‘I don’t think people know enough about me and they don’t
care’- Understanding and Exploring the Needs of Young
Carers from their Perspective
Saima Tarapdar
Abstract
Young carers have attracted increased attention over the past decade, yet it remains an
overlooked topic of discussion within the welfare system and for policy makers. To
overcome this, the project aimed to achieve a far more detailed understanding of young
carers, whilst offering a new perspective from one young person to another, and
producing eventual recommendations of changes in strategy and policy, thereby giving a
platform to young carers.
This research was undertaken by a young person generating peer-peer data which is an
under-researched perspective and one that is inaccessible to older researchers. Through
the method of snowball sampling, the present study yielded 5 young carers aged 13-18. It
was commensurate with previous studies, which found that the young carers felt
opposing tensions in undertaking an adult task and parental role. On one hand, they felt
obligated and valued their role, whilst also perceiving it as a burden on the other.
However it was a resounding conclusion that the latter far outweighed the former in
summing up the experience of caring.
Nonetheless, it was the deficit in the supply of services which created the greatest
problems for the young carers, than merely the caring role itself. Specifically, feelings if
isolation emerged from the maintenance of duties with little or no support from formal
services. But similar to Early et al’s (2006) study, the young carers were reluctant to be
supported from the formal services as they thought exposure may do more harm than
good. In reality, the young carers required greater assistance to integrate and continue
caring through informed decisions. Subsequently, the recommendations produced in this
study focus on increasing awareness and re-educating governmental bodies, key
agencies, teachers, peers, and others alike, of the changing experience of young carers.
Key words: young carers, young people, social injustice, parenting, formal support,
isolation
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Introduction
This research has been designed and undertaken by a young person and constructed
entirely from a young person perspective. It is important to emphasise this at the outset,
because data collected young person-to-young person is different from adult-to-young
person since there are less power issues and we converse using the same peer language.
This improves our understanding between one another in a way that is not possible for
older researchers.
Background of informal care in the UK
Informal care is a system of providing care by close family or friends and is
predominantly unpaid (Dearden 2001: 1). Caring in adult-hood has been the centre of
growing attention during the past 20 years because of the phenomenal increase in life
expectancies within the West, thus resulting in a growing elderly population and rise in
the experience of chronic illness and disability (Becker 2002: 34; Burns 2003: ix). This
has led to a rise in demand for caregivers and a growing dependence on many family
members to provide care (Burns 2003). As Hancock suggests; ‘the vital role of the carer
is beyond question’, but their contribution is unacknowledged by many, in addition to
being met by an under-provision by formal care networks and public policy (Hancock
and Jarvis 2004). Carers reduce the drain on public resources by saving the government
billions of pounds a year and yet their voices are only recently beginning to be heard
(Hancock and Jarvis 2004: 70).
Much research has followed on from these concerns, which have given valuable
insight as to who carers and recipients are, the variety in the tasks carried out by carers
and the impact of caring (Arber and Ginn 1991). For example, the largest recipients of
care tend to be partners, mainly husbands and elderly parents who have reached the
fourth age, married women and single adult children as the largest providers of care
(Arber and Ginn 1991). Most interestingly, the focus from research remains on the costs
of caring to the carer; in terms of the time, effort and physical and economic resources
(Hancock and Jarvis 2004: 1). For example, LoGiuduce (1998) found that carers showed
restrictions in social interaction and recreation similar to elderly arthritis sufferers, and in
some cases, the task of caring was considered more debilitating than the illness of
arthritis itself (LoGiudance 1998: 345).
Such research illuminates to the situation of adult carers but this excludes
somewhere in between 51,000 (Walker 1996: 11) and 175,000 (Census UK 2001) young
people in the UK who are defined as young carers. Imprecise figures of young carers
further add to the need to channel resources to this area, particularly when the trend of
Western society points towards increasing divorce rates and smaller family sizes, putting
greater pressure on diminishing family members- mainly children (Dearden and Becker
2003). In response to this, the past 15 years has seen a rise in research of young carers,
from predominantly a descriptive stance, so as to identify the extent and nature of care
giving by young people (Dearden and Becker 1995; Aldridge and Becker 1995). This has
been coupled with national surveys from the Young Carers Research Group at the
Loughborough University. Both types of literature have been able to illuminate the plight
of young carers and also raise awareness of their economic and social status (Aldridge
and Becker 2003).
Young carers
Young carers are: ‘Children and young persons under 18 who provide or intend to
provide care, assistance or support to another family member…who often carry out
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significant caring tasks and assume a level of responsibility associated with an adult ’
(Becker 2000). This definition is important, as it provides two levels with regard to
researching young carers. Firstly, it provides the base from which to describe the
characteristics of young carers specific to their age. Secondly, it gives direction to focus
the effects of caring, and more specifically, as a role associated with an adult.
Importance of age:
In regards to the first level of the definition, young carers are characterised into
the following demographics:
Figure 1.0
Social class
Young people from disadvantaged backgrounds are most likely to take on the
responsibility of caring (Becker, Aldridge, & Dearden, 1998; Tatum & Tucker, 1998).
The role of the young carer is made worse by what Bibby and Becker refer to as the
‘financial disempowerment’ of young carers who face a catch22 situation of making
the decision between receiving Invalid Care Allowance or continuing education. Bibby
calls this ‘being burdened by poverty as well as caring responsibility’ (Bibby and
Becker, 2000: 40).
Age
The average age of young people supported by projects is 12 years, and between
siblings, the eldest is burdened with the majority of tasks (Dearden and Becker 2003:
3).
Gender
The caring role does not discriminate between genders since, 57% of young carers are
girls and 43% boys. Thereby, demonstrating equality in the distribution of gender
whilst highlighting the difference in characteristics compared to adult carers in which
two-thirds are female (Dearden and Becker 2003: 9).
Family structure
Over half of carers are in lone parent situations, although this has decreased from 60%
in 1995 to 54% by 1997. But this is above the average of lone parents in the UK at
23% (Haskey 1998).
Care recipients
These are mainly mothers and or siblings with 1 in 10 providing care for more than one
person (NCR 2007: 3). In the case of both parents, this is 12% of young carers
(Dearden and Becker 2003: 10).
