It is more than 25 years since myself and colleagues began our research on children with caring responsibilities (young carers) and set up the Young Carers Research Group (YCRG) here at Loughborough University.
The publication in January of the national omnibus survey of young carers (published by the Department for Education) is the culmination of this research and of many years working alongside children, families and health and social care professionals in order to understand the nature and extent of children’s caring responsibilities when parents have serious illness or disability.
The national survey is the first of its kind to obtain data from more than 79,000 families across England in order to identify children with caring responsibilities and to compare their experiences to children who do not have to provide care. The results show that as carers, children carry out a range of responsibilities in the home, including practical household duties such as cooking and cleaning; 1 in 4 children undertake nursing type responsibilities, for example, bathing and toileting parents and administering medication; and many children (57%) also provide emotional support to parents, especially when they have mental health problems. Despite this, less than 1 in 5 children receive a formal needs assessment and nearly two thirds receive no support at all either from health or social care services or from family members or friends.
For some children, the effects of caring are far reaching, especially when it is unrecognised and unsupported - caring can have adverse consequences for children’s physical, mental and emotional wellbeing as well as their education and transitions into adulthood. For years government policy that addressed the needs of young carers and their families was piecemeal and inconsistent but in 2015, thanks to input and evidence from myself and colleagues in the YCRG as well as national charities and campaign groups across the UK, two new pieces of legislation were introduced: the Care Act, 2014 and the Children and Families Act, 2014. DfE commissioned the omnibus survey in 2014 to help inform and develop further guidance for professionals based on this new legislative framework.
Evidence from this research (both the newly published national omnibus survey and the qualitative survey published in 2016) shows clearly that more work needs to be done by professionals in both adult and children’s services to improve the identification, assessment and provision of support to young carers and their families so that the consequences of caring for children do not seriously undermine their childhood experiences and their transitions into adulthood.
For the past two-years, 14-year-old Gemma has been caring for her mother who has Schizophrenia – a responsibility she is scared to tell her teachers and other pupils about.
Much of the caring that Gemma (not her real name) does is emotional care – sitting with her mother, Pauline, when she is feeling down or upset, trying to ‘cheer her up’, and reading to her.
Sometimes, says Gemma, she tries to make her mother laugh by telling her funny stories and encouraging some structure and normality in her life.
But Pauline’s condition is a lottery of ‘good days’ and ‘bad days’.
On ‘good days’, says Gemma, she will be the mother she remembers – happy, fun to be with.
However, on her ‘bad days’ Pauline hears voices and gets very upset around people.
On those days, she rests in bed and shuts herself off.
To compound the pressure, Gemma has not told anyone at school or outside her close circle of friends about her mother’s illness – she fears ridicule and doesn’t believe her teachers will understand the family’s situation.
When Gemma misses school she does so to be with her mother - which has an impact on her education.
Even in class, Gemma admits she is often not able to concentrate because she is worried about her mother – an anxiety which stems from an occasion when she returned home from school to find her mother had been admitted into psychiatric care.
Gemma’s father is unemployed and searching for work which makes the family’s situation difficult in other ways.
But it does mean he is available for the practical household duties, which otherwise would be challenging for Gemma to balance with her education and her mother’s needs.
Recently, Gemma has been given the number of her local young carers group and she is planning to contact them to see if she can get some help and support for herself and also for her family
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This article appears in our new digital magazine VOLUME.