Professionals guide to identifying young carers

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This guide explains how you can help to recognise young carers and support their needs.  It is everybody's responsibility to identify and support young carers and their families.  Even if your professional role centres on working with adults you are in a prime position to identify that a young person may have additional needs as a result of their parent's illness or disability, and to make sure they do not remain unnoticed. 

One of the many ways of supporting a Young Carer is to put them in touch with The Carers Hub. Simply ask their permission (and their parent/guardians if they are under 18) then give the Carers Hub a call on:

0330 123 1937

Young Carers projects are greatly valued by the young people who access them and by their families. A diverse range of approaches have been developed in response to the local needs identified and also to the individual needs of each Young Carer. 

Staffordshire County Council and the commissioned provider 'The Carers Hub' are fully committed to the 'Whole Family Approach' to support Young Carers and their family, providing appropriate interventions and information wherever possible.  We are working together to make sure that relevant services are involved which will help to ensure that Young Carers do not need to take on in appropropriate levels of care.  Using this guide will help you to find out more about Young Carers and how you can help to make a difference to lives of young carers in Staffordshire.

A PDF version of the guide is available in our download section to the right of the page.

Introduction

This guide aims to raise awareness amongst professionals working with children, young people, and their families, the issues facing them and the barriers to them achieving.

It explains who Young Carers are and the types of care that they provide and explores the potential impact that this can have. The guide will then look at how agencies can better support this often hidden and vulnerable group.

Having caring responsibilities is not necessarily a negative experience. Young Carers are often proud of the support that they provide, and do not view themselves as different form their peers. However, support must be available to avoid their caring responsibilities from impacting on their wellbeing and protect them from unmanageable responsibilities that can impact on their emotional, physical, or personal development.

Young Carers are not a homogenous group, why they undertake a caring role will be different dependent on the ‘cared for’ persons additional need. Caring often occurs over time and may grow to meet the emerging needs within the family.

In lots of families the caring role is managed and does not have a negative impact on the child/young person. However even when this is the case, Young Carers and their families have a right to be well informed about services available to them should they wish to access them. This will help to reduce situations in families when there is a change of circumstance that may lead to a crisis and potentially the need for emergency support.

Therefore, the overall aim is to provide a virtuous cycle of support, which ensures that whatever the reason for the caring role, whether it is episodic, always present, or changes in circumstance Young Carers and their families are aware of and can access the necessary additional support.

Defining Young Carers

The term “Young Carer” should be taken to include children and young people under 18 who provide regular and ongoing practical, personal care and/or emotional support to a family member who has a physical, learning or mental disability, or who misuses substances, or where there are issues of domestic violence.

The term does not apply to the everyday and occasional help around the home that may often be expected of or given by children in families. The key features for us are that the caring responsibilities persist over time and are important in maintaining the health, safety or day to day wellbeing of the person cared for and/ or the wider family.

In general, if the caring role and responsibilities are having an adverse effect on the Young Carer’s education or ability to form friendships or undertake social activities and pursuits, this would be an indicator that the situation is becoming unmanageable and an assessment should be requested from The Carers Hub.

Information needed for the referral includes the nature of the caring role, its impact, how often and the extent to which the young person has sole or unsupervised responsibility for an activity which might usually fall to an adult. We also ask the referrer to state what outcome they would like from the referral e.g. to meet other young carers at an activity or group, to have a carers break, to more support in school, to have funding to be able to purchase something that would improve their lives.

When making a referral it is important to remember that:

“a Young Carer becomes vulnerable when the level of caregiving and responsibility to the person in need of care becomes excessive or inappropriate for that child, risking impacting on his or her emotional or physical wellbeing or educational achievement and life chances” The Children’s Society – Key Principals for Practice

Context

One of the barriers to providing support for Young Carers is the fact they remain hidden to services such as The Carers Hub and therefore wider funding for services gets cut. If professionals do not support with identification, then Young Carers will not receive the support they are entitled to and desperately need.

Below are some of the statistics which can be used to develop an impression of the potential numbers of young carers in the UK:

  • There are 175,000 known Young Carers in the UK ( 2% of the general population), with 13,000 caring for over 50 hours per week.
  • In September 2004 the Princess Royal Trust for Carers undertook a survey of over 1,300 young people and found that 12% of 12-19 year olds were providing care. This would correspond to over 1,000,000 carers aged up to 19.
  •  However, 1.3 million children live with parents with problematic alcohol misuse, 2.5 million children live with a parent with a mental health problem and 25,000 with problematic drug misuse.
  • 30% of families that include someone with a mental health problem also have children in the household.
Types of Caring

Care provided by Young Carers can range across a variety of tasks both in and outside the family home. The main categories of care are:

