By Michael Ireland
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Back to new Transitions - Re-Engagement Edition

Setting the Context

Illness and disability can affect anyone at any time regardless of family, social, religious, or political differences (Frank, 2002). Issues of chronic illness and disability (including mental illness, frail age, and drug and alcohol problems) are both prevalent social issues and family issues. These issues therefore, affect all members of the family in different ways and to varying degrees. When members of a family experience chronic health difficulties, it can generate stress for all members of the family system and can result in a number of adverse consequences, particularly for children.

In Australia approximately two million children and young people live with a parent who has either a physical or intellectual disability (Goggin & Newell, 2005), a mental illness (Maybery, Reupert, Patrick, Goodyear, & Crase, 2005), or an alcohol or drug issue (Odyssey Institute of Studies, 2004). However, this data refers exclusively to parents with a health condition and does not include young people who may be siblings to one of the 694 600 young people with a disability or chronic illness (Australian Bureau of Statistics, 2003).

When families experience illness or disability they must adapt and find ways of coping with the stress of having a loved one with a health condition and with the additional responsibilities that are required to maintain family functioning (Jones, 1997; Korneluk & Lee, 1998). In essence, caregiving constitutes the support and assistance family members provide each other as a routine part of family interactions and is a normative and pervasive activity. When members of a family experience health difficulties, caregiving often represents an increment in the usual support and care provided and can require substantial amounts of time and energy (Biegel & Schultz, 1999).

Over the previous two decades, research has investigated the lives and experiences of children and young people who adopt caregiving responsibilities. This research has identified a number of both positive and negative outcomes for young people with adverse effects on education being the most frequently cited (Carers Australia, 2002a). However, young carers in Queensland are currently not explicitly targeted in formal student support services.

Young Carers and their Roles

Research demonstrates that when family members live with a chronic illness or disability they often rely on children for immediate, flexible, and continuous care and support (Aldridge, Becker, & Dearden, 2002). These young people have been referred to as 'young carers' (Aldridge & Becker, 1993b) Young caregiving can occur across a broad age range and so the age limit in this definition is purposely inclusive. While research has identified young carers as young as pre-school age (Becker, Aldridge, & Dearden, 1998; Gates & Lackey, 1998; Lackey & Gates, 1997), the average age of young carers is approximately 12 or 13 years (Carers Australia, 2002b).

In Australia the number of children and young people adopting these roles has been documented at approximately 347 700 (Access Economics, 2005; Australian Bureau of Statistics, 2003). This figure, however, is a significant underestimate due to the invisible nature of young caregiving. Fundamentally, young carers seldom recognise or identify with the label 'Young Carer' (Stables & Smith, 1999). All the literature available on young carers refers to the fact that they are very much an unseen group within society (Banks et al., 2002; Carers Australia, 2002a, 2002b; Pakenham, Bursnall, Chiu, Cannon, & Okachi, 2006).

Young Carers and Education

Adverse consequences on education is one of the most frequently cited impacts of caring on young people (Carers Australia, 2002a). Nevertheless, schools are the only formal institution to have regular contact with young people and therefore, possess the greatest capacity to provide non-invasive and ongoing support to students with family caregiving responsibilities (Nankervis, 2005).

Over the past ten years, a number of researchers have looked into the experiences of young carers in education. Both qualitative and quantitative research has been conducted in the UK, USA, and Australia to understand the effects family illness and family caregiving can have on young people's educational engagement and outcomes (Becker, 2007).

In 2002, Dearden and Becker conducted a meta-analysis in the UK of existing research into young carers and education (Dearden & Becker, 2002). They found that while not all young carers reported difficulties in education many did (from approximately a third (Banks et al., 2002; Halpenny & Gilligan, 2004) to 70% (J. Frank, Tatum, & Tucker, 1999).

Specific Problems Identified in Research

Research from Overseas

Research in the UK has found young carers are at risk of a number of negative effects on their education (Aldridge & Becker, 1993a, 1993b). The meta-analysis conducted by Dearden and Becker in 2002 identified the following list of educational difficulties experienced by young carers (these findings were closely replicated by Moore and colleagues (2005) with Australian students).

