Caring Before Their Time? Research and Policy Perspectives on Young Carers

Halpenny, A.M., & Gilligan, R. (2004). Caring Before Their Time? Research and Policy Perspectives on Young Carers.
Caring for family members is both valued and expected in Irish society.Yet, on the other hand, much informal caring goes unnoticed and is, to some extent, invisible in the development of policy in Ireland. A recent report by Comhairle (2002) highlights the strong tradition of informal care provision in Ireland and indicates that policy changes aimed at ensuring the supply of care services in the future have continued to rely on the model of informal (home-based) care provision (Comhairle, 2002). In this context, informal care refers to personal care and support delivered in person by family members from the household, by family members beyond the household and by friends. While most of these individuals will be adults, a certain proportion will be children and young people under 18 years of age. However, as in the Comhairle report cited, the specific needs of children and young people who take on a caring role in the context of family illness or disability in Irish society are not identified. In a recent Dáil debate, the Minister of State at the Department of Health and Children, Ivor Callely, pointed out that considerable progress has been made in recent years in improving the situation of informal family carers (Dáil Éireann, 2003). In particular, the Department of Health and Children had made available additional financial allocations to the health boards and the Eastern Regional Health Authority for the purpose of supplying specific help to such carers by way of provision of a respite grant and/or assistance in the home – nurse, care attendants or home help. According to the Minister, €1.27 million was allocated in 1999, a further €1.27 million in 2000, €2.54 million in 2001 and €1.03 million in 2002, totalling over €6 million allocated in the period 1999-2002. The Department also provides separate financial assistance to the Carers Association by way of core funding which, in 2003, amounted to approximately €710,000. A proportion of this provides support to carers, including training programmes. In one of the few explicit references to the existence and needs of young carers in an Irish context, Multiple Sclerosis Ireland describe young carers as children and young people who are aged between 5 and 18 years old and who help to look after a parent or other family member who is ill or who has a disability ( The Budget Campaign forum hosted by the Disability Federation of Ireland (DFI) in July 2003 highlighted the problem of young carers and clearly indicated the need for action at national level to address this problem. In their pre-budget submission 2004, DFI argued that the lack of adequate funding from support services in the community gives rise to the necessity for children to act as either full-time or part-time carers. The organisation has also identified the need for additional funding for community-based services, so that people with disabilities no longer have to be dependent upon their children for basic everyday care. The present review is a collaborative project between Barnardos and the Children’s Research Centre, Trinity College, Dublin. It has emerged in response to growing awareness, both nationally and internationally, of the need to gain insight into the experiences and needs of children and young people who provide primary or secondary care to parents or other close relatives with a chronic illness or physical disability. Up until the early 1990s, the issue of young carers was largely ignored by researchers, policy makers and practitioners. Aldridge & Becker (1993a) noted the extensive literature discussing the needs and lives of informal carers in the community. The burden and consequences of the tasks of informal carers had been acknowledged and well documented in the literature. However, this was not the case for young carers, whose very existence had remained unacknowledged until the previous decade. One reason put forward to explain this lack of attention is that children themselves might wish to avoid drawing attention to their situation for fear of being separated from their parent and the family falling apart. To date, most of the available research on the issue has been carried out in the UK and Australia. A primary focus of the present review is the context of sole carer in which children provide care within the home to a parent with chronic illness or physical or mental disability. However, the review will also attempt to provide a focus on contexts which have received less attention such as the experience of children in separated or lone parenting families.