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Section 1: Becoming carer aware

Introduction

Welcome to Section 1 of the Carer Aware at University course. This section will give you an opportunity to hear directly from carers around the kind of responsibilities they have and the impact of caring on their health and wellbeing. It will also cover Scottish legislation and policy that relates to carers.

All university staff can make a difference to the experience and success of a student carer’s university journey. Recent research into the Student Experience in Scotland, carried out by Carers Trust Scotland, tells us that carers really benefit when staff understand the challenges they face in balancing university and home life.

The Student Carer Experience in Scotland, Carers Trust Scotland (Martin, 2020, p. 29)

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An image of a quotation from Student Carers. It says in blue font: ‘In order to achieve success we have a lot to balance. There are times where it’s not easy to balance this and need the university to step in and give support.’

The Student Carer Experience in Scotland, Carers Trust Scotland (Martin, 2020, p. 29)

Section learning outcomes

On completing this section, you will be able to:

Demonstrate an awareness of who student carers are and what they do.
Identify student carers in your university.
Provide an informed response when engaging with a student carer.
Support student carers to manage their health and wellbeing or signpost them to appropriate support.
Reflect on your own practice and how you can contribute to better outcomes for student carers.

Now go to 1.1 Who is a carer?

1.1 Who is a carer?

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A picture of a woman with her arm around a boy who has a learning disability, both smiling, with a man looking at the boy and also smiling.

Carers Trust Scotland and the Scottish Funding Council define a carer as:

Anyone who provides unpaid care, for a friend, partner or family member, who due to illness, frailty, disability, a mental health problem or an addiction cannot cope without their support.

(Carers Trust, 2020)

We recommend you use this definition in your institution to maintain consistency and clarity.

Activity 1.1 Reflection

Timing: Allow around 5 minutes

Three in five of us will become carers at some point in our lives (Carers UK, 2020) so caring may well be very close to home for you. As you go through the course, please take a moment to reflect on your own life and people you know. What is your experience of caring and what impact has it had on you or the lives of those around you?

Make some notes in the text box below or in your learning journal if you’re using one.

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1.2 What do carers do?

Carers are of course individuals, so will have different experiences of caring. In the following video, Hannah, Steven, Charlotte and Rebecca talk about their caring roles.

Download this video clip.Video player: Video 1.1

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Transcript: Video 1.1 The role of a carer

HANNAH SCOTT ROSE

I give to my family members, is I help with medication, showering, helping my dad to get dressed, taking them out places, going to the chemist, shopping, feeding the cat, just general things around the house, and general support.

STEPHEN SMITH

So my experiences of being a young carer were over a five to seven year timeline. I became a young carer when I was about 12 or 13 years old when my Dad was diagnosed with oesophageal cancer. Through this time, he went through multiple chemotherapy sessions and an operation. Eventually he got better and went back to work and everything stayed fine for a couple of years, then two years later my Mum was diagnosed with a brain tumor and my Dad was re-diagnosed with lung, liver and stomach cancer. Through this time, my Mum's condition got worse again so she had to have an operation to remove the brain tumor and over the next year it then grew back to the same size and she needed another operation. My Dad's condition has stayed stable ever since, so its just dormant and its not grown. Over that year when Mum's tumor grew again, she had to have another operation and during this operation she had a stroke and she was paralysed down her left side completely. And then about a year and a half after that, she unfortunately passed away due to all of the complications that she'd had. Throughout this time, my role as a young carer was from small tasks just doing things around the house, going to get shopping, and also being an emotional support and shoulder to lean on for both my Mum and my Dad, we were partaking in the caring roles for each other. The other caring roles I would do were quite in depth, so it would be personal hygiene, taking them to the toilet, showering, etc. things like that. And, also unfortunately at the end when it came to bereavement, it was then also a huge support on Dad and the rest of the family and also organising funerals and things like that. So for me there was definitely a before, during and after period which was learning I was going to be a young carer, and then actually during being a young carer was kind of up and down so there was times where everything was really full-on and you didn't have a minute to do anything else because caring was your number one priority, and then to when everyone was back and healthy and there wasn't much else going on and then all of a sudden we go back to 100 again and you'd be doing all of these caring roles, so it was definitely a big priority for me.

CHARLOTTE MUIR

So, my caring role probably started when I was about eight. I knew my Mum was never very well, but I definitely noticed that I started doing more active roles such as waking her up for teatime, because she would often have an afternoon nap, or even helping her put her tablets together because she has arthritis in her hands and she couldn’t physically pop the tablets out, so I would help her with that. Also, occasionally, I would help her bath, because she couldn’t lift her arms up above her head, so I would wash her back for her. Then when I got older, it got worse. She doesn’t have any specific illness, but she has just a multitude of everything. So, one of the things is diabetes, so I would help her do her blood test, check her blood sugar levels, because again her hands, she couldn’t do it very easily, and then I would help administer insulin if she was struggling.