Nature of illness of recipient
56 % of young carers care for parents with physical health problems. The nature of
illness dictates the type and level of care provided (Dearden and Becker 2003: 2).
Caring tasks
This is dependent on the family structure and the nature of illness. The main tasks are
categorised into:
(i) Domestic – (the most common task) refers to tasks such as cleaning and
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maintenance of the home (Dearden and Becker 2003).
(ii) General – refers to nursing-type tasks such as administering medication (Early et al
2006)
(iii)Emotional- providing psychological support, and supervision. This accounts for
84%of the young carers in the 2004 Young Carers Report.
(iv) Intimate- assisting with toilet requirements of the parent (Young Carers Report
2004: 7). This is considered the most distressing and has increased dramatically since
1997 (Young Carers Report 2004: 3).
Undertaking ‘adult’ tasks:
In regards to the second level of the definition, young carers ‘are involved in
levels or types of care that are developmentally inappropriate and that may have adverse
effects on their development and health’ (Becker et al., 1998). Indeed, the
inappropriateness of the action of caring whilst being exposed to inadequate support is a
theme held by many studying young carers. Dearden (2003) likens caring at a young age
as the inverse of the socialisation process in which adults become dependent on their
children (Dearden 2002: 34). Chase (1999) describes this as ‘parentification’ process
rather than caring alone. This view focuses on the adult nature of the responsibilities and
the impact this may have on the child’s development adjustment.
The role ‘may be functional to a young person’s development; however a
distinguishing feature of family care-giving surpasses the boundaries of what is
normative or usual given the individual’s age and relationship to the care recipient’
(Schulz & Quitter, 1998: 170). Indeed, even young carers who face lower substantial
caring commitments continue to face the difficulties associated with caring on a rigorous
and demanding level (Bibby and Becker 2000: 11).
Consequently, debate concerning the protection of young carers has grown in
response to this (Dearden and Becker 2002). Yet the impact of such awareness has had
little effect considering the that only 18% of young carers were assessed under the
Children’s Act (1989) and only one fifth of all young carers and their families receive no
other support except for their contact with a specialist young carers project and the social
services (Young Carers Report 2004: 12- 15).
Further social welfare literature has highlighted other negative outcomes specific
to young carers, including poor school attendance, loss of social opportunities, impact on
future plans and independence, bullying, social stigmatisation and isolation (Aldridge and
Becker 1993). Yet the effects of caring are not so clear cut. In the 2004 Young Carers
Report, it found that the overall incidence of missed school and educational difficulties
reduced, from 45% in 1995 to 27% in 2003, but this coincided with the figure that one in
three young carers thought that the teacher did not know they were a carer. This has an
important impact on the perception that others have of young carers, as their lack of time
to carry out homework or negative impact of caring can be perceived by teachers as
laziness or being dumb (Young Carers Report 2004: 14). Dearden points caution to the
fact that not all young carers experience severe difficulties in education, however, there
does appear to be an impact on the extent to which young carers are able to make best of
their educational opportunities (Dearden and Becker 2003: 4).
Similar to the aforementioned Young Carers Report, Bibby and Becker (2000)
found that not only were teachers uninformed, but so too were fellow pupils. This may
explain research from The Princess Royal Trust for Carers which found that 71% of
young carers had been bullied (Bibby and Becker 2000: 16).
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In terms of the physical, psychological impact and long term prospects, young
carers face an increased incidence of stress and depression from the insecurity in the
parents’ health, own poor health such as back problems from lifting parents and they
restricted opportunities in life (Bibby and Becker 2000: 12- 19). The long term impact is
demonstrated in the 1999 report; On Small Shoulders by Frank and Tatum, which found
that 70% of carers had long term psychological effects from caring and 40% had long
term mental health problems. Specifically, tensions arise since the carer values the role on
one hand, whilst feeling that it is a burden on the other (Early et al 2006: 158).
Way forward
Such studies, although illuminating, have suffered from a number of conceptual
and methodological short comings (Damiani 1999; Stoneman, 1989). Firstly, the large
scale surveys only include young carers supported by specialist young carer projects.
Understanding the lives of all young carers is required, but this means including those
that are considered statistically hidden. Once this is done, can research uncover the true
picture of young carers?
Second to this, the more qualitative and psycho-social literature disassociates the
social model of disability from the medical model. This means that focus remains on the
negative aspects of caring without elaboration from the young carer themselves. Only
once this is achieved, can there be greater evidence of the true experience of young
carers. Thirdly, both qualitative and quantitative research are unable to give young carers
the opportunity to provide their own recommendations as to how they want their position
to be improved in society. This is crucial, considering that many young carers have little
contact with formal agencies (Bibby and Becker 2003).
Aims of the study
The primary aim of this research is to achieve an understanding as close to the
reality of young carers as possible, more so than previous studies undertaken by older
researchers. This will not only contribute to the existing data of informal care and of
young carers, but also provide a more recent analysis of the young carers’ situation. The
method of data collection adopted was in-depth telephone interviews. This was chosen to
facilitate access to young carers distributed around the UK and, as a young researcher
with no research funding, I could not afford to travel to do face-to face interviews.
Through this method, the study aims to ascertain the extent to which growing awareness
and changes in policy have impacted on young carers.
Secondly, this projects aims to offer a new perspective; that of a young researcher
to another young person. Subsequently, this leverage allows the research to probe into
areas other research may not have access to. It gives a chance for young carers to voice
their opinions away from the gaze of adults, thus adding to the richness of the data, and
aim of achieving a better insight into the reality of young carers.
Finally, the study aims to produce recommendations about policy and practice,
not by what objective agencies think- but based on concerns by young carers themselvesultimately, and most controversially, what changes should happen.
Methodology
The project used qualitative methods in order to fulfil the project’s aim of gaining
an understanding of the reality of young carers, from their point of view. Through
snowball sampling methods, the researcher conducted in-depth telephone interviews with
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5 young carers in England. This is a small-scale study which cannot claim to be
representative of all young carers. However, it does provide a qualitative snapshot of the
experiences of some of the ‘hidden’ carers and those who have little or no contact with
formal services.
