Young carers: review of research and data

3. Young carers' health and wellbeing

This chapter considers the physical and mental health and well-being of young carers drawing on the Census data on self-reported health and the wider research evidence. The data shows being a young carer tends to be associated with poorer health.

Key points:

• More young carers have worse self-reported health than non-carers and fewer have 'very good health'.
• A long term health condition or disability is more common amongst young carers and young adult carers. It is unknown if and how this may be related to their caring role.
• Tiredness and feeling 'run-down' is a physical impact that many young carers have reported in various studies.
• There is a high prevalence of young carers reporting physical disorders such as hair loss and asthma.
• Young carers and young adult carers are twice as likely as young people generally to report a mental health condition (2011 Census).
• There is considerable evidence to say that young carers are more likely to suffer from anxiety, stress and depression.
• Young carers who are female appear to have comparatively worse mental health compared to male young carers.
• Young carers may find it harder to participate in social activities which may contribute towards feelings of isolation.
• Studies have also shown that young people often find benefit in their care-giving experience.

3.1 Physical health

Overall, more young carers have worse self-reported health than non-carers and fewer have "very good" health. Figure 9 shows that health appears to get progressively worse depending on how much care a person provides. 97% of non-carers aged 4 to 24 were in "very good or good health", compared with 94% of those caring for 1-19 hours, 91% of those caring for 20-34 hours and 89% for those caring for 35+ hours per week.

Figure 9: Self-reported Health Status of people aged 4 to 24, by hours of care provided

Deprivation is associated with both poorer health, and with increased likelihood of providing care. It is difficult to understand the extent to which these different factors separately or together contribute to poorer health outcomes for young carers.

Census data shows young carers are more likely to have a long-term condition or disability. It is unknown from the Census data if and how this may be related to their caring role.

Figure 10: Young carers and non-carers, proportion whose activities are limited by a long-term health condition or disability

Evidence shows that young carers are at a higher risk of poor physical health. The Children's Society (2013, p. 5) found that young carers are 1.5 times more likely than their peers to have a disability or special educational need.

In a study that compared non-carers and carers aged 10 and 11 in Northern Ireland, Lloyd (2013, p. 74) found that the child carers had poorer health, when compared to their peers who were non-carers. Health was assessed using the 'KIDSCREEN-10' tool, where the children answered health related questions in a survey format. It was found that child carers were less likely to describe their general health as 'excellent' compared to their peers.

Tiredness and feeling 'run-down' is a physical impact that many young carers have reported in various studies (Banks, et al., 2001, p. 805) (Banks, et al., 2002, p. 239) (Hamilton & Adamson, 2013, p. 110) (Gates & Lackey, 1998, p. 13). This has consequences for many areas of a young person's life, most notably health and wellbeing, school performance, and participation in leisure activities.

In the Dearden and Becker (1998) study, they found a high prevalence of young people reporting physical disorders such as hair loss and asthma. Similarly, Frank et al. (1999, p. 14) found that 'psychological asthma' and hair loss was experienced by participants in their sample. At the Scottish Young Carers Festival in 2012 around one in 5 of the young carers in attendance reported that they had asthma, which is much higher rates than in the general population in Scotland. ^[9] Studies show that asthma is a stress-related condition where distressing experiences in a child's life can trigger asthma attacks (Sandberg, et al., 2000, p. 982).

Particularly in relation to young people caring for an adult with physical disabilities, it has been suggested that there is likely to be an increased risk of physical injury due to lifting and handling procedures (Sahoo & Suar, 2010, p. 142) (Frank, et al., 1999, p. 15). In relation to adults, it has been shown that the emotional stress associated with care giving may also increase the likelihood of physical illness (Brown, et al., 2009, p. 489).

3.2 Mental Well-being

According the 2011 Census, young carers and young adult carers are twice as likely as young people generally to report a mental health condition: 3.7% of young carers compared to 1.4% young people without caring responsibilities.

Figure 11: % of young people with a mental health condition - carers v non-carers

Figure 12: % of people aged 4-24 with a mental health condition - male and female carers v non-carers

There is considerable evidence to say that young carers are more likely to suffer from anxiety, stress and depression (Cree, 2003, p. 301) (Lloyd, 2013, p. 67).

The study carried out by Lloyd (2013, p. 67) compared the mental wellbeing of child carers and child non-carers. Lloyd (2013, p. 77) found that children who are carers (aged 10 and 11) have poorer wellbeing and feel less happiness in their life overall when compared to children who are not carers. There is also a wealth of anecdotal qualitative evidence in relation to young carers and mental wellbeing. A selection of these studies reported that young carers in their samples had sleeping problems (Cree, 2003, p. 305), worry about 'being different' compared to other children (Roche & Tucker, 2003, p. 444), anxiety surrounding their parent's condition (Thomas, et al., 2003, p. 41), depression (Broadbent, 1999, p. 2), self-harming behaviours (Cree, 2003, p. 305), and also confidence and self-esteem problems (Roche & Tucker, 2003, p. 445).

Figure 13: % of young people with a mental health condition - by hours of care provided

Research carried out in Scotland by Cree (2003) focused on the 'problems and worries' of young carers. The study involved a questionnaire completed by 61 children and young people, and an additional 11 interviews were carried out with children who had nominated themselves in the questionnaire to meet the researcher. Cree (2003, p. 305) found that around two thirds reported difficulties sleeping, as well as a third of participants saying that they had self-harmed and also contemplated suicide.

