SCIE Research briefing 11: The health and well-being of young carers

Published February 2005

Introduction - What is the issue?

A SCIE Research briefing provides up-to-date information on a particular topic. It is a concise document summarising the knowledge base in a particular area and is intended as a 'launch pad’ or signpost to more in-depth investigation or enquiry. It is not a definitive statement of all evidence on a particular issue. The briefing is divided into the different types of knowledge relevant to health and social care research and practice, as defined by the Social Care Institute for Excellence (SCIE). It is intended to help health and social care practitioners and policy-makers in their decision-making and practice.

The topic of this briefing is the health and well-being of young carers. There is no standard definition of the term "young carer". The National Strategy for Carers defines young carers as "persons under the age of 18 who have caring responsibilities for another family member who is either unwell (from either mental or physical illness) or disabled". A more detailed definition is provided by the Blackwell Encyclopaedia of Social Work: "Children or young persons under 18 who provide or intend to provide care, assistance or support to another family member. They carry out, often on a regular basis, significant or substantial caring tasks and assume a level of responsibility which would normally be associated with an adult". The definition and classification of a young carer is recognised as very important because it carries with it certain rights to services, such as an assessment of needs. This briefing considers young carers performing a caring role for parents only, rather than for siblings or other family members. The group of parents considered for this briefing include the physically disabled and chronically ill, and parents with learning disabilities, mental health problems or problems of addiction.

The term and concept of a "young carer" may be considered controversial because of the possible implication of dependence for disabled or ill parents. However, young carers is an accepted term in the policy and research literature, and it is not the function of this briefing to examine the debate surrounding the validity or appropriateness of young carers as a term or concept. This briefing is "child-centred", but may be read in conjunction with the briefings on the issues faced by disabled parents, and what they find helpful, which are "parent-centred". In combination, the briefings hopefully offer a balanced examination of the topic.

The nature of the care provided by young carers can be very broad. It can include household tasks beyond what would normally be expected, including sibling care; general care, such as administering medication or lifting a parent; interpreting / translating and helping a parent to learn English; emotional support; or intimate care, such as toileting and bathing. The amount of time a young carer spends in these tasks can vary depending on the nature of the help or support required by their parent. This may be basic physical or intimate care for a parent with physical disability, or emotional support for a parent with a mental health problem or some form of addiction . Young carers do not therefore form an homogenous group with clearly defined or uniform responsibilities. Also, the amount or type of care does not predict how far the health or well-being of the young carer may be affected. This can depend on other variables such as family structure and support from relatives and other sources. Issues considered by this briefing include physical and mental health, psychological well-being, education and social development.

Key messages

  • Young carers do not form an homogenous group with clearly defined or uniform responsibilities. The amount and type of care they provide can vary greatly, and does not predict how far the health or well-being of each young carer may be affected.
  • Several pieces of legislation and guidance formally recognise young carers and define service provision and the responsibility of agencies with reference to this group.
  • Only small numbers of young carers are currently being identified or assessed for support. The reasons for this include blurred boundaries of responsibility between adults and children’s services; a lack of awareness among many professional groups of young carers’ needs and concerns; and young carers’ own lack of awareness of their entitlements, and their reluctance to seek formal help.
  • The research has found that young carers can experience substantial physical, emotional or social problems, and encounter difficulties in school and elsewhere.
  • Many of the studies examine the experiences of young carers who are in touch with Young Carer Projects; they do not report the views of "hard to reach" young carers who are not in touch with either services or projects, or perhaps do not see themselves as young carers at all. The research therefore principally offers general findings on the experiences of young carers who see themselves as such, and who seek help and support.
  • Social workers and teachers have been recognised as the people potentially most capable of identifying and supporting young carers, but young carers’ report that they consider themselves to be stigmatised by teachers and their peers, and feel that little support is forthcoming from schools.
  • The research consistently reports positive feedback from young carers about young carers’ projects. In this setting many young carers consider their problems and experiences to be valued, understood and recognised. They prefer support that is non-intrusive and provided by individuals and organisations other than statutory services.

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