STIRLING CARERS CENTRE

Research Briefing November 2002

"We all just work together”:

Young People's Perspectives of Caring in the rural Stirling area

A summary report of research by the Department of Applied Social Science, University of Stirling for the PRT Stirling Carers Centre.

The main aim of this project was to provide a better understanding of young people’s caring relationships within the rural Stirling area and of Young Carers’ perspectives on appropriate service provision for their needs.

Recommendations for improving local services

The right of children and young people to care, where it is their informed choice, should not be commandeered or undermined by professionals.

  • As children can start caring at an early age, a more proactive support service to children during their primary school years should be offered.
  • Preventative work with primary school age carers is likely to be more cost-effective than paying for crisis intervention with young people who are carers.
  • Rural Young Carers have confidence in the services provided by the Stirling Carers Centre. Existing capacity within Stirling can be easily built upon to meet rural needs, with appropriate levels of investment, including sustainable transport, a fundamental barrier to participation.
  • Young Carers living in rural Stirling areas suggest that the provision of a Young Carers Group in villages is undesirable. With adequate transport Young Carers would prefer to travel to Stirling for services.

Recommendations for enhancing multi-agency working

  • Schools, particularly primary schools could provide a valuable entry point for awareness raising and the increasing recognition of Young Carers.
  • It is recommended that professional groups consider the practice guidelines produced by the Stirling Carers Centre.
  • A ‘holistic’ approach must be adopted by professionals working with families where caring responsibilities are a major factor.
  • There should be greater liaison between community-based social workers, teachers, health professionals and workers in the voluntary sector in supporting caring relationships in the rural Stirling area
  • The development of a network of the Schools Link people with associated training is recommended in order to fully implement the National Carers Strategy.

This Briefing summarises the findings of the project – a report with fuller analysis of the data is available from the Princess Royal Trust, Stirling Carers Centre.

The Project and Context

Three out of five people living in the UK will have caring responsibilities at some point during their lifetime. Contrary to public policy, there is no generic caring experience and no universal carer in society. People can be a carer at any time in their life. The Princess Royal Trust Stirling Carers Centre uses the following definition of a Young Carer:

A Young Carer is a child or a young person under 18 who is carrying out significant caring tasks and assuming a level of responsibility for another person which would usually be taken on by an adult. Young Carers can be as young as 6 years old and can come from any cultural or social background. Most are caring for a parent.

Young Carers have often been conceptualised as 'adults before their time', teenagers burdened with the care of a (stereotypical) disabled parent and having their schooling and leisure opportunities curtailed. A substantial body of the Young Carers literature has failed to describe the experiences of Young Carers under the age of 11 years old, to acknowledge that young caring is not a 'one way street' within families and that the cared for do not abstain from parenting. The diversity of experiences and availability of other kinds of help, particularly in lower income and rural families is largely ignored in the literature which has mainly concentrated on researching opportunistic samples of Young Carers who are existing service users.

From June 2001-April 2002, researchers at the Department of Applied Social Science, University of Stirling and practitioners at The Princess Royal Trust Stirling Carers Centre were partners in research which aimed to provide a better understanding of young people’s caring relationships within the rural Stirling area and Young Carers’ perspectives on appropriate service provision for their needs. The research study comprised three main parts: 1) A schools survey in the rural Stirling area to discover children and young people's participation in caring in their families; 2) Interviews with Young Carers to explore their use of services targeted at addressing their needs and 3) Liaison with practitioners across the 115 Young Carers projects in the UK to find out about the policies that were in place for rural carers. Parts 1 and 2 are summarised in the next sections.

Young Carers participated in the design and content of the research tools and the study approach taken.

The studies

Surveys of 1 primary school (Years P7) and 2 secondary schools (Years S1) in the rural Stirling area were conducted between June - October 2001. Three hundred and ten young people aged 11-14 years old (156 young men, 145 young women and 9 anonymous young persons) completed the survey questionnaire in the 3 schools. The majority of the group were living with their parents or one of their parents and their partner. This small scale sample cannot be expected to representative of children and young people living in the rural Stirling area, let alone be representative of all children and young people in Scotland and the UK as a whole. The sample does, however, allow an exploration of children's views of rural life from several villages in one locality.

