Abstract
Young carers are children and young people (up to the age of 18 years) whose lives are affected by looking after someone with a disability or a long-term illness. This article explains the problems that young carers have and suggests ways to identify and support young carers in primary care.
The GP curriculum and young carers
Young carers are covered by
Manage primary contact with children and their families Describe the needs of children of parents with substance misuse, mental health problems and those with severe chronic or short-term conditions that affect their capacity to parent their children; some may need referral for multi-agency assessment and support services Ensure that parents or carers, children and young people receive information, advice and support to enable them to access appropriate services when necessary Take an advocacy position for the patient or family when needed Demonstrate an understanding of the importance of multi-agency working (working across professional and agency boundaries) Safeguard children and young people, understanding that the welfare of the child and young person must be the paramount consideration and that often children and young people in special circumstances are ‘invisible’ to the system because they live in the shadow of their parents' problems
Young carers are children and young people under the age of 18 years who provide regular and ongoing care, and/or emotional support, to a family member who is physically or mentally ill, disabled or misuses substances. A young carer becomes vulnerable when the level of caregiving and responsibility to the person in need of care becomes excessive or inappropriate for that child, risking impacting on his or her emotional or physical well-being or educational achievement and life chances (Association of Directors of Adult Social Service/Association of Directors of Children's Services, 2009).
The 2001 census identified 175 000 young carers (Doran et al., 2003). However, a recent BBC poll of secondary school children found that 8% of secondary school children had moderate or high levels of care responsibilities. This translates to a figure of approximately 700 000 young carers across the UK (BBC 2010). The true figure may be even higher as this figure only relates to children of secondary school age. Data collected in 2003 from projects supporting young carers suggested that 71% of young carers were between the ages of 11 and 18 years. The remainder were aged 5–10 years (Dearden and Becker, 2004). This implies that the true figure for the number of young carers in the UK may be nearer 1 million.
Despite gender stereotypes, 44% of young carers are boys (Doran et al., 2003). Half of all young carers spend more than 10 hours/week caring and 18% spend more than 20 hours/week caring (Dearden and Becker, 2004). Many young carers enjoy and are proud of their caring role. However, they may suffer adverse effects too. This article profiles young carers, outlines the problems that they face and offers suggestions for ways to support young carers in general practice.
Who becomes a young carer?
Any young person under the age of 18 years may be a young carer. However, children do not become young carers simply because they live in the same household as another person who needs care. Young carers must provide a significant amount of care regularly for another family member. They often do tasks and take on a level of responsibility that is usually assumed by an adult. In particular, absence of a second adult in a family may result in children taking on a caring role when their parent needs support. Overall, 56% of young carers come from lone-parent families (Dearden and Becker, 2004).
Young carers almost always care for another family member (Dearden and Becker, 2004):
52% care for their mother (70% in lone-parent families) 31% care for a sibling 14% care for their father 3% care for a grandparent Up to 12% of young carers care for more than one person
The family members receiving care may suffer from physical health problems, substance abuse, mental health problems and/or learning difficulties. Young carers may also look after parents who abuse drugs or alcohol. It is estimated that 705 000 children in the UK live with a dependent alcohol drinker and 335 000 children with a dependent drug user (Manning et al., 2009).
Young carers may come from any family background, but only 4% of adults with care needs who are looked after by their children are in paid employment. This is especially significant for young carers from lone-parent families who are thus particularly vulnerable to poverty.
Children of refugees and asylum seekers often care for adults with mental and/or physical health problems. Social isolation, unfamiliarity and suspicion of health and social care systems, lack of a stable home base and language barriers all make these children particularly hard to identify and support.
