The Hidden Caregivers: Young People Taking on a Larger Role

New research shows that many young people have significant caring roles at home.

Posted Sep 14, 2018

Over the last two decades, it has become increasingly recognized that many young people take on a caring role for members of their family who suffer from an illness or disability. Research is important to increase the awareness of professionals from healthcare, education and social services as well as for the development of sustainable policies and intervention strategies.

The BBC has just released (on Thursday, September 13, 2018) the results of a survey they carried out in collaboration with the University of Nottingham's School of Education into the prevalence of caring in young people in the United Kingdom. The survey used the Multidimensional Assessment of Caring Activities (MACA-YC18).

Developed at the University of Nottingham, the MACA-YC18 is a widely used and validated inventory of caring activities by children and young people (see reference below). Scores on the tool have a possible range of 0 (indicating that no caring is carried out) to 36 (indicating the highest amount of caring). The Manual states that scores of 10-13 indicate a moderate amount of caring activity, 14-17 a high amount, and a score of 18 is used to indicate a very high amount of caring. 

Around a fifth of the 925 young people aged between 11 and 15 years who were surveyed were identified as having an ill or disabled relative at home to whom they provided some level of care. Of course, many of these young people will not be overburdened by their responsibilities. Helping around the home when there is someone with an illness or disability is, in itself, not necessarily a problem and may even be a rewarding and growthful experience. However, just under a third of those who were identified as doing some caring scored 14 or more on the MACA-YC18, and just under a tenth scored 18 or more.

Assuming these figures generalize to the wider population of young people, these findings suggest that approximately 7 percent of all young people have a significant caring role in the home for an ill or disabled relative, and 3 percent of these may be very seriously overburdened with responsibilities.

Most frequently, caring by a young person was for a mother or a sibling with a physical disability. Caring activity consisted mostly of domestic activities, household management, and emotional care. 

Being a young carer can affect attendance and performance at school. It is important that young carers are given the support they need so that their lives are not adversely affected by these experiences. Educators and all those who work with young people need to be aware of the difficulties faced by young carers.

The full scientific report of our findings is yet to be published, but these initial figures released by the BBC point to a serious social issue that deserves attention from policymakers, educationalists, and new research to understand the lives of young carers and the effects on them and their futures.

Read the BBC report by Claire Kendall

References

Joseph, S., Becker, S., Becker, F., & Regel, S. (2009). Assessment of caring and its effects in young people: development of the Multidimensional Assessment of Caring Activities Checklist (MACA‐YC18) and the Positive and Negative Outcomes of Caring Questionnaire (PANOC‐YC20) for young carers. Child: care, health and development, 35(4), 510-520.