Semi-structured interviews were used as it allowed the study to ask questions of
personal experiences and provided an opportunity for young carers to share their
knowledge and views of caring, whilst maintaining full anonymity. Full disclosure of the
intention and purpose of the study, and the fact that it was from the perspective of one
young person to another, established trust and ensured transparency in the absence of
intimidating power relations. The interviews were able to probe areas beyond current
perception. In fact, the anonymity of the telephone helped to promote disclosure as it
ensured that the respondents felt comfortable discussing personal information, thus
adding to their openness, and eventual richness of the qualitative data.
Ethical considerations were prominent throughout since the study delved into very
personal and sensitive issues, often on issues they had not recognised before. All
respondents made informed consent to participate through the transparent knowledge of
the nature and intention of the study, before the interviews had taken place. Such
transparency and awareness enabled participants to feel confident when disclosing
personal information. In addition, confidentiality and anonymity was maintained
throughout the interview and in analysis and the use of pseudonyms was adopted
Profile of participants
Figure 2.0
Tom is 13 years old and has been caring for 3 years for his disabled father.
Katy is 14 and has been caring for 10 years for her disabled father.
David is 15 and has been caring for his mother, who has depression, and his younger
brothers most of his life.
Tina is 17 and has been caring for 5 years for her disabled mother.
Julie is 18 and has been caring for 15 years for disabled mother.
Results
In the analysis of the findings, the following categories emerged from the data:
Experiences of the young carers:
(i)
The normalisation of carrying out ‘parenting’ tasks
(ii)
Magnitude of carrying out ‘parenting’ tasks
(iii) Physical restrictions, stress and strain
(iv)
Guilt
(v)
Isolation and loneliness
(vi)
Comparison to peers
(vii) Societal misconceptions- caring becomes easier
(viii) Societal misconceptions – pity
(ix)
Paradoxes of caring and social injustice
(x)
Learning life skills, time management and understanding disability
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Young carers perception of reform:
(xi)
Micro View: changing the structural support
(xii) Macro view: changing societal perceptions
Difficulties of caring
(i)
The normalisation of carrying out ‘parenting’ tasks –
‘ She doesn’t do much so I have to do everything for her, take care of her, look after and
clean her, paying the bills, that sort of thing, um yeah, its hard work sort of (David.)
The young carers varied in the number of years of their lives they dedicated to
caring; ranging from 3 to 15 years. In some cases, this was the length of the young carers’
lives, yet consistent with all responses was normalisation of carrying out parenting tasks;
‘I think I am just used to it now to tell you the truth. It’s silly to say, but you get
used to the way it takes over your life and how much you gave up. I just can’t see what it
will be like in the future’ (Katy).
This substantiates Bibby and Becker’s research which found that the differing
caring commitments and the number of years they had been caring were non reflection of
whether caring was more or less of a burden. All the young carers were able to integrate
caring into daily lives, regardless of the magnitude of the tasks.
In normalising the responsibility into daily lives, the young carers became unclear
of what a so called ‘normal’ childhood should consist of, and what their experience had
become;
‘I guess over time my role is less intense, or maybe I am more used to it? I don’t
know, but life doesn’t get any easier, there are just more things in the way. To be a carer
doesn’t mean that you do all of the things for the person. It also means doing odd things
here and there for a long time, giving up a part of your life. Its all about taking on a new
responsibility’ (Tina).
Thus, all aspects of caring were internalised into the coping mechanisms of the
young carers to include even strenuous and demanding tasks. Outside of this context, the
performance of care-giving roles at a young age would be categorised as a young person
at risk, yet with the case of young carers, they are regarded as being able to manage these
tasks. Such experiences give young carers a different experience of caring in comparison
to adult carers, since they are more accepting of caring and are unable to distinguish
between tasks suitable for a young person and those that need outside help.
(ii)
Magnitude of carrying out parenting tasks –
‘Caring is where the mum becomes the child and the child becomes the dad’(David).
As an extension of point (i), the young carers realised their work as parenting,
evident in the use of reverse terminology such as ‘babysitting’. The parental aspect of
caring is an idea also accepted by Chase (1999), and thus, indicating the greater impact of
caring in comparison to previous studies which had focussed on merely the adult nature
of tasks. This demonstrates different experiences of caring young people receive in
comparison to adult carers.
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Indeed, the damaging effects of the role- reversal is demonstrated in the idea that
caring left the young carers feeling ‘like I am 50 inside cos I have been through so much
in such a short period of time’ (Tina). Such psychological and developmental adjustment
leaves the young carers to grow up much faster than their own, and societal expectations
of appropriate behaviour for youth. For example, the young carers carried out parenting
tasks, even if they were physically unpleasant and psychologically difficult to get used to;
‘I wash her up as she sometimes poos herself, I know its weird and stuff… I
thought she was clued up, sometimes she’s there and other times she isn’t’ (Tina).
This supports Dearden’s (2003) research which found that caring was considered
an inverse of the socialisation process in which the parent becomes dependent on their
children, regardless of their choice on the matter. In addition to this, the young carers
were well aware of the inverse, thus explaining why they found it ‘weird’. Despite the
inexperience of dealing with such situations, the young carers had overcome their
inhibitions and socially ascribed boundaries so as to maintain the task of caring. As a
result, young carers were required to adapt and learn how to deal on all levels of caring
for their parent, regardless of the cost borne upon them.
Both the experiences of normalisation of the parenting role and dealing with the
responsibility are intrinsic to the caring role. This is most evident in the way caring tasks
were intertwined with all aspects of school life;
‘In the morning before I go to school, I wake up early, give him his medicine, and then go
to school, then come back home and give him his medicine at five o’clock, …and do the
shopping a bit of everyday for stuff…then at night I have to lock the door and check, cos
we have a big house, I have to check if there’s anyone there’ (Tom). When asked how he
felt about such roles, he said ‘it was hard’, but ‘you get used to it’. As a carer he felt that
he had double the responsibility in that he was; taking on responsibilities in place of his
father, in conjunction with caring for his father.