Caring tasks
Like adults, young carers perform all manner of tasks (Dearden and Becker, 2004):
82% of young carers provide emotional support, e.g. observing emotional state, providing supervision, trying to cheer up 68% of young carers perform domestic tasks. These are household chores, e.g. washing, cleaning, ironing 48% of young carers perform general care. These are nursing-type tasks, e.g. giving medication, changing dressings, assisting with mobility 18% of young carers provide intimate care, e.g. washing, dressing, assisting with toilet requirements 11% of young carers provide childcare, i.e. they look after younger siblings 7% of young carers perform a variety of other tasks, e.g. bill paying, accompanying to appointments, translating
Health effects of caring
Much less is known about the health effects of caring on young carers than on adults. However, like adults, young carers often feel worried, anxious or stressed about their caring responsibilities and the person that they care for. Young carers are also more likely to suffer traumatic life events such as death of a parent or sibling.
Young carers may report physical injuries such as muscular and back strains as a result of caring duties, such as lifting, bending or carrying heavy loads. Some may suffer from tiredness due to lack of sleep because they get up in the night to provide care. Others suffer from a poor diet because of financial constraints on their food budget and because they are responsible for preparing and cooking meals and have never been taught basic cooking skills. Finally, young carers may miss doctor's or dentist's appointments thus affecting their health care.
There may be conflict between the needs of the young carer and those of the person that the young carer is caring for. This may lead to feelings of guilt, anger, isolation (no-one else understands their experiences) or being trapped. Young carers may feel that there is nobody there for them and that professionals do not listen or include them. They often feel that their contribution is not recognized or respected. Young carers say that they wish to be listened to, understood and believed. They also wish to be valued, consulted and respected (Frank, 2002).
The pressures placed on young people through caring may result in behaviour problems, and in 2004, a study done in UK primary care reported that ‘carer stress’ from looking after a parent contributed to self-harm (Poustie and Neville, 2004). The Princess Royal Trust for Carers' confidential on-line support service for young carers has also found unexpectedly high levels of self-harm among the young carers that it supports (RCGP/The Princess Royal Trust for Carers, 2008).
Educational and social effects of caring
Young carers may have difficulties playing with other children and joining in with sporting and leisure activities as a result of lack of time due to caring responsibilities and/or lack of parental support. For this reason, young carers often have restricted peer networks both at home and at school. They may also find that they are mature beyond their years and have little in common with same-age peers. These factors may contribute to the relatively high levels of bullying that young carers report (Dearden and Becker, 2003). Many carers continue to have emotional problems into adulthood as a result of caring and may have ongoing difficulties establishing relationships.
For just over one in five young carers (22%), caring has a negative impact on education. Educational difficulties are more common in the 11- to 15-year-old age group (Dearden and Becker, 2003) and include:
Increased absences Lateness Failure to submit homework or coursework or poor quality work Tiredness Poor-concentration and/or lack of attention Underattainment that may restrict higher education options and job prospects long term
Identifying young carers
Young carers can be particularly hard to identify. The child's caring role may not be recognized by the child or the child's family. Many children grow into their caring role and know nothing different. Professionals involved with the family (such as GPs, social workers and school teachers) may be unaware of the child's role. Families may be very wary of involvement of formal support services with their children. Furthermore, children may not want to declare their role for fear of being ‘labelled’ as different by their peers or being stigmatized by the illness that the person that they care for has.
Young carers can be identified in the same ways as adult carers. Another article in this special issue of InnovAiT describes identification of carers in depth. Remember that all the children identified as living with an adult with a long-term condition that affects their ability to care for themselves, or as siblings of a child with a chronic disease or disability, are potentially young carers.
Once families with potential young carers have been identified, it is important to establish what care tasks are performed and by whom before deciding if a child is a young carer and whether the child is carrying out inappropriate caring responsibilities. Some useful questions are listed in Box 1.
Useful questions to ask families with potential young carers
Who helps to care for the person needing care at home? What effect do the condition and personal care needs of the person requiring care have on the family? Is there a child/young person in the family who helps to provide care? If there is a child/young person in the family who helps to provide care, which tasks does he/she do? How does this affect the child/young person physically, emotionally or educationally?
Source: The Children's Society Include Project. Supporting young carers and their families: Information for healthcare professionals (2010).
