during childhood
The vignette was also found to be effective in detecting some types of care work experienced by the interviewees. During the focus group, the students made explicit references to concrete examples, revealing, once again, their commitment within the family. Among the examples reported, they mentioned activities referring to both house management and the care and assistance of family members. Moreover, the participants were also able to reflect on other care needs not mentioned in the text of the vignette. The following is an example.
«[…] Oh well. Personally, I don’t think she [Anna] goes back home. […] I don’t think so. [...] Because seeing that her grandfather can’t get up if at night he wants to go to the bathroom or something he can’t go, that is, he can’t, so maybe she should stay with him, for me it’s not likely that she goes back home» [Fatima].
Performing caring tasks produces several negative consequences, including feelings of guilt. As previously described, being on the front line generates the desire to have a lifestyle similar to their peers. However, expressing it arises a strong sense of guilt in the carers for wanting more freedom, time and attention from the adults. The students state how risky it is to devote a lot of energy and time exclusively to the care of one’s family. Moreover, they are well aware that the protagonists have little time available for school and friends. They worry that Anna and Marco, due to their commitment, may not have the necessary space to grow and improve. The following is a segment describing this aspect.
«Anna will have time to be with her grandfather, but she has like less time to do something else. Everything ... is a vicious circle!» [Luca].
In this sense, it is repeatedly stated that the carrying out of care activities prevents the protagonists of the vignette from living «a normal childhood and adolescence». Moreover, as a further consequence, the students also identify Anna’s and Marco’s lack of light-heartedness. Tiredness, regret and stress generate in the participants the desire (and the need) to lead a life like ordinary teenagers. These contents are expressed with different feelings (from anger to sadness) during the focus group, as can be seen in the transcript below.
[She lowers her voice and gaze] «Sadness for not having the same childhood that other kids have, maybe you see your schoolmates who every day at 4 go to the park to play; instead, they go to help the family, so sadness» [Fatima].
Another consequence is related to the lack of trust in their peers. The students describe that Anna and Marco could limit their ties with friends who cannot protect their secrets. The four participants in the focus group recognise and understand that at the root there is the anguish of protecting their family and the need to avoid their peers’ judgement. The segment below describes this aspect.
«Sometimes trusting too much is bad, maybe it is one thing to open up but not too much, because if you find the wrong person, maybe it talks about your private things, like to the whole school, that is…» [Francesca].
The students often express the desire to «have a normal life» but, despite this, they very reluctantly consider seeking the help of other reference adults. This is mainly because they fear it will affect their family. The participants openly declare that they have little trust in adults who do not belong to the family unit, in particular in social workers or psychologists and teachers.
«No, I really don’t trust psychologists much, I’d rather open up with my friends ... I don’t know why, but the fact of talking to strangers, that is, above all psychologists, from what I understand they are not really reliable ... eh ...» [Fatima].
«Not reliable ... because some of them can cause you more problems» [Luca].
«[…] that is, they might contact the social workers about something you said or they can tell your parents or teachers...» [Francesca].
For the participants, the only source of support comes from family members supporting each other as they are sure not to be betrayed but fully understood.
«I think that they can vent but not with friends or with a very reliable friend or they can vent like ... Anna and Marco can let off steam together because there is certainly trust between them and none of them goes around telling because they are siblings… so I think, if I were Anna or Marco, I would unload with my sisters» [Fatima].
The students while talking about Anna and Marco also highlighted the young caregivers’ needs. During the focus group, various issues were examined: from the need to understand the situation to the need to have more time for themselves to relax and connect with their peers. Although they have little faith in other people, there is a strong desire to be able to exchange their views with someone without being judged for the situation at home and the emotions experienced. In the absence of reference points, the participants in the focus group describe several alternatives that might help one to feel better. For example, some write a secret diary, others take refuge in reading or sports. Although they did identify some good strategies, the desire of being understood emerged considerably during the discussion. According to their point of view, this is possible above all when speaking with those who have lived the same experience. Francesca’s statement represents an example of this latter aspect.
«In the end, you need to talk to people who have had the same problem as you have and who may have managed to get out of this situation, so in my opinion, it is like that» [Francesca].
The students also express the need of obtaining practical help to be exempted from or supported in their care tasks. However, seeking help is perceived as betraying their families as they fear that the problems might be disclosed and their family experience negative repercussions. This increases their guilt for seeking support and feeling tired.