(iii)
Physical restrictions, stress and strain
‘I don’t go out that much. I just can’t be bothered at the moment to tell you the truth, I
haven’t the energy…. its been a long time since, since I’ve been completely FREE!’
(Katy).
The stress and strain of caring was derived from the restriction of freedom it
posed, rather than from their inability to cope;
‘I would say that the time is the worst thing as it’s hard to fit everything in one day and
then you have no time for yourself’ (Julie).
When probed further, Julie said, ‘like with school work and stuff, that would be
hard, but now I am into a routine, but it’s when I get like big projects. That’s when it’s
like umm hard. You have to figure out, what do you do first when you get home’ (Julie).
Such time dedication, led to the neglect of the pursuing of recreational activities.
For example, it took Tom 2 years of caring to realise that he had to pursue leisurely
interests; ‘I have to now, before, I was like, I can’t go out, I gotta do lots of things for
everyone, but after 2 years, I have to (Tom).
In addition, the restrictions imposed from caring caused stressed whilst leaving
little time to deal with it:
‘I think it’s just having to do everything, that gets me stressed and down. Its’ so
tiring and stressful… I mean I got my own problems, and as a teenager you have your
own problems like friends, stress from essays and stuff and just coping with life and
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knowing what to do, and that’s enough for most teenagers to get into drugs and stuff like
that. But then I have all of that and I am also a carer, so I get all the crap that comes
along with that’ (David).
The young carers considered themselves to have triple sources of stress; that of
worrying about their parents’ health, from the physical strain of caring itself, and of
having no time to deal with one’s own youth problems. This supports Bibby and Becker
(2000) and Tatum’s (1999) idea that caring has negative effects on the physical and
psychological health of the young carer both in the short and long term.
Indeed, the extent to which stress from caring was rooted in the task is evident in
the neglect of the young carer’s state of health. This arose not only from having the lack
of time to deal with stress, but from the young carers’ determination to prioritise the
needs of their care recipient;
‘I can’t change it and I just have to get used to it and cope with it the best I can cos then
I would have let down my mum if I can’t cope with life’ (David).
As a result, caring creates moral pressure on young carers to maintain family
commitments well beyond social expectations and their own physical and psychological
limitations, deriving from the relationship between the carer and the care recipient. The
nature of relationship between the two affects the experience of caring and the extent to
which it is negative, since pressure to maintain caring comes from the young carer’s own
judgement of the situation. Such personal pressure has detrimental effects on current
activities in addition to future decisions. This supports Aldridge and Becker’s (1993)
findings that caring has negative outcomes for young carers in terms of future plans and
independence. For example, on his thoughts of going to university David had the
dilemma of, ‘do I stay at home or stay in London? I mean I have no choice if you put it
like that and I always have to think about how close I can be to mum (David).
(v) Guilt - I mean I would like to be totally selfish, but if I can’t(Julie).
Along with such feelings of personal pressure to maintain the caring role, the
young carers often felt ‘guilty’ and ‘selfish’ for thinking about themselves, from the
smallest tasks of taking time to do homework, to thinking about the future of moving
away to university; ‘lately I have been such a bitch cos I have been doing my own things
like (Tina).
The extent to which caring plays a burden on the young carers’ conscience is
evident in David’s dilemma;
‘Like the idea of moving away or having a life feels like I am ditching my mum
and that really hurts. It’s like I am betraying her by just thinking about these things.
There’s a lot of guilt towards that you know. You know it’s hard and I am constantly
making decisions like this. It’s so hard but I know I can’t be like this my whole life and
that will be really hard when or if it does happen.’
The guilt originates from the feelings that they have more to accomplish in life,
yet ‘finally having a life’ is considered the equivalent to an emotional betrayal. As Tina
said, ‘I am young, I know it sounds really bad but I am just starting my life and it feels
like it will end as I have to make a decision between looking and worrying about my
family and making decisions about my life (Tina).
This guilt transcended into the compromises the young carers made. Tom said,
‘It’s been quite hard because if I want to go out or revise, I have to look after my dad. So
it makes it hard, sometimes if I have a test, and he goes into hospital, I go instead to the
hospital instead of doing my work.’
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The young carers also felt guilty for disclosing feelings concerning the difficulties
of caring; ‘But that’s not saying that I don’t love my mum, but if I said that there were
good things about it, then you are ignoring the hard work that I’ve done for my mum all
by myself, you know (David). Indeed, the theme of guilt experienced by the young carers
is similar to that found by Early et al (2006) in which young carers experienced a great
deal of tension from valuing their role, whilst feeling it as a burden. As a result, the
findings so far support Hancock and Jarvis idea of caring as a negative experience,
defined in terms of costs forgone- be it physical, psychological, or economic. But in
contrast to adult carers, the costs affect the future potential of the young people.
(iv)
Isolation and loneliness‘Sometimes, I don’t know who to ask for help….I mean its just that there is not enough
advice out there’ (Julie).
So far, the results have provided a view of caring as difficult which may
lead to low life satisfaction (both long and short term), thus supporting the medical model
of disability. However, caring is not considered as simply difficult by nature. The task of
caring is made more difficult and considered as contributing to feelings of loneliness
because of the inadequate provision of assistance by formal agencies. The deficit in the
supply of services according to the young carers’ requirements and the lack of
transparency of information, was considered restrictive, an idea supported by many
advocating the social model of disability (Bibby and Becker 2000).
The situation was addressed by Tom’s feelings that ‘no one really cares about
what I do, and my work’ (Tom). Consequently, the inadequate existence of support added
to the cycle of not asking for help or feeling that they could ask for help even when they
needed it, which leaves the young carer alone and isolated;
‘I know it sounds selfish but I was so alone ‘cos no one was helping me and I also didn’t
want anyone to help. They weren’t there for me at first, so why should I ask them for help
now?!’ (Tina).
In describing the structural inadequacies faced by young carers, David poignantly
summed up his situation in the following;
‘What they forget is how much a carer suffers on their own having no body else. You are
so alone and there is no one and you do so much and suffer so much on your own and its
only at the last straw when I can’t cope or eat or when I am stuck in a corner that I would
like tell a teacher or something… There has to be more done to help, how it should be.