  • Domestic Tasks - Household chores such as cooking, cleaning, washing, ironing, shopping and gardening
  • Emotional Support - Refers to observing emotional state, providing supervision, trying to `cheer up ` the cared for when they are low in mood, talking and listening to adult issues
  • General Care- Refers to tasks such as administering medication, changing dressings and assisting with mobility
  • Personal Care - This category includes lifting, washing, dressing, and assisting with toilet requirements
  • Childcare /Sibling Care- Refers to helping to care for younger siblings in addition to other caring tasks or caring for a sibling with a health condition or additional needs, which sits outside everyday sibling interactions
  • Other responsibilities = Refers to any other miscellaneous tasks such as bill paying, translating, or accompanying to medical appointments
Why do young people care?

The individual circumstances of each Young Carer are unique to their own family situation, however certain factors are likely to influence the reasons behind young people becoming Young Carers.

The structure of the family unit:

  • A young person may become a Young Carer because a parent needs support. This is obviously more common in lone parent families.
  • In other situations, the level of support required may be too much for one to provide, requiring children to become secondary carers supporting the main carer.
  • Other families may contain more than one member with care needs, thus increasing the responsibilities taken on by others.
  • The support available from others, including the extended family also has an impact on the level of care being provided by Young Carers.
  • The type of illness/disability/substance misuse and perception of need. The level of support required can vary widely in accordance with the nature of an illness/disability/substance misuse. They may be stable and managed, or in other cases they may be degenerative or periodic, with sudden and unexpected changes to the care recipients’ condition (common in mental health, MS, Lupus, and arthritis).
  • The timeline of onset, diagnosis, acceptance and requests for support can lead to inappropriate levels of care being provided within the family.
  • Knowledge of support available. Families are not always aware of who they can turn to for support. This can be compounded in situations where families or individuals fear being stigmatised. Families often lack information and knowledge of their rights and how to access available support.

The combined effects of these factors can lead to some young people becoming carers.

The Impact of Caring

Not all Young Carers experience a negative impact as a result of their caring responsibilities but, particularly where other support is absent or limited, the Young Carer is vulnerable to a range of negative effects.

Research has consistently shown that negative impact can occur across the personal, health, educational and employment aspects of a Young Carer’s life.

Personal

  • Young Carers may have limited horizons and aspirations as a result of their reluctance to leave the family home.
  • Limited opportunities to take part in social or leisure activities
  • A fear of professionals is common with Young Carers and their families often reluctant to disclose their situation for fear of judgement or the young person being taken into care. • Young Carers are often more mature that their peers that can lead to a sense of isolation. • Young Carers may feel frustrated about their own needs and the needs of the person they care for, which may result in feelings of guilt. • Low self esteem compounded where their contribution is undervalued and they are excluded from discussion about the family’s needs

Social

  • Bullying – The different life experience between Young Carers and their peers can result in difficulties due to restrictions on friendships, and lack of empathy from those without caring responsibilities.
  • The isolation from peers and feelings of being an outsider can also lead to Young Carers to avoid discussion with adults regarding their caring role which results in them remaining `hidden`.
  • Young Carers may also face bullying or other negative treatment due to the type of illness or condition present in the family. This ` stigma` by association can be particularly prevalent where mental health or substance misuse are present.
  • Cleanliness and hygiene can sometimes be an issue

Health

Health problems may develop for Young Carers due to their role. These may be physical health problems, such as back problems, or mental health problems due to a high level of anxiety or worry.

Emotional

Emotional wellbeing of Young Carers can also be negatively affected by seeing a loved one in pain or dealing with behaviour from a family member which may be irrational, unpredictable and/or hurtful. Bereavement and fear of bereavement will also have an impact on emotional wellbeing of Young Carers.

The presence of problematic substance misuse in the family can distort young people’s perception of safe practice.

Education/Employment

Many Young Carers leave school with low grades or no qualifications (1 in 3 regularly miss school and/or have educational difficulties). Indicators such as missing school, not completing homework, or being tired and distracted are often misunderstood, resulting in them being negatively labelled which compounds social isolation and low self-confidence. A combination of factors such as low self-esteem, reluctance to leave the family home, and low levels of achievement may lead to difficulties in managing the transition into further education or employment. Young Carers have limited access to extra-curricular activities which can hinder personal development. Caring often influences views of the future, leaving some with a reluctance to leave home or pursue post 16 education.

Identifying Young Carers

 Every Young Carer is unique and each person’s ability to hide their responsibility can be vastly different, as can the willingness to trust and confide in professionals.

However, there may be some identifying features which may bring care responsibilities to the attention of professionals.