End transcript: Video 1.1 The role of a carer

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Video 1.1 The role of a carer

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The student carers in the videos have different caring roles and care for family members with different conditions and support needs. Unpaid carers can have many different roles and responsibilities, which can vary in length of time and impact.

Activity 1.2 The role of a carer

Timing: Allow around 5 minutes

Click on the image below then click on ‘Show examples’ on each care category card to see a list of tasks that carers may carry out.

View interactive version

Figure 1.1 Carer tasks (interactive)

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Seven cards which contain seven carer tasks and can be flipped to reveal examples.

The first card is on a blue background with a drawing of a bubble bath with water from a shower spraying into it. It is titled ‘Providing personal care’. There is a blue ‘show examples’ button at the bottom of the card, which when hit flips to reveal a list of examples: help getting dressed, personal hygiene, showering/bathing, taking them to the toilet, waking them up.

The second card is on a yellow background with a drawing of a plate and knife and fork. It is titled ‘Housework and cooking meals’. There is a blue ‘show examples’ button at the bottom of the card, which when hit flips to reveal a list of examples: cleaning, cooking, feeding the cat, housework, making sure they eat.

The third card is on a green background with a drawing of a larger outline of a person standing behind three smaller outlines of people. It is titled ‘Help looking after other relatives, such as parents or siblings. There is a blue ‘show examples’ button at the bottom of the card, which when hit flips to reveal a list of examples: general support, help getting ready for school, help with homework, emotional support.

The fourth card is on a pink background with a drawing of three different sized stacks of coins. It is titled ‘Managing household budgets and shopping’. There is a blue ‘show examples’ button at the bottom of the card, which when hit flips to reveal a list of examples: doing shopping, going to the chemist, budgeting.

The fifth card is on a dark blue background with a drawing of a speech bubble with a black heart in the middle. It is titled ‘Emotional, psychological and medical support’. There is a blue ‘show examples’ button at the bottom of the card, which when hit flips to reveal a list of examples: emotional support, texting when anxious, administering medication, checking blood sugar levels.

The sixth card is on a blue background with a drawing of a calendar. It is titled ‘Attending and managing appointments with/for the cared-for person’. There is a blue ‘show examples’ button at the bottom of the card, which when hit flips to reveal a list of examples: making and keeping appointments, bringing to hospital/GP for appointments, arranging transport, taking them out places.

The seventh card is on a pink background with a drawing of a checklist with each box ticked and a magnifying glass over the first tick box. It is titled ‘Dealing with formal documents and external agencies on behalf of the person they care for’. There is a blue ‘show examples’ button at the bottom of the card, which when hit flips to reveal a list of examples: completing assessment forms, engaging with social, health or care workers, keeping note of prescriptions and medical history, organising funeral.

Figure 1.1 Carer tasks (interactive)

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Take a few moments to make notes in the text box below or in your learning journal if you’re using one.

To use this interactive functionality a free OU account is required. Sign in or register.

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Facts about student carers

Now you’ve met some of the student carers who have generously shared their stories. You’ll be meeting them again as you work through the course.

Here are some of the things you should know about carers:

Anyone, regardless of age, gender or socio-economic status that can become an unpaid carer at any time in their life, and their caring role can change over time.
Not all unpaid carers identify as such or recognise that they are a carer.
Being a carer can be for a short or long period of time.
A carer may provide care for more than one person.
Caring is not a Monday to Friday, 9 a.m. to 5 p.m. role.
Caring can impact carers in different ways. There is no such thing as a typical carer.
Carers are often a hidden and seldom heard group. Many are worried about disclosing their caring responsibilities.
Carers have a range of transferable skills and knowledge.

Five facts about carers in Scotland (Carers UK, 2020)

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An image of an orange/pink box with the words ‘5 facts about carers’ in white font. There are four boxes below that are a lighter orange/pink colour.

The top left-hand box contains a picture of a flag that is white with a red heart in the middle. It reads in black writing below the picture: There are 759K Carers in Scotland.

The top right-hand box contains a picture of three people. It reads in black writing below the picture: There are 49K Young Carers in Scotland.

The middle left-hand box contains a picture of a hand being held out with a red heart over the top. It reads in black writing below the picture: There are 29K Carers under 16 years old.

The middle right-hand box contains a white picture of the dollar sign. It reads in black writing below the picture: 50% of Carers are struggling to make ends meet financially.

The last box at the bottom contains a picture of nine purple figures stacked in a pyramid on the left-hand side. The right-hand side of the box contains black writing that reads: By 2037 we will have 1M Carers in Scotland.

