‘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
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 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 classYoung 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
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).
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.