One of the key differences between services for young carers and adult carers is that young carers’ services aim to give the young carer a break, and reduce inappropriate and/or excessive caring roles on an ongoing basis.
Some levels of caring responsibility are inappropriate for a child or young person – when their development and wellbeing is affected – and the aim of support should be to change this situation, rather than only providing a limited break from it. This requires a whole-family approach.
In England, the Care Act 2014 highlights in law the importance of a whole-family approach as an effective way to understand and address the needs of an individual in the context of their family. Whole-family working involves understanding and addressing the needs of the family as one. This involves:
- addressing a young carer or young adult carer’s needs within the context of their family, instead of in isolation
- considering the impact the additional needs of an individual who requires care has on the rest of their family.
Evidence shows the benefits of supporting a young carer in the context of their family. By addressing the reasons why a young person is caring and providing support to the person who needs care and the wider family, the role and therefore wellbeing of the young carer can be significantly changed.
The whole-family approach includes:
- whole family assessments
- support for adults and other family members, such as parenting support, provision of practical and emotional support
- building support networks including engaging the wider family through, for example, family group conferences
- relationship building within the family, such as support with building roles, routines and responsibilities and engaging families in positive activities (such as cooking together or a family outing).
- Time away from caring: good practice in carer breaks (Carers Trust, 2023)
Co-production is about developing more equal partnerships between people who use services, carers and professionals.
Co-production in the planning, commissioning and delivery of a young carers’ or young adults carers’ service is about:
- Moving towards young carers and their families having an equal, more meaningful and powerful role in services.
- Young carers, young adult carers and their families being involved in all aspects of a service – the planning, commissioning, development, delivery and evaluation of the service.
- Power and resources being transferred from managers to people who use services and carers.
- Seeing young carers, young adult carers and their families and staff are assets and valued.
- Recognising that if someone makes a contribution they should get something back in exchange.
- Seeing frontline staff as a group that needs to have more independence and a greater role in planning services.
For more information about co-production, see SCIE guidance.
Co-producing services with young carers and young adult carers can result in better services and better outcomes for all involved. This requires meaningful, not tokenistic involvement which influences strategy, planning, design and delivery. Meaningful co-production should be fully resourced, including training and support, and payments where possible.
One of the major challenges for young carer and young adult carer services is lack of engagement by the carer, lack of permission or interest by parents and short-notice cancellation. By involving young people and families in design and delivery, engagement is more likely.
One method for involving young carers and, particularly, young adult carers is the use of mentoring services, where they can work with a volunteer to plan and deliver outings and activities, alongside and in partnership with a transition worker.
Young carers and young adults carers can also co-produce the evaluation of projects and services by deciding what outcomes are meaningful to them. Pre-intervention questionnaires can be used as a way of getting young carer and young adult carers’ input into services and can also be co-produced with young carers, young adult carers and their families.
Questionnaires must be accessible, particularly for those for whom English is not their first language and for those with learning disabilities.
Aims and outcomes
The aims and outcomes of a break or support will be personal to each carer and the person they care for, but may include:
- having more opportunities to enjoy a life outside or alongside the caring role
- feeling better supported
- improved confidence
- increased ability to cope
- reduced social isolation and loneliness e.g. increasing social circles, connections and activities
- increased ability to maintain the caring relationship, reducing the risk of relationship breakdown and crisis
- improved health, wellbeing and quality of life
- staying safe
- enjoying and achieving
- making a positive contribution
- increase participation at school, college or university.
How to meet these aims – lessons learned
Practical hints and tips from existing service providers for young carers and young adult carers are as follows.
The impact of being a young carer can have consequences on their emotional and physical wellbeing and prospects later in life. It is important to ensure there is not a ‘cliff edge’ in support services for them as they become an adult.
Transition is the period from 16 to 24 where a young person transitions from child to adult services. For young adults, this is also a time of transitioning from compulsory education to other options for further education, training and employment. In this time a young adult may transition from being a carer to no longer having caring responsibilities, but the impact of their time as a carer still leaves them vulnerable to emotional and financial difficulties. This period of change therefore involves a great number of ‘transitions’ with which young carers may need support.
Practice examples on supporting transition
- Holiday activities, groups and funding sources for young adult carers (Swindon Carers Centre)
Further and higher education providers can support learners who are former young carers and young adult carers. This support is often limited and inconsistent and is unlikely to include providing breaks. It usually focuses on educational and potentially emotional support. They can be a part of a wider system of support, however.