Responsibility in primary care
It is important to provide support to all carers in order to protect them from the consequences of caring and maintain the family situation. However, in children, this is particularly important. Paragraph 3.62 of the Department of Health Framework for the Assessment of Children in Need and their Families (2000) states that ‘young carers should not be expected to carry inappropriate levels of caring which have an adverse impact on their development and life chances’.
Although primary care services are not responsible for providing care packages, as part of the multidisciplinary team looking after the whole family, the GP and primary care team does have a responsibility to young carers to ensure that they are well supported and enabled to grow and develop normally. The United Nations (UN) ‘Convention on the Rights of a Child’ (adopted and ratified by the UK in 1989) states that every child has the right to participate fully in family, cultural and social life. It is an integral part of the primary care team's role in safeguarding children to uphold this convention. Furthermore, the General Medical Council (GMC) pamphlet ‘0–18 years: Guidance for all doctors’ (2007) stipulates that doctors should be aware of the needs and welfare of children and young people when they see patients who are parents or carers or who are cared for by children or young people.
Providing support for young carers
The Children's Society 2010) produces a checklist for supporting and signposting young carers identified in primary care. It is important to provide a whole family approach, looking at support not only for the young carer but also for the person being cared for and other family members. Suggestions for ways in which you might organize your practice to improve support for young carers are summarized in Box 2.
Ways to improve support for young carers within your practice
Raising awareness about young carers among all the staff in your practice—resources are available from The Include Project; further training may be available via local Young Carers Services Consider nominating one member of staff to be a carers' champion to act as a link to agencies in your local area that offer support to young carers and their families Find out if there is a local Young Carers Service or if support is offered in schools Use the notice board in your waiting area to promote sources of support for young carers and their families. A pack is available from The Include Project
The Children's Society Include Project. Contact: 1st Floor, West Suite, Calford House, 4 Commerce Park, Wessex Way, Colden Common, Hampshire SO21 1WP; Tel: 01962 711511; Fax: 01962 711512; E-mail:
Involving the child's school
Find out if the child's school is involved or aware of what is happening to the child and the caring role that the child has taken on. Do they, or could the child's school, offer sensitive support? Discuss this with the young carer and family. If the young carer and family are in agreement, contact the school nurse for help or find out if the child's school has a lead teacher to support young carers and contact that teacher.
Assessment for the person with care needs
Young carers perform their caring roles because of unmet care needs, but no care package should rely on the inappropriate caring role of a child. Consider contacting the local Adult Services Department and referring the family member who has care needs for an assessment of needs under the National Health Service (NHS) and Community Care Act 1990.
Disabled parents may value support to enable them to carry out their parenting role. The Disabled Parents Network provides useful information and support (Box 3).
The Whole Family Pathway' is an on-line resource signposting practitioners to support available for families (The Children's Society/The Princess Royal Trust for Carers/Disabled Parents Network, 2008). It is also a useful map for families to follow to inform their choices.
Information and support for young carers
The Princess Royal Trust for Carers. Website: www.carers.org; YCNet for young carers—website: www.youngcarers.net
The Children's Society Include Project. Website: www.youngcarer.com; A-Z Listing of Young Carer Projects: www.youngcarer.com/showPage.php?file=projects.htm
NHS Carers Direct. Tel: 0808 802 0202. Website: www.nhs.uk/carersdirect/young/Pages/Youngcarershome.aspx
Direct.gov. Website: www.direct.gov.uk/en/CaringForSomeone/CaringAndSupportServices/DG_4000194
Carers UK. Website: www.carersuk.org
NHS Children First. Age-specific health information for children. Website: www.childrenfirst.nhs.uk
Information on mental health issues designed for young people. Website: www.youngminds.org.uk. Information and support for children caring for someone with cancer. Websites: www.riprap.org.uk or www.macmillan.org.uk/Cancerinformation/Ifsomeoneelsehascancer/Youngcarers2010.aspx
Information and support if a sibling has special needs, chronic illness or a disability. Websites: www.sibs.org.uk or www.cafamily.org.uk
Information about drug and alcohol issues. Websites: www.adfam.org.uk, www.nacoa.org.uk, www.starsnationalinitiative.org.uk or www.talktofrank.com
Disabled Parents Network. Website: www.disabledparentsnetwork.org.uk
The Cruse Bereavement Care Youth Involvement Project (RD4U). Website: www.rd4u.org.uk
Winston's Wish. Website: www.winstonswish.org.uk
Assessment for the young carer
Like adults, young carers are entitled to referral for a carer's assessment. Consider referring the young carer to the Children's Services Department for an assessment under the Common Assessment Framework. A young carer assessment should automatically trigger a community care assessment or review of the person being cared for.