Discussion. The «suffering goodness» of young caregivers
The process carried out through the focus group, although it involved the participation of only four students from junior high schools, allowed for a preliminary study on the care work carried out by teenagers. The co-researchers of participatory research affirm that the synthesis of the content of this focus group can be expressed with the words «suffering goodness». In fact, from the analysis of the empirical material it emerges that young caregivers intervene within their family because they feel obliged to contribute to the achievement of the well-being of each member, even the most fragile ones. However, the search for a balance or an improvement of the situation requires a huge sacrifice (Lloyd, 2013): giving up the light-heartedness typical of adolescence. Their commitment requires energy, time and dedication that cause stress and frustration due to their huge responsibilities. In this sense they experience a strong ambivalence from an early age: on the one hand, they recognise that their well-being is connected to that of their family; on the other hand, care responsibilities generate suffering and frustration. Family becomes the answer to every action and sacrifice, so much so as to lead to a strengthening of family ties and to limit relationships of trust with friends (Cassidy et al., 2014; Pakenham et al., 2007). The tendency to seek solutions and look ahead, even if with fatigue and suffering, highlights a typical characteristic of young caregivers (Booth & Booth, 1998). It the end, this situation produces negative consequences affecting their transition to adulthood (Abraham & Aldridge, 2010; Aldridge, 2006; Rose & Cohen, 2010).
As they put all trust in family’s relationships, for them it is very difficult to feel safe to talk about their situation with peer or other adults, or even to ask help. For this reason, social interventions should take into account young caregivers’ tendency to hide their situation. Moreover, it should be remembered that young caregivers’ personal well-being is linked to that of their family. Despite the frustration and efforts, young caregivers try to cope with difficulties with the aim to keep the family together. Therefore, it is necessary to provide social interventions in favour of both children/teenagers and their whole family (Mcandrew et al., 2012; Nagl-Cupal et al., 2014; Rose & Cohen, 2010). In this sense, it is crucial not to consider the families of young caregivers as deficient but as a resource from which to start planning the appropriate social interventions. In this perspective, social workers should listen also to the voice of young caregivers in order to understand their point of view with respect to problems, needs and possible solutions (Abraham & Aldridge, 2010; Aldridge, 2006; Rose & Cohen, 2010). In this way, their agency is recognised, and resilience and empowerment are stimulated (Cassidy et al., 2014; Pakenham et al., 2007). In a context of listening and understanding, in the absence of judgement, the conditions are established so that young caregivers can trust and ask for help. In fact, the results of the focus group highlight that young caregivers need to express themselves in a safe place where they can also feel free to talk about the difficulties experienced in their families without feeling guilty (Mcandrew et al., 2012). Other types of interventions that emerged from the focus group’s analysis relate to immediate and practical support to be assisted or replaced in care responsibilities (Moore et al., 2009). Finally, leisure, aggregative and school activities should also be provided. The need to have some time for themselves and their schoolwork were a central topic in the focus group and, therefore, should be considered when identifying forms of support. For this reason, in order to achieve these objectives, it is advisable to initiate synergies and partnerships between schools, social services and local charities (Kaiser et al., 2015; Lakman et al., 2017). This collaboration would create the opportunity to develop networks of solidarity and proximity in favour of the families of young caregivers. Despite the collective imaginary portrays teenagers in a subordinate position to adults (Corsaro, 1997), they prove to be capable of contributing to the family and aware of its difficulties. Given the enormous contribution and personal cost they pay, it is essential to follow adequate social paths aimed at identification and support.
Conclusions
Although the findings in this study are based on a small research sample, they highlight some important characteristics of the phenomenon. The research sheds some light on the motivations, feelings, and needs of young caregivers. Such overview prompted us to define young caregivers’ experience as «suffering goodness». A definition that stresses the urgency of investing on research, social policies, and social work practices and intervention aimed at providing them and their families with adequate support.
References
Abma, T., Banks, S., Cook, T., Dias, S., Madsen, W., Springett, J., & Wright, M. T. (2019). Participatory Research for Health and Social Well-Being. In Participatory Research for Health and Social Well-Being. https://doi.org/10.1007/978-3-319-93191-3_13
Abraham, K., & Aldridge, J. (2010). The Mental Well-being of Young Carers in Manchester. Who Cares About Me? In Manchester Carers Forum. Retrieved from http://info.lut.ac.uk/microsites/socialsciences/ycrg/youngCarersDownload/MCF_Full_Report_2.pdf
Acocella, I. (2012). The focus groups in social research: Advantages and disadvantages. Quality and Quantity, 46(4), 1125-1136. https://doi.org/10.1007/s11135-011-9600-4
Aitken, M. (2020). Young Carers in a time of COVID. The Journal of Contemporary Community Education Practice Theory, 11(Covid-19 Supplementary Issue).
Aldridge, J. (2006). Children Living with and Caring for Parents with Mental Illness. Child Abuse Review, 15, 79-88. https://doi.org/10.1002/car.904
Aldridge, J. (2015). Participatory Research. Working with vulnerable groups in research and practice. Bristol: Policy Press.