Additionally, data from qualitative interviews with young carers offers a number of insights into how the daily concerns and domestic pressures (Banks et al., 2001) of young caregiving present as barriers to optimal educational engagement and outcomes. At the outset, children have reported that constant worry and anxiety for the ill or disabled relative is an ongoing barrier to optimal concentration (Dearden & Becker, 1995). Additionally, in a UK national survey, the majority of young carers that had missed school identified a number of factors directly related to their caregiving roles (e.g., a reluctance leaving ill parents alone) (Dearden & Becker, 2000a). In some more extreme cases, young carers' absence is related to the safety of care-recipients (as in the case of self-harming or suicidal relatives and/or those with mental illness or a drug and alcohol problem) (Aldridge & Becker, 2003). Furthermore, when young carers do attend school many report feeling stigmatised and isolated (Underdown, 2002).

Research from the US also found that alongside family life and time with friends, school was the most likely area to be affected by family caregiving responsibilities (Lackey & Gates, 2001). Research identified a pronounced effect on young carers' school life and found a number of young people dropped out of school as a result of caregiving responsibilities (Lackey & Gates, 2001). Siskowski (2006) found that 67% of young carers in a student sample missed school and after-school activities, had difficulty completing homework and were interrupted in their studying. This research also found that support for young carers in school and the community can improve education outcomes.

Research from Australia

In 2002, Carers Australia commissioned a report to draw together all the available research on young carers. This project discovered that young caregiving was widespread in Australia and that the impacts of providing care without support were often significant and long lasting (Moore et al., 2005).

Data from the Australian Bureau of Statistics demonstrates that only 4% of young primary carers aged 15-25yrs are still at school (compared to 23% of the general population in this age group) (Australian Bureau of Statistics, 1999). These figures are significant and clearly demonstrate the importance of schools responding appropriately to the legitimate and pressing needs of young carers. In addition, educational research in Australia demonstrates that family problems including children's caring are the major reasons for poor school attendance in Australian schools (Marsh, 2000; Moore et al., 2005).

It is not surprising then, that Australian young carers have identified support in schools as one of their key areas of need (Kroehn & Wheldrake, 2006).

Young Carers Value Their Education

Poor retention rates for students with family caregiving responsibilities are not an indicator that they do not value school or their education. In fact, young carers often highly regard their education and work hard to achieve. Thomas and colleagues noted,

We were struck by the conscientiousness attitude to school and homework taken by many of the young people interviewed .There was a high level of awareness of the importance of doing well at school. Truancy was not an issue; they wanted to go to school, and seemed genuinely concerned when they had to be absent or were unable do their work (Thomas et al., 2003 p. 40).

Young carers have reported that school is particularly important for them because it,

1. Offers respite from their home lives (providing a safe haven and stability);
2. Provides them with opportunities to connect with other young people (particularly those in a similar situation to themselves) and to develop a sense of belonging (this is particularly important as social support has been found to be the strongest predictor of psychosocial functioning in young carers (Pakenham, Chiu, Bursnall, & Cannon, 2007));
3. Is a place where they can receive support and information from people who are understanding and caring;
4. Provides opportunities to learn and to experience new things (adapted from Moore et al., 2005); and
5. Is a pathway to future work opportunities as well as positive psychosocial development (Nankervis, 2005).

Why Retention is Poor¹

Because school communities are not aware of or understand and value young people's caring roles, young people report experiencing ridicule, disbelief, inflexibility and labelling by school staff and peers. When young carers experience chronic misunderstanding and a lack of support they are most at risk of discontinuing their studies (Nankervis, 2005).

The decision to leave school for many young carers is a result of factors out of their control and often is the only option they perceive (Carers Australia, 2002b). Young carers assert that when they experience problems with attendance it is because of,

1. The level of caring responsibility they assumed,
2. The lack of formal and informal services available to support them and their relative,
3. Family issues such as poverty and isolation (adapted from Moore et al., 2005), and
4. Education systems that lack understanding and flexibility (Kroehn & Wheldrake, 2006).

Interestingly, research has found that even when young carers have disengaged from formal education some may wish to return (Thomas et al., 2003).

Providing Solutions

Poor educational outcomes experienced by students with family caregiving responsibilities represent an inequality in opportunities for these young people and a form of social injustice, which needs to be questioned and challenged by the learning community.

Overcoming this inequality will require an identification and reduction of the many barriers to learning that are experienced by young carers. One way to do this is for all school staff and students to understand and value diversity and families that experience illness or disability and family caregiving.

Education Queensland's current emphasis on inclusive education and student support provides an ideal framework through which young carers could be recognised and supported without drawing unnecessary attention to individual caregiving or family situations.

