Social Security Experience Panels: Young Carer Grant - initial findings

Understanding and connecting with terminology

Many of the young carers were familiar with this term and would use it to describe themselves or their role. Some felt very confident describing what this means, or had a description that they had used before with friends or in school.

However, understanding of the age criteria for young carers varied between groups. Some felt that a “young carer” was up to, or including the age of 18. Other felt that it would include people up to the age of 21 or 25. A number of participants stressed that many young carers are under the age of 16. Others commented that caring for someone doesn’t necessarily change or stop after you leave a certain age bracket.

Most participants associated the phrase “young carer” with caring for a family member. Some suggested that it could also be someone else – for example a partner, friend, or neighbour. Others felt that it is someone that you are really close to, or suggested that it was someone that you don’t feel that you have a choice on whether to care for them or not. Some suggested that it isn’t important who you care for, but rather it is what you do and the impact that it has on you.

“I used to care for my upstairs neighbour, it can be other people outside your family. But you still have to be close to them in a sense.”

Some said that they didn’t always tell people that they are a young carer, or find it difficult to talk about with friends. Reasons for this included not wanting to be labelled or thought of differently, wanting to avoid questions about it, or feeling that their situation is “not normal”.

I won’t always tell people what I’m doing – I might say I’m going to a dentist appointment.

A small number said that they did not identify with the term, and although they had caring responsibilities they would not describe themselves as a young carer. Some also said they preferred the term “young adult carer”, or just preferred “carer”, or said that it’s a “compromise” term but “can’t think of a better one”.

“I prefer just a carer, young carers aren’t doing any less than an adult”

There was a lack of consensus about terminology used between different groups and even among different young carers within groups. In particular, this related to when participants would stop using the term “young carer” and instead described themselves as “young adult carers”. Some used the term “young adult carer” after young carers had left school. Others used this term from the age of 18. Some young people used the term “young adult carer” from the age of 16.

It is worth noting, however, that the focus groups so far have been with young carers who are affiliated with a group, most of which describe themselves using the language “young carer” or “young adult carer”. It is therefore possible that they are more familiar and comfortable with this language than those who have caring responsibilities but are not part of a group. More research is required in order to understand how comfortable those not affiliated with a group would feel using this language.

This was also something highlighted by many of the attendees, many of whom said that they did not describe themselves as a young carer until someone approached them about their caring role, or told them about the group. Some said that they had been caring for their family member for such a long time (or their whole life) that they were unaware that their situation was any different from their peers until this was made clear to them by a teacher, social worker, medical professional or other support worker.

In terms of the name for the grant, many participants felt that “Young Carer Grant” is a useful name as it says who it is for, but some felt it would be helpful to include more information about the age and eligibility criteria when advertising the grant in order to make it clearer who the grant is for. Others felt that if it was called something else then people would be able to apply without their friends knowing that they were a carer, and indicated a degree of stigma associated with the term.