Helpful support for young carers in transition include:
- transition assessments
- support workers or mentors to help identify needs and support and to be a point of trusted contact
- breaks, both long (residential) and short (clubs and leisure activities) that fit round education, training and employment
- breaks that include sensitive education, training and employment advice with an understanding that young adult carers may not have had the opportunities to explore their strengths and options
- mentoring support that enables them to take increasing levels responsibility for aspects of planning breaks and activities
- emotional support, including counselling or group work
- support systems in place within education and training.
- Students with caring responsibilities (UCAS 2023)
Young carers’ and young adults carers’ views and experiences of services
Young carers describe the difference made by breaks and support as ‘everything’. They overwhelming agree that the support they received through their local carers service was invaluable to them.
Young carers and young adult carers report that they:
value opportunities for trips or leisure activities with other young carers and family members and regular group activities with other young carers, such as youth clubs
value being with other young people with caring roles, who were in similar situations and who ‘understand’ or ‘know’ each other’s background
value having free time to relax
value overnight stays as ‘a residential is enough time way, to calm down, just overnight and it just gave you that chance to get away and relax.’ (Donnellan, 2017)
feel that support can help them to understand themselves better as a person, not just as a carer
found the support helped them cope with other life challenges, not only caring.
Support and breaks can help young carers ‘not to feel all alone, as if they are drowning and as if there is no escape.
Hear from Charlotte, a young person with caring experience. She discusses the difference that breaks for carers can make.
Barriers to providing young carers’ breaks
The key barriers to providing good quality short break services for young carers and young adult carers are:
Lack of support – there is a lack of formal, consistent support, to enable young carers to take a break from their caring responsibilities. For example, there is often no replacement care available on a regular planned basis.
Transport – poor transport to activities is a major barrier to attendance and should be supported as much as possible.
Anxiety – carers of all age groups experience anxiety about leaving the cared for person behind when they have breaks, and this can be a barrier to taking part or to enjoying the break.
Service uptake – it is difficult to engage young carers and young adult carers to participate in activities and breaks.
Parental refusal – sometimes parents refuse to let their children attend activities and breaks from caring.
Medical challenges – young carers and their families often find it difficult to take breaks, often due to the associated medical complexities which contribute to their day-to-day challenges.
Poor engagement with diverse communities – meeting the needs of BAME, LGBTQ+ and disabled young carers requires active engagement and outreach work as they are less likely to come forward for support. Services need culturally appropriate skills to engage effectively.
Cancellations – cancelling at short notice, or even on the day, is quite common.
Post-caring needs – caring roles may end due to improved family situations, or a sibling growing older, but they can end due to death, hospitalisation or moving out of the family home (either for training or education or due to family relationship breakdown). The emotional impact of separation, plus the increased vulnerability of those who have been young carers, means support is often still needed.
Terminology – the label ‘young carer’ is unknown and confusing to many families.
Stigma – young carers do not attend support groups because they are afraid or embarrassed.
Availability of provision – this is limited in some areas and lacking for different age groups.
Age restrictions – means many young people could be excluded from services and activities.
Complex funding – charitable funding from a number of sources is often required to deliver services.
Strategic planning – young carers are often not involved in wider strategic thinking and planning and costs of co-production are not taken into account.
Measuring impact – it can be challenging to demonstrate that support interventions are resulting in improved outcomes for young carers, young adult carers and their families.
It is unclear at this time what the longer term impact of COVID-19 has had on young carers’ breaks. Some young carers may be supporting an adult who was part of the shielding group and so have particular concerns around COVID-19.
It can be difficult to draw direct causal links between the support interventions and improved outcomes for young carers and young adult carers. Potential solutions might include using proxy measures to show changes in the outcomes for young carers. This might be done using impact measurement and assessment tools such as MACA (multidimensional assessment of caring activities) and PANOC (positive and negative outcomes of caring). Such tools can be embedded into assessments and used in practitioners case work as well.
Other assessments tools that could be used with young carers include WEMWBS (Warwick-Edinburgh mental wellbeing scale) and Rosenberg self-esteem scale.
Evaluation tools that are used with young carers should be age appropriate. For example:
- a traffic light system or emoji faces
- My Star, a version of the outcomes star that helps to look at what a child’s life is like and can be used to measure change.
Evidence of tangible, ‘hard’ outcomes, such as a case being stepped down from a child protection plan, or a school exclusion being prevented, should also be incorporated in monitoring and evaluation activities.
As a minimum, services should measure their baseline (or ‘starting point’) for key indicators, so that any future impact (or ‘distance-travelled’) can be measured against these. Ideally, local authorities or services should implement longitudinal (before and after) measures to assess impact.