Young Carers

Scope of young caregiving

A young carer is a child or young person up to the age of 25 years whose life is affected by the need to provide care for a family or household member who has an illness or disability.

In Australia, there are approximately 347,700 young carers (5.2% of all people under 25). [1] The first US national research survey on young carers identified 1.3 million children and adolescents aged 8-18 who participate in various types of caregiving activities. [2]

The young person as a caregiver

Children and young adults in many countries are, active financial contributors to the family unit. However, data collection processes may not recognise that a primary carer is a child or teenager. [3]

This may include a child or young person who provides direct personal care to another person, who takes on a supportive role for the main carer, or who undertakes domestic duties as a result of the need for care. Young carers can sometimes be given too much responsibility for their age (eg, responsible for medication administration and drips). If they undertake physical care and are not of adult strength, they can be injured. They can also suffer other physical manifestations of their caring role such as headaches and insomnia.

Young carers can suffer great emotional distress if they do not have people who support them by respecting their efforts to care, or by understanding the burden they carry. They may require assistance in helping them manage, and in organising an appropriate care circumstance. Families, especially those where there has been divorce or deaths can have additional challenges in coping together. Children and adolescents can feel caught in the middle. Seeking support from an experienced counsellor who understands about serious illness and its consequences can help young carers to keep on caring well. [4]

Caring for someone who is seriously ill can interfere with schoolwork and may lead to time away from school. It may also mean that they are tired and listless in class. Young carers are often invisible to health professionals and teachers. Young carers may not be able to take advantage of ordinary social or education opportunities because of the other person’s need for care, which can lead to isolation. These needs may arise on a regular or on an occasional basis. [5]

Caring for a parent or grandparent who is ill and dying is very psychologically demanding and young people are at special risk of depression and overwhelming anxiety.

Care planning and provision

There is broad agreement that it is inappropriate for children to assume major responsibility for personal care, emotional support and domestic duties when parents are unable to do so. But there is a difference of opinion as to the best policy and practical response. [6] Targeting the family as a whole and identifying the socio-economic needs of the family unit, in particular their financial vulnerability, provides a useful starting point. [7] Referral to the social worker in the multidisciplinary team can ensure these matters are addressed.

The challenge of physical care for a seriously ill patient requires substantial liaison between nursing staff, both hospital based and community, the general practitioner and social worker. Addressing the family dynamics in regard to care responsibility is crucial for assisting in a peaceful death for the patient, and healthy bereavement for the children / young adults.

Identifying adult sources of support such as ex partners, aged parents, siblings, and family friends is a crucial first step in supporting young caregivers. This improves the likelihood that the young caregiver/s will not be emotionally and socially abandoned following the death of the parent.

Resources specific to children and adolescents

Young carers may need assistance to understand and identify themselves as a young carer. They may then be able to access support. Young carers may also be financially vulnerable. Social work assistance through Centrelink may be valuable. School support and involvement may also be appropriate to ensure that their education needs are being met.

Social workers or psychologists in the hospital and in community health centres can provide assistance. Those who work in palliative care or have experience of end-of-life care can help young people consider what kind of information they need.

An excellent website for young carers, Reachout has tips for all kinds of young carers. The Youth Beyond Blue and Headspace websites also provide information and help for young people.

Carers Australia provides information and support for and about young carers in all States and can be contacted on Freecall: 1800 242 636. They have a network across the country for young carers. They also produce a booklet for parents of young carers, 'Supporting families supporting young carers.' This is available as part of the Young Carers Information Kit that is distributed by state and territory Carers Associations.

Policies and resources

PubMed Searches

  1. Australian Bureau of Statistics. Disability, ageing and carers, Australia: Summary of findings, 2003. 2004; ABS cat. no. 4430.0.
  2. Hunt G, Levine C, Naiditch L. Young Caregivers in the U.S. report of findings September 2005. Bethesda, MD: National Alliance for Caregiving; 2005.
  3. Siskowski C, Diaz N, Connors L, Mize N. Recognition and assessment of caregiving youth in hospice and home healthcare. Home Healthc Nurse. 2007 Jul-Aug;25(7):433-8.
  4. Cree VE. Worries and problems of young carers: issues for mental health. Child Fam Soc Work. 2003 Nov;8(4):301-9.
  5. Thomas N. 'Your friends don’t understand’: Invisibility and unmet need in the lives of ‘young carers’. Child Fam Soc Work. 2003 Feb;8(1):35-46.
  6. Olsen R, Parker G. A response to Aldridge and Becker – 'Disability rights and the denial of young carers: the dangers of zero-sum arguments'. Critical Social Policy. 1997 Feb;17(50):125-33. 
  7. Aldridge J, Becker S. Children who care: Inside the world of young caregivers. Leicestershire: Loughborough University; 1993.
Last updated 18 January 2017