A number of initiatives that have been introduced in schools (mostly in the UK) like homework clubs, homework telephone links, and mentoring systems (Banks et al., 2002) would greatly benefit young carers in Australia. In addition, mainstream student support policies and services implemented to support young people and maximise retention (such as flexible delivery, fee exemption, counselling, tutoring, etc.) would afford young carers much-needed support and therefore, maximise educational engagement and outcomes.

Importantly, however, research indicates that young carers generally do not engage with services that are not explicitly targeted at them² (Nankervis, 2005). Thus, optimal support for young carers involves both the extension and specific targeting of existing student support services and the introduction of tailored services.

Understanding and support for young carers in education must be based on the messages and voices of young people themselves. To this end, young carers have consistently and clearly communicated the need for, "improved communication; a desire to be listened to, believed and understood; and to be recognised and valued." (Butler & Astbury, 2005 p. 298) Many young carers report that not being taken seriously enough is one of the major barriers to accessing the kinds of support they require (Roche & Tucker, 2003).

Fundamental to meeting these needs is greater awareness and appreciation for family illness, disability, and caregiving among members of the school community (including teachers, guidance officers and counselling staff, administration staff, and the student population) (Underdown, 2002). Without this, young carers report an ongoing lack of understanding from the school community regarding their needs and circumstances (Halpenny & Gilligan, 2004) and consequently experience stigma and isolation (young carers have even been labelled 'problem-children'). As one young carer put it,

School would have been made easier if the teachers were made aware of my personal plight and they had more of an understanding of why I was tired or why I was aggressive (Bursnall, Pakenham, Cannon, & Murphy, Forthcoming).

Unfortunately, many young carers think, 'Teachers don't know about young carers.' 'Teachers don't care.' (Butler & Astbury, 2005 p. 298) The majority of young carers in recent research reported negative outcomes from self-identifying to teachers, including the loss of anonymity, receiving inappropriate responses, disbelief and breaches of confidentiality (Moore et al., 2005).

Fundamentally, awareness and understanding are critical elements for supporting young people who are carers. Many researchers and practitioners believe,

Until a way is found of enabling young people to feel comfortable about discussing their caring role, services provided to support young carers will only touch the tip of the iceberg. (Banks et al., 2002 p. 230)

Therefore, support for young carers must be built on strategies to increase the awareness and understanding of the whole school community.

Approaches to Supporting Young Carers

A report by the Youth Coalition of the ACT (taken from Moore, 2005) identified the following broad approaches to supporting young carers:

• Training of teachers, counsellors, and youth support workers in school and the broader community so that young carers were provided with the understanding support and appropriate responses, thus enabling them to attend and achieve in their schooling.
• More flexible and responsive education that recognised the difficulties that young carers face when trying to attend and achieve in school (Kroehn & Wheldrake, 2006).

The Nature of Support Services

To ensure the utility and efficacy of support services, these services must be,

• Flexible: to respond to the considerable variance both within (across time) and between caregiving situations.
• Non-invasive: it needs to be appreciated that some young carers will value their privacy and not want to be identified or supported. Ultimately schools need to protect the privacy of young carers and avoid being intrusive in providing support (schools must leave it to young people to initiate support and respect their right not to).
• Confidential: disability, illness, and caregiving are sensitive issues and the privacy and dignity of the family and young person must be protected. The right not to have people know about their situation must also be protected. Trust is critical to identifying and supporting young carers.
• Easily accessible: young people often face many barriers to accessing support services due to time, money, or transport issues. Support services need to be sensitive to these issues and have strategies in place for overcoming them.
• Inclusive: services need to have flexibility and openness in how they define their target group (young carers are not a homogeneous group). Services must also be inclusive of the views of young people themselves and involve them in the development, implementation and assessment of any support.
• Adequately promoted: many families do not access support because they do not know it exists. Support options must be advertised to young people in (multiple and child-friendly) ways that is understandable and non-threatening to them. Information needs to provide positive images of disability and family caring and be appealing, simple, readable, and easily seen (on school noticeboards, newsletters, etc.)
• Holistic: an approach which works towards recognising and supporting both the care giver and the ill or disabled person, recognising family strengths as well as any difficulties and being careful not to undermine parenting skills.

Barriers To Implementation and Strategies

While the provision of support services has been found to dramatically improve outcomes for young carers, there are a number of barriers that restrict access and optimal engagement (Carers Australia, 2002b).

Identification

In order for formal support services to make an impact on young carers and their educational outcomes, school communities need to be able to identify and connect with young carers. Identification presents a critical and unique challenge to supporting young carers. Nevertheless, school is the best place to identify young people with caregiving responsibilities (Kroehn & Wheldrake, 2006).

