4. THE EFFECTS OF CARING ON YOUNG CARERS
4.1 Many children and young people who provide unpaid care are not identified as young carers. By developing their understanding of the effects of caring, all professionals and agencies working with young people will be better able to identify young carers, understand their circumstances and behaviours and intervene earlier and in a supportive way.
The Positive Effects of Caring
4.2 Contributing to the care of a family member or friend with a disability or illness can be a positive experience for a young person. It can be an expression of commitment and affection, which can serve to strengthen the relationship between the young person providing the care and the person receiving the care.
4.3 By making an important and positive contribution to family life, the young carer can feel more valued and included. The caring role can give young carers a sense of responsibility and identity, and can build self-confidence and esteem.
4.4 Providing care can also enable a young person to develop personally and to gain life skills. For example, as a result of the contribution they make and the responsibilities they take on, young carers can achieve greater maturity and resilience, can develop problem-solving and coping skills and can become more independent. Caring can also enhance practical skills in managing money, maintaining a home, providing child care, organising appointments and liaising with professionals.
"Being a young carer means I can make sure my mum's ok, and I can feel proud of myself for ensuring she's safe and stable. You get to feel proud and like you're really making a difference to someone in a good way. You learn skills about how to be independent and be able to function when I move out. We are more understanding and accepting of the problems faced by others."
Rachel B, 17 years
The Negative Effects
4.5 While many young people will benefit from making a caring contribution, this strategy is primarily about those for whom caring has a potentially negative and detrimental effect.
4.6 When young people are required to take on too many caring responsibilities, or carry out caring roles that are not appropriate, this can have a limiting and adverse effect on their health, well-being, safety and development.
4.7 As some domestic, personal and child care tasks have traditionally fallen to women there may be a greater likelihood of girls being required to take on these roles, rather than their male siblings. Despite progress in gender equality issues, families and indeed some professionals may make assumptions that young female carers will forsake further education and future employment to continue to provide unpaid care.
4.8 Other factors can also compound the effects of caring. For example: in lone parent families there may be greater pressure on young carers; in rural and remote areas there may be greater isolation and limited access to services; in poorer families it will be harder to meet day to day needs, in particular, any special needs; and in BME communities there may be cultural and language barriers to overcome before support can be accessed.
4.9 While all young carers will deal differently with the challenges and pressures they face, some possible effects of caring are summarised below.
4.10 Providing care for a relative with a disability, illness or substance misuse problem can place demands on a young carer that affect their education. This can include problems with attendance, being late for school, not being able to do homework and difficulty concentrating in class. This, in turn, can limit the young person's achievement, motivation, ambition and progress towards fulfilling their full potential.
"Sometimes I sleep on the couch in my sister's room to give mum and dad a break. It's hard to sleep because I'm afraid she'll stop breathing. It's hard to cope with school the next day cause I'm shattered"
Amy, 12 years
"I miss a lot of school time because I am tired as I may have been up helping my mum with her tablets during the night"
Roberta, 10 years
4.11 Dearden and Becker 15 found that 27% of all young carers in secondary school and 13% in primary school experienced some educational problems. This increased to 40% when the young person was caring for someone with a substance misuse problem.
4.12 Young carers have highlighted the importance of schools, which can provide some sanctuary from the demands they are facing at home. They describe benefitting from positive relationships with teachers and school staff, who respond in a sensitive way to their caring role and provide support to meet their needs. The introduction of Curriculum for Excellence will enhance this.
"In my school they did understand my situation, because I talked to my guidance teacher. After that they helped me and my brothers to get transport to go and see my mum in hospital. My registration teacher was the best."
Scottish Young Carers Festival 2009
"Sometimes teachers can help a lot as they know you are a young carer and they can help you to catch up with your work, but sometimes they do not know you are a young carer and I do not like to tell anyone as they sometimes think you are strange."
Catriona, 13 years
4.13 Caring for a relative with a disability, illness or substance misuse problem can be onerous and can have a cumulative and adverse affect on a young carer's physical health. The demands of carrying out moving and handling procedures can, over time, cause neck and back problems and affect a young carer's physical development.
4.14 Having to take on responsibilities that would normally fall to an adult - like providing intimate care, managing a home, or undertaking child care - can lead to a young person experiencing mental health difficulties such as depression and stress. In her research into 61 Edinburgh young carers, Cree 16 found that 67% worried about their own health, 60% had problems sleeping and 30% problems eating and, most worryingly, over 30% had self-harmed or had had suicidal thoughts.
4.15 If a young carer is living in a family where a parent misuses alcohol or drugs, they may lack positive parental support and guidance and may have to fend for themselves, to self-care. This may result in a poor diet, health and hygiene or the young person missing immunisations, health checks and dental appointments, to the detriment of their own health and development. Young people in this situation may also be exposed to criminality and to risks to their safety from unknown adults visiting their home.