Like when I have money problems, I have no one to turn to and that should be helped
with. I have no safety net and no one to ask when I can’t afford bread or the bills. I mean
I think there should be more so much more that could be don’ (David).
Themes of isolation only add to the negative outcomes associated with caring. Yet
in focussing on the social model of disability, blame of low life satisfaction experienced
by young carers moves away from the parents- towards blaming the inadequate state
provision of services and awareness. Thus, in formulating a general idea of the
experience of caring for young people, it appears that in the immediate to short term,
taking care of the parent is debilitating to the young carer in which the state of the
parent’s health causes anguish and feelings that the role itself is difficult. In the long
term, however, the carers are not provided with sufficient support to deal with the
fluctuating role of caring along with their own social life.
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(vii) Comparison to peers
‘It makes me different from other people. Its hard.. I feel different to my friends because
they do normal stuff and don’t really know about stuff I do’ (Tom).
All evidence points towards the idea that caring was considered a task with
negative repercussions, but the complexity of such, moves focus towards other problems
with societal structures in the form of young carers’ relationship to their peers. In the
young carers’ comparison to their peers, they were made aware of their difference, and
thus how being a young carer was different to being a young person. They felt they were
responsible for someone, rather than being responsible to an adult, which differed from
the social norm and thus was considered abnormal. Julie said, ‘its hard.. but I don’t know
anything else… its not something that you can get used to though, because you see all
your mates who have such different lives and stuff’.
Indeed, the restriction of freedom as described in point (ii), coupled by the
comparison to peers added to the overall negative experience of caring as they realised
what they gave up in order to care for their parents, regardless of normalisation process of
caring. ‘And it is bad because I am caring at a young age and so I can’t do the things that
my friends do. I am doing things that someone older should be doing but I have no
choice…I guess there is more bad than good’ (Tom).
In this way, the comparison to peers formed the benchmark from which the young
carers based the costs of caring on, a more complex idea than Hancock and Jarvis’ (2004)
study suggested. The social construct of caring supports both the medical and social
model of disability in which the comparison to peers made young carers realise the
source of stress resulting from the act of caring itself. It too led to the social
misunderstanding of caring in which young carers have no choice other than to label
themselves as ‘different’, and resultantly were unable to perform their roles as young
people.
(viii) Societal misconceptions- caring becomes easier over time‘People say, ‘oh it’s been 3 years now’ but I can’t get used to it. I don’t think people
understand’ (Tina).
In regards to the magnitude of caring, there appears to be an inverse relationship
between the age of the carer and the help provided, reinforcing the idea of the social
model of disability in explaining the difficulty of caring for young people. For example,
Julie found that ; ‘it (caring) has got more as I got older… people expect that I can do
more and that I am also bigger so I can pick her up and stuff like that. I think people help
out less when you get older’ (Julie).
The young carers thought this misunderstanding came from the idea that, the older
the carer, and the longer that they had been caring, the less help they required as they had
got used to the role or that it had become easier to deal with.
‘People think that just because you are 17 that you should be able to handle it all. But I
think that things would have been a lot easier if I had finished all of my education’
(Tina).
Although the young carers had not met the legal definition to adulthood, they
were considered as more than capable of performing difficult tasks as described, because
they were considered as young carers and not as young people. The extent, to which
young carers regarded it as a mistake, is evident in the reality that the caring role was not
static. The manageability of undertaking the caring role fluctuated alongside their
11
parent’s health and also in response to changes in the young carers’ own life. Tom said
that over the years its ‘harder, cos he’s getting even more sick, over the years.’
Assumptions of capability over time, before adulthood, therefore lead to a gap in the
demand and supply of services and may provide further evidence for isolation
experienced by young carers.
(ix ) Societal misconceptions - Pity –
‘They see you like as if you are quite fragile…hahaha, or that I’m a typically strong
person. I mean you don’t have to be all the time sort of thing…. You see people make
judgements about you and they don’t know anything’ (David).
Another misconception in contrast to the previous point, was that young carers
were incapable of performing their role as a young carer;
‘They are kinda like over sympathetic, kinda way. You know what I mean, like wow that’s
what you do? I don’t think they get what I do though. But sometimes it’s just too much. I
don’t need that kind of attention (Julie).
The young carers felt an aversion to the idea of being pitied by people, and
therefore they were unlikely to ask for assistance or disclose their situation to people,
which added to their feelings of isolation;
‘I mean I am getting on with things and I’ts hard but I have got through it and I don’t
want pity or anything. That’s probably why I have done it all myself. It’s like they look at
you in a different way like you cant handle it. I mean you don’t want someone to feel
sorry for you. That’s all, you want help when you want it. Not when it suits them’ (Tina).
To be pitied was considered a reflection that their caring role was a problem, and
thus their parent was a problem, however, the young carers were adamant that this was
not the case;
‘It’s just when you are at school, you it’s more like people notice that you are not like
the rest of them cos sometimes I have to take my mum to doctors appointments and I have
to miss out on school so it looks like I have the problem. But I don’t’ (Julie).
These ideas further reflect the social construct of the negative association of caring
with emphasis on schools as a source of misconception. This supports findings from the
2003 Young Carers Report which found many teachers were unaware that students were
young carers and regarded absence as a sign of laziness or bad family background.
All the evidence presented so far points towards the idea that young carers do a
difficult job with or without sufficient resources. In such admission, young carers did not
want pity to follow suit, but the need to draw attention to what they do. This was
considered as the route to overcome ignorance, feelings of being undervalued, and of
misunderstanding.
(xii) Paradoxes of caring and social injustice‘It’s like I don’t exist and what I do doesn’t exist’ (Tina).
Following on from societal misconceptions, comes two of the most poignant
findings from the research. When asked the question of what life would be like once they
stopped caring the young carers response was, ‘better, I think, maybe, umm, because I
will be able to do the stuff that other people do. Such as …um.. such as… concentrating
on my education so I can do well in life. And I can finally do the stuff that everyone else
does…but that also means I won’t have a parent’ (David).
12
Tina went onto say that ‘when you say what it’s like to stop caring, I will have a
life, but that means that I won’t have a mum’ (Tina).