Aldridge, J., Cheesbrough, S., & Harding, C. (2017). The lives of young carers in England: omnibus survey report: research report. Government Social Research, 59. Retrieved from https://www.gov.uk/government/publications/the-lives-of-young-carers-in-england
Arlotti, M., & Parma, A. (2020). Politiche di LTC e disuguaglianze nel caso italiano : evidenze empiriche e ipotesi di riforma. Politiche Sociali, 1, 125-128. https://doi.org/10.7389/97338
Barter, C., & Renold, E. (2000). “I wanna tell you a story”: Exploring the application of vignettes in qualitative research with children and young people. International Journal of Social Research Methodology, 3(4), 307-323. https://doi.org/10.1080/13645570050178594
Becker, S. (2007). Global perspectives on children’ s unpaid caregiving in the family: Research and policy on “young carers” in the UK, Australia, the USA and sub-Saharan Africa. Global Social Policy, 7(1), 23-50. https://doi.org/10.1177/1468018107073892
Beresford, P. (2010). Re-Examining Relationships Between Experience, Knowledge, Ideas and Research: A Key Role for Recipients of State Welfare and Their Movements. Social Work & Society, 8(1), 6-21. Retrieved from http://nbn-resolving.de/urn:nbn:de:0009-11-26956
Bloor, M., & Wood, F. (2006). Keywords in qualitative methods : a vocabulary of research concepts. Thousand Oaks: Sage Publications Ltd.
Booth, T., & Booth, W. (1998). Resilience and competence. In Timothy Booth & W. Booth (Eds.), Growing up with Parents Who Have Learning Difficulties (pp. 20-92). London: Routledge.
Cardano, M. (2011). La ricerca qualitativa. Bologna: il Mulino.
Cassidy, T., Giles, M., & McLaughlin, M. (2014). Benefit finding and resilience in child caregivers. British Journal of Health Psychology, 19(3), 606-618. https://doi.org/10.1111/bjhp.12059
Cornwall, A., & Jewkes, R. (1995). What is participatory research? Social Science & Medicine, 41(12), 1667-1676. https://doi.org/10.1016/0277-9536(95)00127-s
Corsaro, W. A. (1997). The sociology of childhood. Thousand Oaks, CA: Sage publications.
Dearden, C., & Aldridge, J. (2010). Young Carers : Needs , Rights and Assessments. The Children World: The Comprehensive Guide to Assessing Children in Need, 214-228.
Decataldo, A., & Limongelli, P. E. (2021). The Young Caregivers. A Research on the Italian Case. Autonomie Locali e Servizi Sociali, XLIV(2), 227-244. https://doi.org/10.1447/101451
Esping-Andersen, G. (1999). Social foundations of postindustrial economies. New York: Oxford University Press Inc.
Folgheraiter, F. (2017). The sociological and humanistic roots of Relational Social Work. Relational Social Work, 1(1), 4-11. https://doi.org/10.14605/RSW111601
Folgheraiter, F., & Raineri, M. L. (2017). The principles and key ideas of Relational Social Work. Relational Social Work, 1(1), 12-18. https://doi.org/10.14605/RSW111602
Greene, J. C. (2006). Toward a Methodology of Mixed Methods Social Inquiry. Research in the Schools, 13(1), 94-99.
Joseph, S., Sempik, J., Leu, A., & Becker, S. (2019). Young Carers Research, Practice and Policy: An Overview and Critical Perspective on Possible Future Directions. Adolescent Research Review, 5(1), 77-89. https://doi.org/10.1007/s40894-019-00119-9
Kaiser, S., Schulze, G. C., & Von Ossietzky, C. (2015). Between Inclusion and Participation: Young Carers Who Are Absent From School Steffen. Journal of Cognitive Education and Psychology, 14(3), 314-329.
Kittay, E. F. (2001). A Feminist Public Ethic of Care Meets the New Communitarian Family Policy. Ethics, 111(3), 523-547. https://doi.org/10.1086/233525
Lakman, Y., Chalmers, H., & Sexton, C. (2017). Young carers’ educational experiences and support: A roadmap for the development of school policies to foster their academic success. Alberta Journal of Educational Research, 63(1), 63-74.
Leu, A., & Becker, S. (2017). A cross-national and comparative classification of in-country awareness and policy responses to ‘young carers.’ Journal of Youth Studies, 20(6), 750-762. https://doi.org/10.1080/13676261.2016.1260698
Leu, A., Frech, M., Wepf, H., Sempik, J., Joseph, S., Helbling, L., … Jung, C. (2018). Counting Young Carers in Switzerland - A Study of Prevalence. Children & Society, 33(1), 53-67. https://doi.org/10.1111/chso.12296
Limongelli, P., & Decataldo, A. (2021). Riconoscere e supportare i giovani caregiver. Riflessioni a partire da una ricerca partecipativa. In V. Calcaterra & M. L. Raineri (Eds.), Tra partecipazione e controllo. Contributi di ricerca sul coinvolgimento di bambini e famiglie nei servizi di tutela minorile (pp. 219-239). Trento: Erickson.