Critically, Moore and colleagues (Moore et al., 2005) found,

Young carers in this project felt that until schools could counter the negative consequences such as bullying and peer rejection and provide them with useful and concrete supports, they would not feel comfortable in people knowing about their home lives. (p. 58)

As Banks and colleagues (2002) point out, "the reluctance of young people to be identified is deeply entrenched, and that any form of support that singles them out may be of limited value" (p. 243). Young carers might not know who to confide in or even feel able to. Young carers might be embarrassed about their home situation or they may not want to appear different and increase the risk of social isolation and bullying (Frank, 2002).

Students with caring responsibilities do not refer to themselves as young carers nor do their families view them that way (Morrow, 2005; Nankervis, 2005). Some young carers do not recognise the effect their responsibilities have on their educational or psychosocial outcomes. One strategy might be to discard the title 'young carer' and instead refer to these youngsters as 'students with family caregiving responsibilities". Ultimately, it is critical that "identification of students should only occur after schools have developed a series of strategies and policies to address their needs." (p. 59)

One solution to the problem of identification is to look beyond traditional centre-based approaches. One way of doing this is to utilise advances in information and communication technologies to provide a series of non-invasive and flexible web-based (and telephone/mobile) information/resources and counselling services.

Information for young carers needs to include the effects and needs of young carers, the services and support that are available, and information on illness and disability conditions and treatments. Additionally, this information needs to be tailored for different age and developmental stages.

Another possible solution is to include information and questions on school admission forms that allow families to identify that a member has a long-term illness or disability (including mental illness, drug and alcohol problem or frail age). If this strategy is adopted procedures must be in place for communicating and enforcing the confidentiality of the family.

Access

Many young carers will not be aware of the services that are available to them (or in many cases know that they are young carers).

Services need to be advertised in a way that will attract the attention of young people and indicates what kind of help can be provided. Information needs to be presented in ways that young people will notice, see and read. This information must be simple and specific on what a young carer is and the exact services that can be provided and exactly how and where to access them.

References

Access Economics. (2005). The Economic Value of Informal Care: Carers Australia.

Aldridge, J., & Becker, D. (2003). Children Caring for Parents with Mental Illness: Perspectives of Young Carers, Parents and Professionals. Bristol: Policy Press.

Aldridge, J., & Becker, S. (1993a). Punishing children for caring: the hidden cost of young carers. Children and Society, 7, 376-387.

Aldridge, J., & Becker, S. (1993b). Children Who Care: Inside the World of Young Carers. Retrieved 1/2/2007.

Aldridge, J., Becker, S., & Dearden, C. (2002). Children Caring for Parents with Severe and Enduring Mental illness. Evidence, 5, 1-4.

Australian Bureau of Statistics. (1999). Disability, Ageing and Carers: Summary of Findings. Canberra: Commonwealth of Australia.

Australian Bureau of Statistics. (2003). Disability, Ageing and Carers: A Summary of Findings. Canberra: Commonwealth of Australia.

Banks, P., Coogan, N., Deeley, S., Hill, M., Roche, J., & Tisdall, K. (2001). Seeing the invisibility: Children and young people affected by disability. Disability and Society, 16(6), 797-814.

Banks, P., Coogan, N., Riddell, S., Deeley, S., Hill, M., & Tisdall, K. (2002). Does the covert nature of caring prohibit the development of effective services for young carers. British Journal of Guidance and Counselling, 30, 229-246.

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.

Becker, S., Aldridge, J., & Dearden, C. (1998). Young Carers and Their Families. Oxford: Blackwell Science.

Biegel, D. E., & Schultz, R. (1999). Caregiving and caregiver interactions in ageing and mental illness. Family Relations, 48(4), 345-354.

Bursnall, S., Pakenham, K. I., Cannon, T., & Murphy, P. (Forthcoming). Understanding the experiences and needs of young people whose parent has an illness or disability. Manuscript submitted for publication.

Butler, A. H., & Astbury, G. (2005). The Caring Child: An Evaluative Case Study of the Cornwall Young Carers Project. Retrieved 28/9/2007, 2007.

Carers Australia. (2002a). Young Carers Research Report: Background Papers. Canberra: Carers Australia.

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Dearden, C., & Becker, S. (1995). Young Carers: The Facts. Sutton: Reed Business Publishing/Community Care.