Five facts about carers in Scotland (Carers UK, 2020)

1.3 Health and wellbeing

Earlier in this section, you heard from carers talking about the kinds of roles or responsibilities they have in their caring role. Understanding the range of experiences carers have will help you to develop supportive strategies to keep student carers in university and on a successful path.

Now let’s look at how caring might affect a carer’s health and wellbeing.

[Caring] can often lead to us being more isolated from our peers as they simply cannot empathise with the often traumatic situations we have come from.

(Martin, 2020, p. 23)

Now let’s hear from Rebecca again as she talks about the impact of her caring role on her wellbeing while at university in this video.

Download this video clip.Video player: Video 1.2

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Transcript: Video 1.2 My caring role and the impact on university

[My caring role and the impact on university]

REBECCA BAXTER

For my caring role, I care for my brother who has autism spectrum disorder, ADHD, and severe anxiety and depression. And I also care for my Mum who has complex regional pain syndrome in her right leg. So, for this, I provide a lot of emotional support to both, as well as just making sure my brother eats enough, because part of his autism is he doesn’t always recognise when he’s hungry. I also do a lot of physical things for my Mum like cooking and cleaning, and then so that her leg can rest, I just do small things around the house or get things for her so that she doesn’t have to keep getting up and down. And then for my brother, it’s a lot of emotional support, especially in the evenings, because his mental health is worse at night when he’s trying to sleep. So, it’s often texting at night just to calm his anxiety down so he can sleep well.

At university, it just means I get more late nights… well, maybe not more late nights than the average student, but my late nights aren’t always drinking, sometimes it is just I’m wanting to sleep because I have an early morning lecture tomorrow and I have to write an essay or something, but I can’t because I’m just texting my brother to make sure that he’s okay.

[The emotional impact of caring while at university]

The emotional impact of a caring role at university definitely took its toll on me in my first semester because I wasn’t used to it because it was my first time being at uni. So, that was really hard. But over Christmas, I spoke to my Mum and she suggested that when I’m tired because I’ve been speaking to my brother late, like just put my laptop down, don’t try and do the assignment, like I can get in bed and watch a funny movie or a movie I enjoy to cheer myself up again because there’s no point writing an essay while tired, because it’s not going to be as good, so I just need to take that moment to relax and not be tired and stressed because that isn’t going to produce a good assignment. And recently I’ve also been going on just some walks to clear my head so that I’m not just in my flat all the time and I’m getting a change of scenery and able to relax without thinking about anything, like just putting my music in and not doing anything, really.

End transcript: Video 1.2 My caring role and the impact on university

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Video 1.2 My caring role and the impact on university

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Activity 1.3 Supporting student carers

Timing: Allow 5–10 minutes

Having watched Video 1.2, what kind of changes could you help put in place to support student carers like Rebecca in your institution? Make some notes in the text box below or in your learning journal if you’re using one.

Here are some examples to get you started:

Simplify an existing system or process.
Raise awareness with colleagues or carers.
Build internal partnerships with colleagues or externally with other institutions or organisations.
Add resources to the carer page on your website.
Share health and wellbeing information on social media or through your student carer networks.

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Facts about student carers (Sempik and Becker, 2014, p. 3)

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This is an image that contains six different pictures and statistics.

The top left-hand one is a picture of a yellow heart with a plaster over the right side of it. 39% is written in blue directly below the picture in a large font size. Black writing in a smaller font size is directly below which says: rated their physical health as either ‘just ok’ or ‘poor’.

The top right-hand one is a picture of a pink head with three white cogs where the brain would be. 45% is written in blue directly below the picture in a large font size. Black writing in a smaller font size is directly below which says: reported having mental health problems.

The middle left-hand one is a picture of a green head with a white exclamation point and question mark where the brain would be. 56% is written in blue directly below the picture in a large font size. Black writing in a smaller font size is directly below which says: were experiencing difficulties because of their caring role.

The middle right-hand one is a picture of a blue graduation cap with a blue x on the left of it. 16% is written in blue directly below the picture in a large font size. Black writing in a smaller font size is directly below which says: were concerned that they might have to drop out of university.

The bottom left-hand one is a picture of two overlapping pink speech bubbles. 75% is written in blue directly below the picture in a large font size. Black writing in a smaller font is directly below which says: of respondents informed university staff of their caring role.

The bottom right-hand one is a picture of five yellow outlines of people. 45% is written in blue directly below the picture in a large font size. Black writing in a smaller font is directly below which says: said there was no-one at university who recognised them as a carer and helped them.