Lloyd, K. (2013). Happiness and Well-Being of Young Carers: Extent, Nature and Correlates of Caring Among 10 and 11 Year Old School Children. Journal of Happiness Studies, 14(1), 67-80. https://doi.org/10.1007/s10902-011-9316-0
Lushey, C. J., & Munro, E. R. (2015). Participatory peer research methodology: An effective method for obtaining young people’s perspectives on transitions from care to adulthood? Qualitative Social Work: Research and Practice, 14(4), 522-537. https://doi.org/10.1177/1473325014559282
Mcandrew, S., Warne, T., Fallon, D., & Moran, P. (2012). Young, gifted, and caring: A project narrative of young carers, their mental health, and getting them involved in education, research and practice. International Journal of Mental Health Nursing, 21(1), 12-19. https://doi.org/10.1111/j.1447-0349.2011.00762.x
ME-WE Project – European Union. (2019). Enabling young carers to pursue their goals in life and reach their full potential – Converting research findings into policy actions. Country Focus : United Kingdom. Retrieved from https://me-we.eu/wp-content/uploads/2019/05/Me-We-European-brief.pdf.
Moore, T., McArthur, M., & Morrow, R. (2009). Attendance, achievement and participation: Young carers’ experiences of school in Australia. Australian Journal of Education, 53(1), 5-18. https://doi.org/10.1177/000494410905300102
Nagl-Cupal, M., Daniel, M., Koller, M. M., & Mayer, H. (2014). Prevalence and effects of caregiving on children. Journal of Advanced Nursing, 70(10), 2314-2325. https://doi.org/10.1111/jan.12388
Pakenham, K. I., Chiu, J., Bursnall, S., & Cannon, T. (2007). Relations between social support, appraisal and coping and both positive and negative outcomes in young carers. Journal of Health Psychology, 12(1), 89-102. https://doi.org/10.1177/1359105307071743
Palaiologou, I. (2017). The use of vignettes in participatory research with young children. International Journal of Early Years Education, 25(3), 308-322. https://doi.org/10.1080/09669760.2017.1352493
Panciroli, C. (2019). La ricerca partecipativa nello studio della povertà. Lo sguardo del Social Work. Trento: Erickson.
Ponic, P., Reid, C., & Frisby, W. (2010). Cultivating the power of partnerships in feminist participatory action research in women’s health. Nursing Inquiry, 17(4), 324-335.
Raineri, M. L. (2011). Il valore delle conoscenze esperienziali. In P. Donati, F. Folgheraiter, & M. L. Raineri (Eds.), La tutela dei Minori. Nuovi scenari relazionali (pp. 87-101). Trento: Erickson.
Redmond, M. (2005). Co-researching with Adults with Learning Disabilities. Qualitative Social Work: Research and Practice, 4(1), 75-86. https://doi.org/10.1177/1473325005050200
Rose, H. D., & Cohen, K. (2010). The experiences of young carers: a meta-synthesis of qualitative findings. Journal of Youth Studies, 13(4), 473-487. https://doi.org/10.1080/13676261003801739
Shaw, I. (2005). Practitioner research: Evidence or critique? British Journal of Social Work, 35(8), 1231-1248. https://doi.org/10.1093/bjsw/bch223
Stamatopoulos, V. (2015). One million and counting: the hidden army of young carers in Canada. Journal of Youth Studies, 18(6), 809-822.
Stevenson, M. (2014). Participatory data analysis alongside co-researchers who have down syndrome. Journal of Applied Research in Intellectual Disabilities, 27(1), 23-33. https://doi.org/10.1111/jar.12080
Thomas, N., Stainton, T., Jackson, S., Cheung, W. Y., Doubtfire, S., & Webb, A. (2003). Your friends don’t understand: Invisibility and unmet need in the lives of young carers. Child and Family Social Work, 8(1), 35-46.
Author and article information
Limongelli, P. (2021). The suffering goodness. An overview on experiences and needs from a group of young caregivers. Relational Social Work, 5(2), 43-59, doi: 10.14605/RSW522103.
Relational Social Work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License
1 A multipurpose survey on Aspects of Daily Life of 2015, https://www.istat.it/it/archivio/129956.
2 We would like to thank Margherita Garello, Samia Ibrahim and Chiara Menescalchi for their precious contribution throughout the research process.
3 The names of the participants are fictional to protect their privacy.