4.16 In some situations, for instance, caring for a parent with a mental health or substance misuse problem, with a brain injury or with Huntington's disease, a young carer may be exposed to challenging, unpredictable behaviour, with threats of, or actual violence. These young people may already be socially isolated, due to the stigma associated with the illness.
4.17 The demands of caring can limit young carers' free time and their opportunities to enjoy social contact and friendships. The need to be at home to provide care can curtail their ability to join their peers at clubs and groups, after school, in the evening and at weekends. A family member's disability, illness or addiction may also make them reluctant to bring friends home. These factors can combine to isolate and marginalise young carers, to make them feel "different" and to cause others to question or ridicule them for not fitting in.
"'I cannot go out and play with friends because I have to help my Dad and my little brother who has autism and he is not able to tell my Dad what is wrong."David, 14 years
4.18 Missing out on opportunities and being denied aspects of their childhood can have an adverse affect on young carers' psychological and emotional well-being. Seen as "different" from their peers, who don't understand what they are dealing with at home and why they can't join in activities, young carers can also experience bullying. This can result in confrontation, further isolation and exclusion, it can damage their self-image and it can cause them to be more secretive about their home life.
"You can't really tell people about your home life, it's kind of a "taboo" subject. Most of us don't receive help until we're at breaking point. I don't get to see my friends as much as I'd like to, and have to make really bad excuses why I'm upset or can't go out. Plus I'm more tied to what I can do and where I can go for my own life."
Rachel B, 17 years
4.19 Many young carers live with constant anxiety about the health or prognosis of the person they are caring for.
4.20 In addition, when caring for someone with mental health difficulties, HIV/ AIDS or Huntington's Disease the young carer may be dealing with the associated stigma, as well as with fear and uncertainty about the possible implications for their own future health.
"I want to know if I'm going to get epilepsy. My mum has lost teeth and has bruises all over from when she falls. No one can tell me if I will. I just try not to think about it all the time, but it's hard."
Katie, 12 years4.21 For some young carers the sudden onset of caring can affect previous relationships and can impact on their feelings of security. It can require them to assume new roles and responsibilities without warning or preparation, resulting in feelings of powerlessness, anger and resentment.
4.22 If the person that they are caring for dies, the young carer will have to deal with feelings of loss and bereavement as well as often significantly changed circumstances such as having to move home and school. Like many other transitions, the transition to no longer being a young carer can have a significant impact on a young person's psychological well-being and future development.
"When my dad died I lost my home, my routine, my way of doing things and my important role in the family."
Erin, 13 years
"My dad was the main carer for my mum, even though he didn't keep well himself. He died suddenly and I became the main carer for her. She suffers from epilepsy and depression....I was coming up for 17 and studying for my highers ....I was under enormous pressure. I was at my wits end and felt like I was drowning under all the pressure."
Caitlin, 17 years
4.23 In her study of young carers being supported by Edinburgh Young Carers Project, Armstrong's 17 findings were consistent with those of other studies, that "the majority experience economic deprivation."
4.24 Young carers are more likely to be living in poverty because they live with a disabled adult who is less likely to be working and more likely to be relying on benefits. Similarly, if a young carer has a sibling with a disability, their parent(s) may have had to give up work to provide care to the disabled child, resulting in a drop in income. Further, the effects of the disability can also bring additional costs, in terms of heating the home, purchasing equipment or maintaining a special diet.
4.25 In families where parents are misusing drugs or alcohol, young carers are likely to face significant financial challenges. This may result in their most basic needs not being met, as well as denying them opportunities to participate in activities with friends.
4.26 Young adult carers can also experience financial hardship in their own right, as a result of the commitment they make to providing care to a relative.
"My problem is that I had to drop out of 5 th year at school to look after my mother. I get no benefits as I am under 18 so I am not entitled to Carer's Allowance or Income Support as I still live with my mother and they say I am her dependent. But if I moved out and stopped caring for my mum, I would be able to claim benefits and rent too and also she would need a lot more support from outside. So by carrying on caring I am saving the government a lot of money, but I don't feel supported."
Andy, 17 years
Neglect and Abuse
4.27 In some situations young carers will be highly vulnerable to the risk of abuse or neglect. Armstrong18found that young carers were 7 times more likely than their peers to be referred for child protection measures. She identified the similarity between many young carers' circumstances and the factors known to indicate a greater risk of child abuse. She cites these as when the young carer:
- lives with a parent with a drug or alcohol problem
- has a lack of social support
- lives with a lone parent
- experiences social isolation and a lack of a confidant
- experiences stressful life events
- experiences problems with finance, housing and a family member's health.
4.28 In the absence of consistent parental care, some young carers affected by parental substance misuse may have to look after themselves or their siblings.
"Everything was fine when my mum wasn't drinking, but when she got drunk it could be for weeks at a time. My brother had to steal money out of her purse to get us something to eat out of the chippy. We were only weans, but we couldn't tell anybody case we got taken into care."
Stephen, 12 years