Children and young people who act as carers of family members are often isolated and unsupported. Jenny Frank and Christine Slatcher discuss best practice and useful resources for helping this vulnerable group
Jenny Frank MBE Programme Manager, The Children's Society National Include ProjectChristine Slatcher BSc RGN RHV Development Worker, The Children's Society Hampshire Include Project Winchester
Young carers are children and young people who look after family members with illness, disabilities, mental illness or substance misuse. Many of these young carers help with personal nursing care and administration of medication as well as household tasks and care of younger siblings. Inappropriate levels of caring can impact on a child's own emotional and physical health, educational achievement and life chances. There are many reasons why young carers may remain hidden and unsupported including reluctance among some families to acknowledge children's caring roles or involve agencies because they fear family breakup. It is essential to develop proactive practice that will enable families to feel able to ask for support. Health professionals have a responsibility and are in a key position to identify these vulnerable families and mobilise support services. The key to support is the development of a whole family approach to offering co-ordinated assessments and services to support the person with care needs and their family as well as the young carer. The Whole Family Pathway is an online resource directing practitioners to support for young carers and their families. Young carers say that they would like to be listened to, provided with information, supported at school and referred to young carers' projects. The Children's Society Include Project provides training and resources for professionals who work with young carers and their families. Journal of Family Health Care 2009; 19(3): 86-89
_ Young carers are children and young people who care for a person with a chronic illness or disability. Their role may have a negative impact on their own physical health, emotional wellbeing or future prospects
_ Those they care for have conditions that may include physical illness or disability, mental illness or alcoholism or drug addiction
_ Many young carers remain hidden, unsupported and isolated. They may not want to disclose their situation for fear the family will be broken up, or out of loyalty to the person they care for
_ They often feel worried or afraid because no one has told them enough about the person's condition, e.g. how to administer medication or what to do in an emergency
_ Health professionals, whether working in the hospital or community, with adults or children have a responsibility to identify these vulnerable children and offer timely intervention to prevent them taking on inappropriate levels of care
_ The key to support is the development of a whole family approach to offering co-ordinated assessments and services
_ Children's welfare should be promoted and safeguarded by working towards preventing any child from undertaking inappropriate levels of care and responsibility for any family member
_ Safe, high quality support should be offered to those children who continue to be affected by any caring role within their family
Who are young carers?
"Young carers are children and 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 person receiving care is often a parent but can be a sibling, grandparent or other relative who is disabled, has some chronic illness, mental health problem or other condition connected with a need for care, support or supervision.1" While most children and young people help parents to some degree, some may be taking on caring responsibilities that are inappropriate for a child and that have a negative impact on the child's physical health, emotional well-being and future prospects.
The 2001 census identified 175,000 young carers in the UK. Over 5,000 of these were between the ages of five and seven. Some examples of the tasks children and young people undertake are:
_ Household chores - including washing, cooking and cleaning on behalf of the whole family
_ Personal/nursing care - such as giving medication, changing dressings, assisting with mobility
_ Intimate care - washing, dressing and assisting with toilet requirements
_ Emotional support - monitoring and meeting the emotional needs of the person
_ Child care - helping to care for younger siblings, including escorting to school, in addition to other caring tasks
_ Other - household administration such as paying bills, accompanying the cared-for person to hospital, acting as a translator for a non-speaking sensory-impaired person or someone whose first language is not English2.
Recent evidence has shown that many young carers are responsible for administering medication to parents who have serious mental health problems. This has serious implications for the safety of both the young carer and the parent3.
Not all children in families where a member has a disability or illness are young carers, but it is important to differentiate between a normal level of caring and an inappropriate level, and recognise that there may be differences of view between children and their parents about appropriate levels of care. Young carers say that it is not just the caring but also the worry that affects them.
What are the risks of being an unsupported young carer?
The following are examples of the effects on children and young people of providing care:
_ Injury caused by lifting or dressing someone
_ Becoming ill themselves as there is no one around to take on the caring and give them a break
_ Developing behavioural difficulties due to emotional problems
_ Missing school, or problems with completing homework and getting qualifications
_ Isolation from other children of the same age and from other family members
_ Feeling that they are different from other children and are unable to be part of the group
_ Some young carers experience being bullied
_ Lack of time for play, sport or leisure Activities
_ Problems moving into adulthood, especially with finding work, their own home and establishing relationships.