This provides reasons as to why the young carers felt guilty for being ‘selfish’
since they realised that the time spent caring was the time spent with their parent alive.
As a result, the sacrifices that young carers made were justifiable due to the short life
span of some of the care recipients or the uncertainty in their health. Young carers learnt
what latent gratification was as they felt they could resume their life after the caring role
has ceased, not before. The adultness of such a response meant that not only had young
carers learnt the use of, but they also are more exposed to the ideas of death and loss of
parent at a much younger age in comparison to their peers.
Another paradox of caring is that young carers are young people carrying out
adult jobs, without the help received as adults. In regards to the problems of caring,
David said, ‘I mean I have had it from both angles. The biggest problem is that I can’t get
help unless my mum ok’s it sort of thing, but my mum doesn’t understand it and then that
means I can’t get help. They still think I am a child, but they let me do adult things, but
they don’t give me the help that adults get. I know what they mean so I can see it from
both sides, but I need the help.’
It is not only a perception that young carers faced from social services but also
from schools themselves;
‘When I go to my brother’s parents evening, the other teachers think it is weird that I go
cos I am young and that’s it to them but I am really older inside’ (Tina).
(x) Learning life skills, time management and understanding disability–
‘You get quite mature for your age’ (David).
Up until this point, care giving has been described as a situation which undoubtedly
has negative effects on the young carer. However, the young carers thought that there
were some positive aspects to caring which were intrinsic to the role itself. For example,
the young carers were aware that gaining access to adult knowledge and experience at an
earlier age, in comparison to their peers would be beneficial to their future. Julie said;
‘I mean you get to be more patient and stuff like that. Things that you
would do when you get older, but all I am doing is doing that now. You
also get to be more understanding, and you learn about disability. Well
you learn how to deal with people and their disability.’
Tina reinforced this by saying that, ‘I have learnt how to fill in forms and look after
myself and look after a young family. I guess I am doing the things that most people
would do much later (Tina). Other areas of life skills include, knowing ‘different names
of drugs and how to like go shopping and stuff’ (Tom).
Such steep learning curves were considered positive aspects of the caring role
itself. Indeed, by stating such acknowledgement, the young carers felt that they were
reinforcing their status as capable carers. To dwell on the difficult aspects of caring, was
considered as a sign of ‘moaning’. Tina said;
‘I don’t want to sound like I am moaning. You know I can cope with things, so don’t get
me wrong or anything, yeah. It’s not all that bad. Ok yeah, yeah I have given up a lot and
I have sacrificed stuff for myself, but I wouldn’t do it if I didn’t want to. They are my
family and I want to be there for them’ (Tina).
The complexity of the caring situation for the young people is summed up by
Julie;
13
‘ caring is hard…but manageable and you can still do your own thing, you just have to
plan everything ahead’ (Julie).
The mixture of experience of caring as a drain and learning opportunity supports
Shulz and Quitter’s (1998) research, which found that the caring role was ‘functional to a
young person’s development’ whilst also surpassing ‘the boundaries of what is
normative’. The research supports Early et al’s (2006) findings that the young carer
values the role of caring, whilst considering it as a burden on the other. To ignore this
would mean that, ‘you are ignoring the hard work that I’ve done for my mum all by
myself, you know (David).’
Essentially, the young carers had no choice in gaining access to adult knowledge
and experience, regardless if it was considered as a positive externality. This
demonstrates the complexity in the experience of caring, yet, the fact remains that the
negative experiences far outweigh the positive. As a result, the young carers felt there
were many ways in which their lives could be improved, summed up in the following
section:
Changing the future of young carers
There were many things that carers felt needed changing, but many had not thought of
this before hand, nor did they think that people cared.
Micro View: Needing help with the ‘random stuff’ (Julie).
The young carers did not want the caring role to be replaced in its entirety, but
instead required specific assistance. Tina said, ‘It’s just about getting the balance right.’
Part of that balance was meeting the demand for help without ‘butting into your life’.
This was specific to providing help with tasks that they considered society to regard as
‘stupid’ and ‘random’. Yet, these ‘stupid things’ were vital to maintaining the caring role
itself, and suggest the simplicity in the task of alleviating the burden of the caring role.
The gap in the services supporting young carers with aiding the ‘random’ and ‘stupid’
tasks, and the young carers assumption that such tasks were insignificant suggest two
things; that formal services provide inadequate assistance, originated from the lack of
attention to young carers. Secondly, young carers may be reluctant to disclose the full
extent to which assistance is required due to feelings of embarrassment or that their
request is unworthy. Thus, in using the research as a platform for young carers, there is
evidence to suggest that there is a misunderstanding of exactly what young carers require.
They face the problem that, ‘I can’t be there all the time for her but no one else is either.
There is nothing for her to be helped. I mean they all just forget about you’ (Julie).
The purpose of this research is to delve into the reality of young carers, and
formulate recommendations of improving their lives based on this reality. The following
section demonstrates exactly what the young carers required.
(i)
Home team to clean the toilet once a week or clean the fridge.
‘Sometimes I don’t have the time or energy to clean the bath or the toilet and having
a home team to do all the small stuff is what is needed. I know it’s really stupid, but
its with the stupid things that if I got help with, would make caring a lot easier. Just
helping with those kind of duties would be so much off of my shoulders and it would
mean that no one is butting into my personal life but they are helping so much’
(David).
14
The home team deals with relieving the physical drain of performing domestic tasks
which take up a lot of the young carer’s time whilst allowing the young carers to
participate in activities often neglected, such as leisure and homework. The importance of
this is demonstrated in David’s demand for a clean house so that his ‘friends could come
round.’ In addressing these needs, the young carers are able to perform their roles as
young people.
(ii) The need for ‘enough money for household necessities’, such as toilet paper or to
call home from school to check on the health of parents. This means essentially tackling
the financial status of young carers, both in the short and long term, with emphasis on
maintaining basic levels of hygiene and minimum standards of living. Both requests are
small in terms of its cost and ease of administration. This is important to note particularly
if one considers that by tackling the financial status of young carers financially, one is
essentially tackling one aspect of child poverty and social exclusion.
