Case Study: The Young Carer

News article

By: Liza Ramrayka

Date: April 5, 2006

Source: Guardian Online. "Case Study: The Young Carer." April 5, 2006 〈http://society.guardian.co.uk/macmillansupplement/story/0,,1747462,00.html〉 (accessed June 8, 2006).

About the Author: Liza Ramrayka has written two books about fundraising, volunteerism, and working at nonprofit organizations—Working in Fundraising and The Good Trustee Guide. She also writes for the United Kingdom's Guardian and Guardian Online, as well as VSmagazine, the news and informational publication for the United Kingdom's National Council for Voluntary Organizations. Ms. Ramrayka wrote a series of articles for the Guardian about carers (caregivers) in the United Kingdom and the challenges they face.

INTRODUCTION

Young carers are children and youth below the age of eighteen in the United Kingdom who devote significant time to service as volunteer caregivers for a parent, sibling, or other relative in the household. The person being cared for must be significantly hampered in their ability to conduct activities of daily living by chronic physical or mental illness or disability. Much young carer data is based on statistics from survey research involving more than 6,100 young carers. It is quite difficult to quantify the number of youthful care-givers accurately, as families are often unwilling to discuss these roles for fear of intervention by child welfare agencies (out of concern that a young carer may be removed from the home if there are allegations of neglect or parental inability).

Across the United Kingdom, there are slightly more young female caregivers than male (56% v. 44%), and their average age is twelve years. Considerably nearly two-thirds come from single-parent families. Of those in single-parent homes, most provide care for their mother. In two-parent families, the youth most often cares for a sibling. Adults who need care may have a disability or chronic physical health concern, or may have a mental illness or substance abuse-related impairment. Among those responding to that section of the survey (96%), almost none of the parents who needed care were working. This could limit finances to pay for outside caregivers (beyond what would be available through third-party payer or government-sponsored programs without cost), increasing the need for the youthful caregiver's assistance.

Most commonly, the person needing care has a physical health condition or disability; less frequently, a mental illness or a substance abuse/addiction issue is involved. In any case, the caregiving may involve household maintenance—such as cooking, cleaning, grocery shopping, and laundry, among other chores. General and personal care may also be needed, such as administering medication, changing dressings, transfer from bed to wheelchair or other mobility assistance, and help with feeding, washing, dressing, and toileting. It is also common for young carers to help care for younger siblings, and to be a source of emotional support for the person in need of care, as well as other family members. As the frequency with which young people have taken on caregiving roles has become more widely known (particularly so in the more developed nations), support and assistance projects have been created and implemented for them.

PRIMARY SOURCE

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SIGNIFICANCE

Young carers almost never choose their roles—they are simply faced with the need to take on (sometimes unexpected) responsibilities due to family circumstances and, according to the information compiled by Dearden and others, generally do so with little hesitation. The tasks they engage in are defined by the nature of the illness or disability, but can vary with time and changing condition of the person(s) they care for. Young carers can miss school due to the exigencies of their roles, although the most recent UK research indicates that this has lessened by several percentage points since the first survey was completed in the mid-1990s.

Case-specific information presented by Aldridge and Becker suggests that young carers experience anger, frustration, fear, anxiety, isolation from peers and others, and considerable confusion about their roles and responsibilities. They are rarely given useful information by medical professionals about the nature and severity of the illness or medical needs of the person for whom they are responsible, and are often socially isolated from peers because of the nature and extent of their responsibilities—survey data indicates that most carers spend an average of ten to twenty hours per week performing their duties. They are frequently unable—and sometimes unwilling—to take part in social activities with peers. Becker and Aldridge refer to a "caring curfew," which is the time limit—generally brief—that young carers feel comfortable leaving their charges alone and going out to spend time for themselves.

As awareness of both the presence and the needs of young caregivers has grown, so too have the resources with which to support them. In the United Kingdom, the number of projects designed specifically to assist and support young carers has more than quadrupled since 1995—growing from fewer than forty to more than 200 in just over ten years. In addition, the education and training of health care and helping professionals, such as medical social workers, family and primary care practitioners, and nurses, has been updated to include young carers. School personnel such as teachers, social workers, and guidance personnel are also being given tools with which to identify and support them.

Young carers' projects have been implemented in Great Britain, Scotland, Northern Ireland, the United States, Australia, New Zealand, Wales, Malta, Canada, and Zimbabwe, among other countries. Key functions include increasing young carers' visibility and highlighting their needs and concerns. The projects give them a forum in which to voice their needs and concerns, to interact with peers who share their circumstances, to be afforded respite care and opportunities to socialize with other youth, and to garner understandable and realistic information about the disability or illness of the person for whom they give care. Such projects also frequently offer counseling and emotional support services, as well as recreational and community activities. In addition, many create an important referral and communications link between school systems, social welfare and other social service agencies, community networks, medical and other health care practitioners, and service providers who can offer assistance to the young carers and their families.

FURTHER RESOURCES

Books

Aldridge, J., and S. Becker. Children Caring for Parents with Mental Illness: Perspectives of Young Carers, Parents and Professionals. Bristol, United Kingdom: Policy Press, 2003.

――――――. The National Handbook of Young Carers Projects. London: Carers National Association and Young Carers Research Group, 1998.

Becker, S., J. Aldridge, and C. Dearden. Young Carers and their Families. Oxford, United Kingdom: Blackwell Science, 1998.

Dearden, C., and S. Becker. Growing Up Caring: Vulnerability and Transition to Adulthood—Young Carers' Experiences. Leicester, United Kingdom: Youth Work Press, 2000.

――――――. Young Carers in the UK: The 2004 Report. London: Carers UK, 2004.

Frank, J. Couldn't Care More: A Study of Young Carers and their Needs. London: The Children's Society, 1995.

Frank, J., C. Tatum, and S. Tucker. On Small Shoulders: Learning from the Experiences of Former Young Carers. London, United Kingdom: The Children's Society, 1999.

Franklin, Bob, ed. The New Handbook of Children's Rights: Comparative Policy and Practice. London: Routledge, 2001.

National Alliance for Caregiving and United Hospital Fund. Young Caregivers in the U.S.: Report of Findings. Bethesda, MD: National Alliance for Caregiving, 2005.

Web sites

Alzheimer Society, Niagara Region. "Young Carers Initiative Niagara." 〈http://www.alzheimerniagara.ca/YCIN.htm〉 (accessed June 12, 2006).

Department of Family and Community Services. "Young Carers Research Project: Final Report." September 2001 〈http://www.carersaustralia.com.au/documents/young_carersfinal_report.pdf〉 (accessed June 12, 2006).