Many young carers feel that no one else understands their experience. They feel that there is nobody there for them and that the professionals working with the adult do not listen to them. They feel that their caring role is not recognised and that their opinion is not respected. However, for young carers who are well supported there are positive impacts. For example, their caring role can equip them with valuable life skills and give them special relationships within the family.
Identifying young carers
There are many reasons why young carers may remain hidden and unsupported. These include:
_ the structure of the family
_ the nature of the illness or disability
_ its speed of onset
_ whether it is an episodic illness
_ lack of effective services from outside the family, particularly if the person does not meet eligibility criteria or the services are inflexible.
_ reluctance to tell outsiders about the situation for fear of interference or of being disloyal.
Some families may be reluctant to acknowledge children's caring roles or involve agencies in their family situation, as they fear family break-up. In addition many young carers are very loyal to their parents and feel guilty asking for help. They may go to great lengths to conceal the illness, particularly where there is a mental illness, substance dependency, HIV or AIDS, because they fear the stigma associated with it. It is well documented that many refugees and asylum seekers arrive suffering from trauma or experiencing mental distress, illness or disability4. Some of these families can find themselves relying on their children to meet their care needs. A new toolkit, the Refugee Toolkit, has been developed to support such families (see Resources). While it is important to understand the reasons why some young carers and their families are reluctant to divulge their circumstances, it is also important for practitioners to identify such situations and offer sensitive, appropriate help (see Box 1).
The Carers Strategy
The Government's Carers Strategy (2008)5 states that "children should not have to take on inappropriate types and levels of caring, which can affect school attendance, emotional and physical well-being and longer-term life opportunities". It advocates action to ensure better joined-up support for the family, and training for staff in local services on ways of working with the whole family. It also advocates tailored training materials to be used with general practitioners and hospital discharge teams, to build awareness and skills in dealing with young carers.
Whole family assessments and Support
Young carers do not care in isolation but because someone in their family has unmet care needs. It is therefore vital that a whole family, multi-agency approach is taken to support these vulnerable families. Co-ordinated assessments and services should be offered to the child and family. The Whole Family Pathway6 is an online resource signposting practitioners to support for young carers and their families (see Figure 1 and Resources).
The Carers (Equal Opportunities) Act 2004 Practice Guidance7 states that "no care package should rely on the inappropriate caring role of a child". It says that local authorities have a responsibility to ensure that the person needing care has appropriate services and this should include help with parenting tasks. Direct payments can be used for this purpose. The local Adult Services Department can be contacted for assessments, help and advice.
Young carers may have an assessment through the Common Assessment Framework (CAF). If the young person's health or development is impaired or the young person is suffering or may suffer significant harm, they should be identified as a child in need and assessed using the 1989 Children Act using the Framework for Assessment of Children in Need and their Families. Health professionals should contact their local Children's Services Department about these assessments. Local carers' organisations can offer support and advice to families. Contact the local Adult Services Department to find what support is available for adult carers in the local area, or The Princess Royal Trust for Carers (see Resources).
What help do young carers want?To be listened to and given the information they need
Young carers and their families are the experts on their own lives. Young carers say they wish to be listened to, understood, believed and their opinion valued and respected. They also say that would like more information about the illness or condition of the person they are caring for, and advice such as what to do in an emergency. Some examples of how young carers feel about their situation are shown in Box2. Obtaining their views and suggestions (Figure 2) is important in planning and improving services for young carers and their families.
Support from health professionals
Young carers have described the support they would like from health professionals (see Box3).
Health professionals can provide them with balanced, accurate and appropriate information, and also give them the opportunity to talk in confidence about aspects of their lives they may not want other people to know about (Figure 3). They can also help parents to access appropriate information and explain to them how this information may help the child. Many support groups for particular conditions or disabilities produce age-appropriate leaflets or web pages.
Support in school
Young carers have expressed the need for support and understanding at school. Individual plans should recognise the pupil's specific needs as a young carer while recognising the child's need for privacy. Some schools have a named staff member with lead responsibility for young carers and a community noticeboard displaying information on where to get help. Young carers have written top 10 tips for schools. These and more suggestions for schools are available from the Include Project8 (see Resources). The school nurse can provide a vital link between the school, family, GP and other health professionals.