  • Anxiety or concern over an ill or disabled relative
  • A need or desire to be in regular contact with home
  • Often late or missing from school
  • Secretive about their home life
  • Often tired, distracted, withdrawn or anxious
  • Low self-esteem and self-confidence
  • Isolated or victims of bullying
  • Poor relationship with peers
  • May take on a caring role with younger children
  • May demonstrate confidence when interacting with adults
  • Isolation or withdrawal or behaviour that may be deemed as challenging in a school or youth group situation but is the opposite of behaviour demonstrated at home
  • Back pain or other related pain
  • Outbursts or amplified response to events due to the emotional strain they may be under.
Young Carers from Minority Ethnic groups

Research shows that there is often a lack of knowledge about services and support available for Young Carers from BME groups. This can be further compounded by the stereotype of BEM communities having extended families who will support with caring as part of their culture which is held by some professionals, which can lead to needs being overlooked. There also may be different cultural interpretations of disability causing a further reduction in the take up of services. BME families may also face barriers preventing full access to welfare rights.

These issues are likely to increase the impact of caring responsibilities and reduce the visibility of this group of Young Carers.

Young Carers affected by HIV

Many families living with HIV fear breaches in confidentiality and may be reluctant to access support for young carers. Young Carers are entitled to assessments and support in recognition of their caring role but the fear of professionals finding out about the HIV condition often means Young Carers remain unsupported.

Families with insecure immigration status

Families with insecure immigration status are particularly vulnerable to social exclusion and isolation. They may be very worried about seeking support or services outside of the family due to a fear of deportation. All services should be integrated, inclusive and responsive to the needs of all families including those from a refugee and asylum-seeking background. Specialist information and resources to support these families is available from a range of voluntary and statutory services. See the refugee council website  for more guidance.

Assessing Young Carers and their families – A whole family approach

There is widespread agreement that children should not be undertaking regular and substantial caring responsibilities or inappropriate care tasks. Problems arise when the level of responsibility taken on by the young person is inappropriate to their age and maturity. The Whole Family Approach to supporting Young Carers highlights and promotes the needs of all family members where there are caring responsibilities present.

The Children’s Society has a free online toolkit that provides practitioners with information on the whole family approach.

Family and environmental Factors

  • Low income
  • Inadequate housing
  • Lack of community support
  • Prejudice and discrimination

The main aim of the whole family approach in relation to Young Carers therefore is to ensure that services focus greater effort on early intervention and prevention and that they do so by providing properly integrated support around both the person cared for and the family as a whole.

But who can help?

The Carers Hub was commissioned back in October 2015, by Staffordshire and Stoke-on-Trent, to deliver bespoke services to its Carers across the county, this includes adults and Young Carers as young as 5 years old.

Although we operate as one hub, we have two main offices, one in The Bridge Centre in Birches Head Stoke and SGI Offices, Madford Retail Park in Stafford and alongside this we operate across the county in schools, libraries and community venues.

The Carers Hub can offer support to our Young Carers through some of the following:

  • We offer all Young Carer a full assessment within 14 days of referral
  • We offer allocate a dedicated Keyworker and complete a detailed plan of support
  • In that plan, we might look at different support options within school including a designated person to support the Young Carer, afterschool clubs, school counsellor
  • We might signpost the Young Carer to universal groups within the community
  • We might refer the Young Carer to our own groups or half term activities
  • We might offer first aid, manual handling or Mental Health training
  • We might refer the Young Carer for counselling
  • We might make a request for funding to support a range of needs including accessing hobbies and interests or technology solutions
  • If they are under the age of 12, then we may be able to offer respite breaks once a year with the ‘Honeypot’ group
  • We can put crisis plans and ‘message in a bottle’ in place to give peace of mind when the Young Carer is out at school
  • We could look at CHICKS breaks for over 14 year olds
  • We can offer a discount card with doubles up as an ‘In Case of Emergency’ card
  • We can support with school peer support by running our YouCan program
  • We can look at ‘Buddy ups’ (where we introduce young carers to people in their area who are a similar age and have a similar caring role)
  • We always ensure reviews are completed and Young Carers are able to share their views, wishes and feelings with us.

We need all professionals working with children to refer any Young Carers so they can access the help they need.

The Carers Hub contact details are:

Address:

Stafford:

The Carers Hub, SGI Building, Madford Retail Park, Stafford, ST16 2QY

Stoke on Trent:

The Carers Hub, The Bridge Centre, Birches Head Road, Stoke-on-Trent, ST2 8DD

Telephone: 

0330 123 1937

Email:

info@thecarershub.co.uk

Website:

 www.thecarershub.co.uk – referral forms can be downloaded from the website

Facebook:

@thecarershub

Twitter:

@thecarershub

Please contact us today to refer your Young Carers into us!

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