Young Carers

by

Agnes Leu, Saul Becker

• LAST REVIEWED: 27 February 2019
• LAST MODIFIED: 27 February 2019
• DOI: 10.1093/obo/9780199791231-0120

Introduction

Until the 1990s, the roles that children and young people undertake in providing informal family care received virtually no academic or policy recognition. If awareness of these children did exist, they were generally referred to as “young carers,” although different countries have different phrases (for example, “young caregivers” in the United States or “children who are next of kin” in Norway). Despite a number of definitions in use, most have the following in common: young carers are young people under eighteen years old who provide care, assistance, or support to another family member, often on a regular basis. They take on significant or substantial caring tasks and levels of responsibility that would usually be associated with an adult. The person receiving care is often a parent but can be a sibling, grandparent, or another relative with a disability who has some chronic illness, mental health problem, or condition requiring care, support, or supervision. More and more conceptual research work shows the importance of “having a common definition” of (young) carers to facilitate their identification as well as to have a common basis in research. Many definitions emphasize the negative outcomes that caring has on children (for example, restricted social and educational opportunities). The United Kingdom has the most extensive body of research and publications on young carers and is the most advanced country in terms of policy responses and legal provision, with a track record of twenty years of research, fifteen years of specific government legislation, and a national network of hundreds of services. Apart from a few other countries (including Australia, Canada, New Zealand, Norway, Sweden, Switzerland, Germany, Austria, and France), most nations and governments have not engaged in identifying and supporting young carers, even though it is likely that 2 to 4 percent of all children take on caring roles within their families. An older group of carers, aged eighteen to twenty-four, are now being referred to as “young adult carers.” This article discusses both groups. A distinction is made here between carers who are under the age of eighteen (“young carers”) and those who are between the ages of eighteen and twenty-four (“young adult carers”) because both groups are at a different developmental stage in their lives and “career” as carers. One group consists of those legally considered “children”; the other, those legally considered “adults.” Although both groups have experiences and needs that are similar, they have important differences that require separate identification and discussion. Moreover, in terms of governmental policy and services, young carers are generally the responsibility of children’s services, whereas young adult carers are the responsibility of adult services (in the United Kingdom, they are the responsibility of adult health and social care services). This distinction has major implications for the delivery of services and interventions for young carers, young adult carers, and their families.

Early Representations

The rate of publications on young carers became more active in the first half of the 1990s, when a few UK researchers were able to secure funds to conduct small qualitative studies focusing on the experiences and needs of child carers. Aldridge and Becker 1993, the authors’ earliest research on a dozen young carers in Nottingham (UK), is considered to be the “firing gun” for the growing interest in young carers by academics, researchers, and policymakers. Their follow-up study a year later is still one of the very few that focuses specifically on the parents’ perspective of receiving care from a child. Frank 1995 is also a small-scale study published at this time—the first of many published over the next twenty years by the Children’s Society. The Children’s Society went on to champion young carers and to pioneer services for them and their families and has published guidelines and models of best practice. Frank, et al. 1999, the second study from the Children’s Society, is the first to research adults who had been carers in their own childhood, to get a retrospective account of their experiences. This approach has been used by various researchers since then, including by the authors of Lackey and Gates 2001, but the information obtained is subject to limitations imposed by adult memories, recollections, and reworkings of past experiences. Bibby and Becker 2000 provides an anthology of young carers’ own writings and poems, providing a clear sense of the experiences and needs of young carers in their own words and written during the time that they were carers. Thomas, et al. 2003 focuses on the invisibility of young carers and their unmet needs.

• Aldridge, J., and S. Becker. Children Who Care: Inside the World of Young Carers. Loughborough, UK: Loughborough University, Young Carers Research Group, 1993.

  An early and highly influential qualitative study generally acknowledged as being the tipping point for raising awareness of young carers in the United Kingdom and leading to the engagement of government and policymakers. Draws heavily on verbatim accounts and is the first to present a young carers’ “rights” perspective.

• Aldridge, J., and S. Becker. My Child, My Carer: The Parents’ Perspective. Loughborough, UK: Loughborough University, Young Carers Research Group, 1994.

  The follow-up to Aldridge and Becker 1993, this study is one of the very few as of the early 21st century that specifically asks ill and disabled parents about their experiences of receiving care from their children.

• Bibby, A., and S. Becker, eds. Young Carers in Their Own Words. London: Calouste Gulbenkian Foundation, 2000.

  An anthology of short items, poems, and interview transcripts giving a space for young carers to talk about their experiences, needs, and wants in their own words. Very powerful.

• Frank, J. Couldn’t Care More: A Study of Young Carers and Their Needs. London: Children’s Society, 1995.

  The first publication on young carers by Frank and the Children’s Society on young carers. Over the years Frank and the Children’s Society have been responsible for many of the publications about models of best practice.

• Frank, J., C. Tatum, and S. Tucker. On Small Shoulders: Learning from the Experiences of Former Carers. London: Children’s Society, 1999.

  The first publication seeking retrospective accounts of caring experiences during childhood from adults reviewing their past.

• Lackey, N. R., and M. F. Gates. “Adults Recollections of Their Experiences as Young Caregivers of Family Members with Chronic Physical Illness.” Journal of Advanced Nursing 34 (2001): 320–328.

  DOI: 10.1046/j.1365-2648.2001.01761.x

  The results from this descriptive, retrospective study accentuated how important it is for young carers to be informed about the illness and caring tasks and to have adequate support systems, as well as to have some time to “still be a child.”

• Tatum, C., and S. Tucker. “The Concealed Consequences of Caring: An Examination of the Experiences of Young Carers in the Community.” Youth and Policy 61 (1998): 12–27.

  This article offers an overview of the experiences and characteristics of young carers with reference to the findings of a small-scale qualitative study.

• Thomas, N., T. Stainton, S. Jackson, W. Y. Cheung, S. Doubtfire, and A. Webb. “‘Your Friends Don’t Understand’: Invisibility and Unmet Need in the Lives of ‘Young Carers.’” Child and Family Social Work 8.1 (2003): 35–46.

  DOI: 10.1046/j.1365-2206.2003.00266.x

  The research developed an alternative definition of a young carer, which is, from the authors’ view, intended to be a more inclusive definition. Such an adoption has a number of implications, not least of which is widening the scope of service provisions.