(ii) Help with filling in forms; ‘When I do apply for help, the forms are so long and hard
to fill, I wish there was someone who would be able to help me with that. It’s so
complicated, there is no one there to explain that to you. It’s not straight forward’
(David).
The young carers required the benefit services to be made user-friendly, specific to their
age and knowledge. This means services need to be aware that a young carer is a child
carrying out parental/ adult tasks. This establishes young carers in their own right in the
realm of informal care.
Macro view:
So far, the young carers have presented the extent to which help and change is
required in order to tackle problems in the short to immediate term- mainly focussing on
the material and financial aspect of caring for young people. In striving to get ‘the
balance right’, the young carers also thought that change was required on a macro level,
which points towards long term structural and attitudinal change among key agencies and
wider societal values.
In regards to key agencies, a great deal of change was required, but as with the
micro view, change could be achieved through small adjustments and efforts or by
services providing an adequate service, as such, pointing towards limitations in the
performance of some organisations;
(i)
Transparency of the benefits systemAs part of improving the financial status, young carers required access to benefits at a
point in their lives where they were unable to produce their own income, which was made
difficult from the complexity in the application. The young carers wanted things to be
made ‘clearer and in simple terms. No one tells you what to do or what you can do. It’s
ridiculous! There’s so much shit to read through! Ooh, don’t get me started!’ (Katy).
As with the recommendation of ‘helping to fill in forms’, formal services need to
be aware that child carers do exist, but they require help in making the transition from a
child’s world into an adults world. Young carers experience the turbulences of carrying
out adult tasks, yet they do not experience the benefits- in every sense of the word.
15
(ii)
Efficient referral servicesYoung carers want ‘more agencies that can put you to the right direction. I had to ask
people at the bus stop about getting help transport for disabled people and getting
disabled bus passes. It’s like you don’t exist. There is not enough communication between
people’ (David).
This recommendation targets the structural working of formal services that are
involved with both young people and carers, pointing towards their failure of helping
young carers. It too highlights the young carers’ lack of exposure to important
knowledge, again adding to the young carers feeling of being unable to ask for help even
with available services.
(iii) Improving the role of the social servicesThis is most evident in Tom’s response, ‘social services, I don’t know who they are, what
they do, cos no one comes to visit us.’ The lack of interaction between young carers and
social services were not the only problem. Katy said she needed, ‘someone who just deals
with young carers cos I only got the social workers and they are weird and just can’t help
properly’.
The social workers were considered inadequate and dysfunctional in
meeting the needs of young carers;
‘I think the most important thing is with the social services, I mean I have had
them involved before and if you call them, they don’t follow anything up. They leave it up
to you to call them. But what if you are not particularly able to or have school so you
can’t call them during office hours. I think there should be a new system like a follow up
system’ (David).
Indeed, the social services were viewed in a rather negative light as demonstrated
in the fear that, ‘it’s not like you want to ask them for help cos they might take you away
from your mum’ (Julie). Such ideas remain consistent with Early et al’s (2006) study
which found that child carers were weary of exposure to social services as intervention
may do more harm than good (Early et al 2006: 178-179). Thus, the changes that the
young carers required in the social services were not large. A re-education is required in
order for young carers to understand the exact involvement of the social services in
young carers’ lives. In addition, the social services were thought to require upheaval and
a re-education in performing their role to its full potential, specific to the young carers’
needs.
(iv)
Increasing the availability of young carers’ projectsThis tackles the extent to which funding is available to provide key support for
organisations that cater their services towards young carers. These projects are essential
to young carers because they ‘just want a place to just let out my feelings’ (Tom). Indeed
its positive effects were evident in Julie’s response, ‘I mean I am really lucky, cos I am
part of this carers youth centre in my area, so I go to that pretty much every day. That
keeps me busy, and I stay around other carers, so that is nice. These projects exist, but
access is based on postcode lottery and in some cases, the lack of awareness between the
young carer and referral agencies.
(v) Increasing awareness of and re educating; what caring is and who young
carers are to both the youth and formal agencies. Tom said, ‘I don’t think people know
enough about young people like, me and they don’t care.’
16
So far, the research has confirmed many aspects of caring found in previous
research whilst also uncovering different angles on the subject. Undoubtedly, caring is
difficult for young people, and the points (i)- (x) highlight these. The research has been
able to point direction as to changes, on a micro and macro level, that are required, yet
there was one resounding recommendation. The position of Young Carers could be
‘improved just by letting people know about it. That’s what I mean about making it more
known like I said before. I mean they don’t get enough help, cos people don’t know what
help that they need. I just need someone to help pick her up, but now that I am older, I
don’t need that kind of help like I would have before, but then now that I am older, I have
less time to do stuff like that cos I am at school’ (Julie).
In increasing the awareness of what young carers do, services can be provided
which adequately address their needs. As Julie suggested in the quote, her role changed
over time, which meant that continual re-education of workers and agencies is required so
that they remain up to date with the fluctuating nature of caring.
Indeed, a greater awareness of the true picture of young carers would overcome
social misconception and thereby make it easier for young carers to confide in people
when they needed help, not when others provided it;
If people knew more about it, then they wouldn’t feel pity of you with those eyes
and that tone of voice. If it was more there in the open, then people would be like ‘oh
yeah, well you know what, you can do this, you can do that. Cos then I wouldn’t have to
do everything for myself without people thinking that my family are useless and disabled
(Tina).
Discussion
Through the interviews of five young carers, the research aimed to gain a deeper
understanding of the experience of young carers, and eventually their opinions on
appropriate action to aid their plight and recognition. As such, the statements pertaining
to the five young carers are in no way representative of the experience of all young
carers, nor does it reflect the work of all young people’s agencies within the formal
economy. Yet, the study sets precedence in its unique approach from one young person to
another, and in its findings from those who were once statistically hidden. This enabled
access to alternative results compared to previous literature and thus achieving analysis
closer to the actual reality of young carers. From this, the research gave young carers a
platform to voice their concerns away from what they considered as judgemental or
feared bodies, adding to the validity of their arguments. Subsequently, the research was
able to identify the needs of a proportion of young carers which had remained hidden for
so long.