Dearden, C., & Becker, S. (2000a). Growing Up Caring: Vulnerability and Transition to Adulthood - Young Carers' Experiences. Leicester: Youth Work Press.

Dearden, C., & Becker, S. (2002). Young Carers and Education. London: Carers UK.

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Frank, J., Tatum, C., & Tucker, S. (1999). On Small Shoulders: Learning from the Experiences of Young Carers. London: The Children's Society.

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Goggin, G., & Newell, C. (2005). Disability in Australia: Exposing a Social Apartheid. Sydney: UNSW Press.

Halpenny, A., & Gilligan, R. (2004). Caring before their time? Research and policy perspectives on young carers. Dublin: The National Children's Resource Centre Barnardos.

Jones, S. (1997). Caregiver burden: The experience of parents, children, siblings, and spouses of people with mental illness. Psychiatric Rehabilitation Journal, 20(4), 84.

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Kroehn, A., & Wheldrake, K. (2006). A Current Perspective: What Services and Young People say About Best Practice and Gaps for Young Carers in Australia. Canberra: The Australian National Youth Roundtable.

Lackey, N. R., & Gates, M. F. (1997). Combining the ablayses of three qualitative data sets in studying young caregivers. Journal of Advanced Nursing, 26, 664-671.

Lackey, N. R., & Gates, M. F. (2001). Adults' recollections of their experiences as young caregivers of family members with chronic physical illnesses. Journal of Advanced Nursing, 34(3), 320-328.

Marsh, P. (2000). Truency or abseenteeism? A school governance perspective. Queensland Journal of Educational Research, 1004(16).

Maybery, D., Reupert, A., Patrick, K., Goodyear, M., & Crase, L. (2005). VicHealth Research Report on Children at Risk in Families affected by Parental Mental Illness. Melbourne: Victorian Health Promotion Foundation.

Moore, T. (2005). More than Words: Supporting Young Carers and Their Families. Canberra: Youth Coalition of the ACT.

Moore, T., Morrow, R., McArthur, M., Noble-Carr, D., & Gray, J. (2005). Reading, Writing, and Responsibility: Young Carers and Education. Canberra: Institute of Child Protection: Australian Catholic University.

Morrow, R. (2005). A Profile of Known Young Carers and Identification and Snapshot of the Ones who are Hidden. Perth: Curtin University of Technology.

Nankervis, J. (2005). Time out for Studies and Life: A Practical Guide and Worker Resource for The Young Carers at risk Respite Program. Victoria: Victoria Carer Services Network.

Odyssey Institute of Studies. (2004). The Nobody's Clients Project: Identifying and Addressing the Needs of Children with Substance Dependent Parents. Victoria: Odyssey Institute of Studies.

Pakenham, K., Bursnall, S., Chiu, J., Cannon, T., & Okachi, M. (2006). The psychosocial impact of caregiving on young people who have a parent with an illness or disability: Comparisons between young caregivers and noncaregivers. Rehabilitation Psychology, 51(2), 113-126.

Pakenham, K., 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.

Roche, J., & Tucker, S. (2003). Extending the social exclusion debate: An exploration of the family lives of young carers and young people with ME. Childhood, 10(4), 439-456.

Siskowski, C. (2006). Young caregivers: Effects of family health situations on school performance. The Journal of School Nursing, 22(3), 163-170.

Stables, J., & Smith, F. (1999). 'Caught in the Cinderella trap': Narratives of disabled parents and young carers. In R. Butler & H. Parr (Eds.), Mind and Body Spaces: Geographies of Illness, Impairment and Disability (pp. 257-268). London: Routledge.

Thomas, N., Stainton, T., Jackson, S., Chueng, W., 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(35-46).

Underdown, A. (2002). 'I'm growing up too fast': Messages from young carers. Children and Society, 16, 57-60.

About the Author

Michael Ireland is presently a post-graduate researcher with the University of Queensland. Michael has spent the past few years working with the Queensland Council of Carers, specifically supporting young carers through research, policy, and service development.

Footnotes

1 Another issue affecting retention is the stringent conditions on accessing Centrelink's Carers Payment. Carers have to be involved in less than 20 hours of study or work. Therefore, for young carers to access much needed financial support many are forced to consider sacrificing their education.

2 The issue of targeting is further complicated in that young carers do not identify with the label young carer. Services should instead be target more broadly at students who live in and help support family members that experience illness and disability. The extent to which services are flexible in how they target and support young carers will, to a large extent, determine their success.

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