Facts about student carers (Sempik and Becker, 2014, p. 3)

1.4 Legislation and policy related to student carers

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A picture of a hand holding a magnifying glass, which shows a path and autumn trees. Around the magnifying glass is blurred while the image in the magnifying glass is clear.

As a staff member who works either directly or indirectly with student carers it is useful to be aware of key pieces of legislation and how they protect carers’ rights in law, explicitly or implicitly. These are:

Carers (Scotland) Act 2016
Equality Act (2010)

Carers (Scotland) Act 2016

The Carers Act is intended to ensure consistent support for carers and young carers. It is designed to support carers’ health and wellbeing and help make caring more sustainable. Measures include:

a duty for local authorities to provide support to carers, based on the carer’s identified needs which meet the local eligibility criteria
a specific adult carer support plan (ACSP) or young carer statement (YCS) to identify carers’ needs and personal outcomes
a requirement for local authorities to have a service for carers which provides information and advice on, amongst other things, emergency and future care planning, advocacy, income maximisation and carers’ rights
a requirement for the local authority to consider whether that support should be provided in the form of a break from caring (Care Information Scotland, 2020).

A provision of self-directed support (Self Directed Support Act 2013) is also included.

Some of this support may already be in place for your student carers if they are eligible for it. If it is, the university can provide complimentary support that enables your students to balance their caring responsibilities with their studies and have a life alongside caring.

If students don’t have any of this support in place, you can advise them of their eligibility and encourage them to contact their local authority, local carers’ centre or scotland@carers.org

Equality Act (2010)

While caring is not named in the Equality Act 2010 as one of the protected characteristics, it provides some protection against discrimination or harassment because of caring responsibilities. This is because carers are ‘associated’ with the person they care for who is protected, for example because of their age or disability (Gov.uk, 2020).

We will explore the Equality Act and discrimination by association in more detail in Section 2.

Activity 1.4 Your Equality, Diversity and Inclusion policy

Timing: Allow around 5 minutes

Your university will have an Equality, Diversity and Inclusion policy that reflects its commitments under the Equality Act. Have a look at the policy. Does it mention carers specifically?

Make a note of what it says in the text box below or in your learning journal if you’re using one.

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Outcome Agreements

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An image of ‘Scottish Funding Council’ written in purple, with ‘promoting further and higher education’ written below in turquoise. On the left of the writing is the logo for Scottish Council Funding consisting of purple and turquoise circle segments.

In addition to the legislation that protects carers, students are supported by recommendations from the Scottish Funding Council (SFC) that relate to carers in higher education. The SFC outline their expectations through an Outcome Agreement with each college and university.

What is an Outcome Agreement?

Outcome Agreements set out what colleges and universities plan to deliver in return for their funding from us. SFC Outcome Agreement Managers work with institutions to develop their Outcome Agreements.

(Scottish Funding Council, n.d.a)

SFC recognises student carers as a group ‘at risk’ of not achieving their full potential, from aspirations through to successful outcomes and employment.

(Scottish Funding Council, n.d.b)

The SFC undertakes an annual Outcome Agreement process that provides a mechanism for universities to report on the impact institutional strategies have on a number of groups, including student carers.

The SFC lay out the following recommendations to universities in relation to their responsibility towards student carers:

Universities will continue to improve support for students and staff with caring responsibilities.
Universities should use Carers Trust Scotland’s definition of a carer and be encouraged to work in partnership with Carers Trust Scotland.
Universities are encouraged to fully support and participate in the Carers Trust Going Higher for Student Carers: Recognition Award.
Institutions are required to publish a Student Carers Policy and are recommended to have a signed Student Carer Statement of Intent.
Student carers should have the same level of support as care-experienced students as per the university’s corporate parenting responsibilities.
Universities should provide a named point of contact for student carers for advice and support from the point of entry through to graduation.
Universities should have a dedicated webpage outlining the support available to student carers and how to access it.
Universities should include carers in their widening participation and outreach work.
Universities should include carers in their contextualised admissions policy.
(Scottish Funding Council, n.d.b)
The SFC endorses the Carer Positive award, operated by Carers Scotland, which demonstrates a commitment from employers in providing carer friendly policies and working practice.
(Carer Positive, n.d.)

Conclusion

In this section we got to know Hannah, Charlotte, Stephen and Rebecca, who shared their experiences of caring while studying and the impact of caring on their health and wellbeing. We also looked at the legislative and policy context which supports student carers in Scotland.

We hope this section has given you an insight into the experiences of student carers and an understanding of the support they may need to access, participate and succeed at university. You should feel better equipped to recognise student carers and signpost them to support available within and outside the university.

In Section 2 you will explore the impact of caring on the student journey and the barriers and opportunities a caring role can create.

Section 1: Becoming carer aware