Some young carers and their families are reluctant to admit the child's role as a carer and fearful of seeking help from social services but would value sensitive support. Contact your local Children's Services Department for advice, keeping the identity of the family anonymous to protect confidentiality. If the young carer is caring inappropriately or coming to any significant harm as a result of caring duties or is in danger of being neglected as a result of a family member's illness, then you must take action, even if the family refuses help. Under the 1989 Children's Act, it is compulsory to refer to the Children's Services for an assessment if you feel that a child is ‘in need’ or ‘at risk', with or without the consent of the parent(s). However, it is not always easy to decide if a young carer is ‘in need’ or ‘at risk’. If you are unsure what to do, consider contacting your local children's safeguarding lead for advice.
Young Carer Services
Young Carer Services provide specialist advice and support for carers under the age of 18 years. Always consider referring any young carer identified to your local service. A full list of local Young Carer Services is available on the Children's Society website (Box 3).
Information provision
Age-appropriate information can be helpful for young carers. Address any worries the young carer may have. A list of useful websites is included in Box 3. The NHS Children First website (Box 3) provides health information designed for children.
A major worrying task is that most young carers are responsible for giving out medication to the person they care for … They were worried that one mistake could be fatal.
Morgan, R. Children's Rights Director for Commission for Social Care In: Being a young carer. Views from a Young carer's Workshop (2006)
When prescribing medication for any patient, always consider whether a young carer may be administering it. Is that appropriate? Does the young carer and/or family need support? Try to find ways of relieving the young carer of this responsibility or consider providing training for the young carer if appropriate.
Conclusions
Young carers are a particularly vulnerable group of carers with their own unique problems and needs. It is important as GPs that we remain vigilant to the fact that young people may be carers and try to support them in their role, ensuring that they are not performing tasks that are either excessive or inappropriate and protecting them from adverse effects of caring.
Case study
Eloise is 16. The last time that she was seen in your surgery was nearly 4 years ago, even though she has been registered with you for over 10 years.
One day Eloise comes to see you in the surgery very tearful. She tells you that her father split up with her mother over a year ago and now lives in another town. She is struggling to cope with college and looking after her mother who is disabled with multiple sclerosis. Her mother is also registered with your surgery but you do not see her frequently either and were under the impression that she was largely self-caring.
What might you do to support Eloise?
Key points
2001 UK census data showed that there were 175 000 carers under the age of 18 years in the UK; more recent survey data suggest that this is an underestimate and up to one in eight secondary school children provide a significant amount of care for another person Young carers are most likely to provide care for another family member and may do all manner of tasks—from providing emotional support to performing intimate care tasks Caring may adversely affect a young carer's physical and emotional well-being, social functioning and educational achievement Identification of young carers may be difficult—when seeing any patient with learning disability, a physical or mental health problem or history of substance abuse, think: ‘Is there a young person providing care in this household?’ In providing support to young carers and their families, consider support from the school, referral for social services assessment, information provision and signposting to other support agencies
Footnotes
The case history included in this article is entirely fictional. Any resemblance to any living persons is entirely coincidental.
Acknowledgements
This article was prepared with the assistance of materials supplied by The Children's Society Include Project and is based on the Royal College of General Practitioners (RCGP) e-carers on-line learning programme. To access this resource and find out more about carers, the problems that they face and ways that they can be supported in primary care visit website 
.