In doing so, the young carers offered a combination of life experiences of caring,
from transitional advantages into adulthood, to experiencing hardship and emotional
adjustment of performing adult roles outside their expected age group, similar to studies
such as Becker et al (1998) Early et al (2006) and Frank and Tatum (1999). The findings
also found the disadvantages of caring to outweigh the positive, in terms of the physical
time and dedication given to caring, often at the neglect of their own social development
and future aspirations, again similar to research by Aldridge and Becker (1993). Within
this, concern centred on the appropriateness of the exposure to the positive life skills
17
acquired at such an early age and for the duration of the role in which many had cared for
most of their life. In addition, the young carers were faced with little or no support from
formal services, leaving young carers feeling isolated and lonely. This latter disadvantage
was considered integral to preventing young carers from fulfilling their role as either
carers or young people and eventual stresses and strains. Such feelings were common
amongst all young carers regardless of the duration of their role.
Young carers had few rights as carers and even less so as young carers, yet were
burdened with will all the responsibilities of adult carers. The interviews demonstrated
that young carers went through the same turbulences of adulthood as a carer, yet they did
not experience the benefits- in all sense of the word. Thus, they were doubly
disadvantaged (a young person with no rights as an adult), with double the responsibility
(as a carer and a parent to their parent), with triple the problems (as a young person, as a
young carer and concern of the parent’s fluctuating health).
Yet, to concentrate on the difficulties of caring is not to undermine the role of the
parent as a totally passive entity, or to pass judgement on their parenting role, but to point
awareness directly on the parenting aspect of caring for young carers which was
considered as one source of stress. Perhaps the title ‘young carers’ is insufficient when
labelling the role in which young people carry out such adult tasks as it neither places
them within the realm of childhood risk groups, nor does it place them within the
structure of adult care- giving. Young carers experience the difficulties and
responsibilities similar to, if not more so than adult carers, yet they do not receive the
help offered to adult carers or the recognition, limited may it be. Tina said, ‘I mean when
I call the social for help, no one talks to you as they think you are just a child…who do I
ask for help?’
Thus, in evaluating and supplying assistance to young carers, they require help
twofold- in assistance with the adult nature of caring and secondly with supporting with
the parental nature of caring. Such a distinction needs to be made for the following
reasons; the term parenting is specific to explaining the psychological adjustment
required for young carers, transferred from a parent to a child. The adult aspect of caring,
on the other hand, refers to the extent to which young carers need help with adjusting to
tasks beyond their age. The distinction is evident in the reluctance and lack of awareness
of respondents to categorise themselves as young carers. As Tom said, ‘I never think of
myself as a young carer. I don’t know what that is. I am just a kid doing adult things. It
really should be the other way round, I should be getting looked after. It’s hard to
explain, because there’s other things for me to do, not only playing, but exams, and
school work that I need to do. Things that I do at home gets in the way of my childhood.
That’s it’ (Tom).
In this instance, the general lacking awareness of young carers can be partially
explained by the way young carers are conceptualised, and thus hidden from society.
Being a carer is considered an adult duty within a family setting, and thus decision
makers are reluctant to define young people as young carers, and young carers are
unlikely to consider themselves as a young carer- rather ‘helping mum and dad out’.
However, their age appeared not to be a factor in the capability of performing
their role, since many were able to juggle caring and school life without adult assistance.
Yet it begs the question as to why so many young carers remain isolated in such a
demanding role, and why, once their existence has been acknowledged by formal
agencies, sufficient help is not offered.
18
Such insightful findings are able to substantiate arguments supporting both the
medical and social model of disability, in which the role of caring is debilitating along
with limitations in the structural support. It is with the latter model, however, which the
respondents found to be the key to achieving positive change. In reality, young carers
have no choice other than to undertake caring responsibilities, and the increased number
of parents experiencing disability and chronic illness will only make it inevitable that the
western world will see an ‘army of young carers’ with an even greater burden (Casciani
2003).
Subsequently, suitable intervention is required to enable young carers to
participate fully in society as carers and as young people. Yet to offer more help is
insufficient. Through insightful and compelling arguments made by the respondents, it
was found that young carers require tailored assistance in response to the practical
considerations of the fluctuating health of their parent. The ‘stupid’ and ‘random’ tasks
that young carers were required to accommodate as part of caring in their daily lives as
young people. Indeed, the success of young carers projects derives from the fact that they
cater for young carers as they know what they require and how much support they need,
in contrast to educational and social services, which in this study were found to be
inadequate. The simplicity in the requests by the young carers demonstrates the simplicity
in the solution of aiding young carers. Such findings support reasons as to why it is
important to listen to the voice of young carers.
Unless young carers are given the deserved recognition and increased attention,
the label ‘young carers’ will not suffice in denoting their predicament and elevating their
standing as recognised carers and young adults. Perhaps, in giving young carers a more
adult label, one is recognising their task as not an extension of childhood duties, but as an
increased development to the realm of adulthood, which includes them in the discussion
of issues that young people are faced with.
Whilst young people become accustomed to coping alone with the drain and
stress experienced as a young care giver, the situation will persist in which young carers
feel undervalued, over worked, insignificant and thus deserve pity, which can only add to
the irony of their position as young carers. Indeed, all young people should have access to
the enjoyments and perhaps the tribulations that come with youth, deprived of as a young
carer. Therefore, greater effort is required from young people’s services to ensure sure
that young carers are helped as carers as well as young people. This is particularly
important in light of controversial findings from UNICEF report (2007), which indicated
the shortcomings of the UK in tackling child poverty and child welfare. Ultimately, in
tackling the plight of young carers, one is tackling social exclusion and child poverty.
Thus, social misconceptions need to be overcome to enable young carers to maintain their
independence and be taken seriously – an aspect this study sought to overcome. Young
carers are indeed young with adult responsibilities, who will continue to require
specialised assistance and greater societal attention through informed research based on
the young carers’ view point. This will enable issues that have remained hidden to be at
the forefront of social policy and intervention. If this can be achieved, sentiments such as
Tom’s ‘I don’t think people know enough about young people like me, and they don’t
care, what’s the point of trying to change carers lives, no one will listen?’ could be
confined to history.
19
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