More female than male young people and young carers report mental ill health. Three possible explanations have been suggested as to why young female carers appear to have comparatively worse mental health compared to male young carers:

• Females tend to be more willing to share about their feelings and experiences (Cree, 2003, p. 306). It is possible that young women are more likely to report a mental health condition and the impact on young men is under represented.
• Young females are taking on more care than young males, due to gendered societal assumptions (Eley, 2004, p. 66)
• Due to psychological reasons i.e. adolescent females in the general population are more likely to suffer from mental health problems compared to adolescent males ^[10] (Abraham & Aldridge, 2010).

In the Cree study (2003, p. 306), it was found that female young carers were more likely to report problems and worries compared to male young carers, bringing Cree (2003, p. 306) to suppose that "there may be additional gender issues in caring which make it possible that the experience of being a young carer is more troublesome for girls than for boys." Girls were more likely to report problems and worries in all of the categories used by Cree (2003, p. 306) compared to boys, apart from 'getting into trouble with the police.' The most significant of these are:

• Falling out with friends (around three quarters of girls in the study compared to half of boys)
• Not having friends (nearly two-thirds of the girls compared to a fifth of the boys)
• Self-harming behaviour - past or present (half of the girls compared to a fifth of the boys)
• Think about suicide - past or present (half of the girls compared to a quarter of the boys)

3.3 Young caring and relationships

Studies have found that the nature of young people's social and familial relationships can be affected by their caring role. Young people caring for siblings can have important differences in their experiences and needs, compared to, for example, young people caring for a parent (Hamilton & Adamson, 2013, p. 112). Evidence suggests that the majority of people with care needs looked after by children and young people are mothers (Dearden & Becker, 2004, p. 3) (Commission for Rural Communities, 2010) (Abraham & Aldridge, 2010). This is particularly the case in lone parent families, where in 70% of lone parent families where a child or young person had a caring role this was for their mother. In two parent families, nearly half of this group (46%) were caring for a sibling (Dearden & Becker, 2004, p. 3). Some young people also care for more than one person. In the Dearden and Becker (2004, p. 3) study, it was found that 1 in 10 care for more than one person.

Roche and Tucker (2003, p. 444) found that young carers found it difficult to be spontaneous and participate in social activities with friends, because they had to attend to the needs of the cared-for person. Young carers can be reluctant to invite friends home and this can be a barrier to developing close relationships with peers (Banks, et al., 2001, p. 801). Young carers are also less able or willing to participate in social and leisure activities and report difficulties in attending activities such as youth clubs, sports participation, music groups, brownies, guides or other groups for many reasons including:

• Needing to help at home
• Financial problems
• Problems with transport
• Tiredness

This can contribute towards feelings of isolation, fewer social skills and means that young carers may find it more difficult to make and sustain peer relationships (Warren, 2007, p. 142).

3.4 Understanding young carers' experiences

Positive impacts from providing care are much less explored compared to negative impacts but studies have shown that children and young people often find benefit in their caregiving experience in terms of the experiences and skills developed, including interpersonal ones. Young carers often feel happy to perform their caregiving duties (Eley, 2004, p. 71), and feel that they are gaining practical life skills (Thomas, et al., 2003, p. 41). Others don't identify as being a 'young carer', feeling like there is nothing particularly exceptional or unusual about their role (Smyth, et al., 2011, p. 147).

Positive impacts include: a closer bond between the young carer and cared for person (Aldridge, 2006, p. 83); a sense of satisfaction (Banks, et al., 2002, p. 243); and the feeling that they have an important role within the family unit (Early, et al., 2006). There is also evidence which points towards resilience factors associated with the caring role. For example (Pakenham, et al., 2007, p. 709) found that young carers who reported high levels of social support reported positive impacts associated with their caregiving. Likewise, Cassidy et al (2014, p. 616) suggest that positive experiences of caregiving appear to be associated with availability of family support and recognition of the child or young person's caring role.

Some authors have called for a more nuanced approach in research in order to recognise the likelihood that children and young people are likely to feel ambivalent with regard to their caring roles, experiencing a mix of both positive and negative impacts over time (Heyman & Heyman, 2013, p. 561) (Cassidy, et al., 2014, p. 606).
The reality is that for many young people the problems they face and the impacts that they experience are multi-faceted. The majority of young carers live in supportive family units and receive the levels of support that any child would expect to receive from their parents; yet their lives and experiences are markedly different which can bring challenges. Banks et al (2001, p. 801) note that labelling children and young people as a 'young carer' can result in representing 'only one aspect of a child's identity, yet is often used as a total characterisation, obscuring other salient aspects such as social class, gender and ethnicity.' This highlights the importance of carrying out research which takes into account the many different variables at play in young people's lives. One study (Moore, et al., 2011, p. 171) highlighted that:

"The most stark finding for us on the nature and impact of the young people's caring role was that it was bound by the many intricacies and complexities of their family life that could only be understood when considered alongside a range of other significant and inter-related stressors affecting these young people and their families such as poverty, mental-health issues, conflict, violence and family separation."

Pakenham (2007, p. 722) and others have identified a need for evidence which would generate more nuanced understandings of young carers in different circumstances. This is important for ensuring that the required support is provided ^[11] .

3.5 Conclusion

The key issue emerging from the research and data is that young carers tend to have worse health and well-being than young people who do not have caring responsibilities. This is true for self-reported health, long term health conditions or disabilities and mental health conditions. This is likely to have implications for other aspects of their life such as education and employment.

It is not possible to tell to what extent this is directly related to the caring role and it is not only those providing the most hours of care who have the worst reported physical and mental health. Other factors such as deprivation, gender, perceived stigma and lack of support may also have an influence. Whatever various factors are at play, young carers need support to ensure that their own health needs are not overlooked.

Research suggests that young carers face challenges in participating in social or leisure activities and may feel isolated as a result. However, it is also important to note that young carers can be positive about their caring role and feel that it brings benefits. As one Scottish young carer said:

"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." (Scottish Government and COSLA, 2010, p.7).