Young carers' projects
Many young carers appreciate having access to a place or group where they can mix with other children and young people who have had similar experiences. Young carers' projects can help to reduce both the sense of isolation experienced by many young carers and their families and the stigma that young carers often feel, especially when caring for a parent with mental health problems, or substance misuse. A list of young carers' projects can be found on The Children's Society Young Carers website (see Resources). Regular local young carers' groups are valuable, as is the annual Young Carers' Festival organised by YMCA Fairthorne Manor and The Children's Society (Figure 4) where there are opportunities to have fun as well as share experiences and get information and ideas for coping.
Key principles in working with young carers and their families
Six key principles for those working with young carers and their families have been identified by
The Children's Society (see Box4).
These principles have been incorporated in a tool, funded by the Department for Children, Schools and Families, to enable policy makers and practitioners to provide structured support and measurable outcomes (see Resources). It is important that all professionals in health, education and social services are aware of such resources and projects so that young carers and their families can receive the sensitive and co-ordinated support that they need.
ResourcesThe Children's Society
The Children's Society is a leading children's charity committed to making childhood better for all children in England. It has a national network of centres and projects delivering specialist services for children who face disadvantage in their daily lives. A key area for the Society is supporting children and young people who care for parents or siblings who suffer from chronic illness or disability. The Society campaigns for change and promotes best practice with central and local Government. It works in partnership with social workers, teachers and health professionals to deliver solutions that consider the needs of the whole family.
The Children's Society's National Include Project
This project offers information, training and support to statutory and voluntary sectors who work with young carers and their families, jointly with The Princess Royal Trust for Carers. Resources include:
_ Young carers, parents and their families. Key principles of practice
_ Information pack for GP surgeries and health centres
_ Schools' noticeboard pack
_ "Listening to young carers", a DVD in which young people talk about the issues they face and the solutions that will help improve their lives
_ A range of downloadable information leaflets
_ Access to The Whole Family Pathway
_ Access to the Refugee Toolkit http://www.refugeetoolkit.org.uk
For more information, see http://www.childrenssociety.org.uk/youngcarer For more information, including on training and support, contact details are: The Children's Society, Include Project, Unit 4, Calford House, Wessex Way, Wessex Business Park SO21 1WP Tel 01962 711511 E-mail firstname.lastname@example.org
The Whole Family PathwayThe Whole Family Pathway has been developed by The Children's Society Young Carers' Initiative as a tool for all adult and children's services, education, health and other agencies who have contact with young carers and their families. Using the pathway should ensure that however a family in need of support (whether a child or a parent) first makes contact with an agency, the same key points are followed. It advocates that agencies use joint assessment procedures and a whole family approach. Following the pathway will help practitioners to understand the assessments and the role of other agencies, enabling them to signpost families for support. The pathway also includes links to information about benefits and grants at: http://www.youngcarer.com/pdfs/Whole%20Family%20Pathway%2010th.pdf (accessed 30 April 2009)
The Princess Royal Trust for Carershttp://www.carers.org Registered charity providing support and information services for carers in the UK. Also has an interactive website for young carers which provides advice and access to support groups, at: www.youngcarers.net
1. Becker S. Young carers. In: Davis M (ed.). The Blackwell Encyclopaedia of Social Work. Oxford: Blackwell Publishing 2000, p.378
2. Dearden C, Becker S. Young Carers in the UK the 2004 Report. London: Carers UK, 2004
3. Aldridge J, Becker S. Children Caring for Parents with Mental Illness. Perspectives of Young Carers, Parents and Professionals. Bristol: Policy Press, 2003
4. British Medical Association. Asylum Seekers: Meeting their Healthcare Needs. London: British Medical Association Board of Science and Education, 2002
5. Department of Health. Carers at the Heart of 21st-century Families and Communities 2008. http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_085345 (accessed 15 January 2009)
6. Leadbitter H. Whole Family Pathway. A Resource for Practitioners. London: The Children's Society, 2008. http://www.childrenssociety.org.uk/youngcarer (accessed 15 January 2009)
7. The Carers (Equal Opportunities) Act 2004 Practice Guidance. www.scie.org.uk/publications/practiceguides/carersguidance/index.asp (accessed 15 January 2009)
8. Frank J, McLarnon J. Young Carers, Parents and their Families: Key Principles of Practice. London: The Children's Society Include Project, 2008