Invisible Care

As I near a decade of living away from home and my parents, the concerns about them getting older grows stronger by the day. In India, historically and culturally, children look after parents as they grow old, and it is common to see households with three or even four generations living together. The values of care are so deeply embedded in our society, that it is almost expected of a child to take care of their parents when they are old or perhaps even ill. Unfortunately sometimes circumstances may even compel someone to take that responsibility on at an earlier age when they are not prepared for it.

In one of our courses in MA Service Design, we were deeply involved in research about Family Services and Social Care systems in the UK. As I researched deeper, the project brought to the forefront caring responsibilities of young people and its effects on their wellbeing and families. While acknowledging my position of privilege when I say this, to take on the responsibility of caring for my parents when they are old and not fully able to take care of themselves is something that I would do in the blink of an eye. However, when it comes to young children taking care of a parent, do they need to be safeguarded or should they continue to provide for the whole family? This made me question, what about the carers as young as 8? Do they have the knowledge or privilege to make that choice?

I got thinking more about young carers — a person who is below the age of 18, taking care of an ill or disabled family member. The life of young carers is not an easy one, it requires a lot of courage for a young inexperienced person to care for the sick family member, handle domestic responsibilities, look after siblings, manage school, and support the family financially. It is not just the visible tasks young carers are engaged with, but also the ‘worries in their head and in their hearts’ over the health of their family member (Nap et al., 2020). While they have to care about everything, who cares for them? Even though several charities in the UK work towards providing support to young carers, there are still several barriers to overcome and deliver effective support.

The term ‘young carer’ is not always familiar to families and many do not understand or equate this term with their situation. In 2010, research from the BBC and the University of Nottingham found that the number of young carers in the UK was close to 700,000 while the 2011 census identified only around 195,000 young carers (Bernardo’s, 2017). This means that young carers are a largely invisible group.

Studies show that on average, young carers spent four years looking after a relative or parent before they were identified for support (Bernardo’s, 2017). Heavy reliance on families to self-declare is a big problem and many families don’t come forward as they fear further consequences. Even though identification of young carers has been a priority for care systems and charities in the UK, there is still a persisting distinct gap in identification of carers. Bodies like the NHS, social care, GP’s, teachers, and other support systems need to develop more efficient ways of finding and supporting these groups. To solve the problem of identification, it is first important to address the fears of young carers and their families, build a trusting environment for them to come forth and seek the right support they need in order to cope with their situation.

A concerning statistic from a study done by Children’s Society showed that young carers are 1.5 times more likely to be from BAME communities and twice as likely to not have English as their first language. These groups were mostly ‘hidden’ from support services (Bernardo’s, 2017). There is a need to look at the issue of young carers from a social justice angle to tackle visibility and ensure help is equally accessible to all.

2011 census statistics showed that the average age of young carers in the UK is 12, whereas a survey conducted with medical practitioners by Bernardo’s showed that all of them had received referrals for carers under the age of 8. Although there is growing awareness about young carers, there is almost little to no help available for this age group (Bernardo’s, 2017). Moreover, young carers often do not have enough knowledge about the conditions of their family members and have to go through a critical transition phase filled with confusion and worry. There is a gap in knowledge of young carers as GPs and hospitals who were treating their family members are not transferring care information to them. This presents an opportunity to put more support into place before relieving the burden on the young person.

Making the lives and well being of young carers a priority must be a priority for the local governments by allocating funds and investment to solve the barriers of awareness, identification, knowledge and support to a better quality of lives for young carers in theUK. This is especially important and an analysis by the Office of National Statistics in July 2017 showed that unpaid carers save the UK economy almost £60 billion a year (Bernardo’s, 2017).

Although a sensitive topic to tackle, in my opinion, a service designer has the skills to empathise with the young people in these situations. As every person and situation is unique, we need to be able to understand the complex lives of the young carers from different perspectives — their own, their parents, their school or work, the care system, the community, and the government. At the same time, it will be imperative to study the wider perceptions of society of young carers, and how these might create barriers to improvement in their overall wellbeing. By understanding the care system holistically, a service designer will be able to map the current gaps, critically analyse the policies in place, and find opportunities for intervention to provide holistic support to young carers and make their lives easier.

For my major project, I am interested in looking at the impact caring responsibilities have on the lives of young carers, their education, social life, and overall well being. I want to be able to design impactful interventions to define what good care and support for young carers would look and feel like.

Bernardo’s, 2017 Still Hidden, Still Ignored. [online] Available at: <https://www.barnardos.org.uk/sites/default/files/uploads/Still%20Hidden%20Still%20Ignored%20Barnardo%27s%20young%20carers%20report.pdf> [Accessed 11 May 2021].

Nap H et al. (2020) ‘The awareness, visibility and support for young carers across Europe: a Delphi study’. BMC Health Services Research. [online] Available at: <https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-020-05780-8> [Accessed 18 May 2021]

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MA Service Design Student at London College of Communication | Previously Brand Designer and Strategist

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Sayaliwandhekar

Sayaliwandhekar

MA Service Design Student at London College of Communication | Previously Brand Designer and Strategist

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