Through local health professionals and voluntary sector workers, interviews drawing on the experiences of six Rural Young Carers and two parents were conducted. To preserve anonymity and confidentiality, the rural Young Carers, three boys and three girls, can be broadly described as living with both parents and siblings where a parent needed extra care from them. They were aged between 10 and 17 years old. The participants in both parts of the research are the drivers of the themes that are presented next.

Caring Relationships in the rural Stirling area

Table 1 describes the self-reported care in the family of the young people who participated in the schools survey. One in five children and young people reported that they looked after someone in their family (21.8%) providing either co-resident care (in the home) or extra-resident care (outside the home). Boys and girls were similar in their self-reported care in the family circumstances (51.3% of the boys reported someone being cared for in the family and in 2 cases themselves, compared to 48.7% of girls who reported that someone was being cared for in the family). Thirteen boys and thirteen girls reported that an adult was cared for in the family outside their family home.

Table 1: Self-reported care in family from Schools Survey

N
No one cared for in family / 241
Participant is cared for at home / 2
Another child or young person is cared for at home / 32
Adult cared for in family home / 7
Adult cared for in family elsewhere / 26

The majority (93%) of the young people aged 11 - 14 years old reported that they did jobs around the home for others. Compared to children and young people who were not carers, Young Carers were significantly more likely to report going to shops, tidying rooms in house, dressing someone else, cleaning someone else, watching siblings, making food for self to eat and making food for others. Regardless of caring situation, similar proportions of children and young people were responsible for washing dishes, doing laundry and ironing and folding clothes. The Young Carers interviewed reported that the tasks associated with caring ranged from domestic chores to very personal intimate care such as bathing or toileting.

The evidence from both the schools survey and the interviews with the Young Carers in the rural Stirling area supports that the likelihood of adopting caring roles was influenced by the family composition, the gender of the person requiring support and the 'availability' of carers within the family. In some cases, gender and age both played a part. As one young carer spoke of their younger sibling: "I think that I should do more because I'm older. . . so I do most of the work at home, my mum does some as well" . Like previous research, our data suggests that girls were more likely to be involved in all aspects of care, especially domestic tasks and personal care. If the female young carer was unavailable for intimate care (of a mother), the hierarchy of care would lead to support from a male member of the family in her absence:"My brother is okay, my dad cares for my mum as well when I'm not there" &"if I am not there, my wee brother knows what to do".

The earliest age of starting caring was reported as 3 years old. The onset of responsibilities within a caring relationship was felt with guilt by parents (who were cared for), as one parent said "I think that its important for kids to realise that they don’t have to do these things for their mum, but if they do it makes it easier for everybody" but generally their caring relationship was felt to be a positive experience for their sons and daughters in terms of developing organisational abilities and maturity at an early age.

This research supports that there are positive aspects of caring and also seeks to draw attention to the reciprocity and interdependence which characterise many caring relationships in this rural study. As one rural young carer stressed "I don't really care for someone I care for them more because they are disabled". The rural carers stressed the interdependence of their activities in the context of helping out the whole family including themselves rather than a notion of helping the 'cared for' person only.

The role of schools

Schools would seem an ideal place where Young Carers could be identified. Our experience from the schools survey is that while primary and secondary school pupils may be willing to disclose their caring relationships on a questionnaire that would be immediately removed from the classroom, they are less likely to disclose their situation to others, or wish for others to intrude upon their private family matters within that setting. As one carer said:"There's another girl at school but I wouldn’t want to go up to her and ask her how's she's doing, I wouldn't want to intrude in her life like that, its not my place and I know that she wouldn't thank me for it".

In many instances, teachers were reported as insensitive at times. Young Carers felt that their confidences to school teachers were often considered 'stories' or 'excuses’. As one Young Carer said: "being a young carer you would never play on it, you would try and meet deadlines -if they don't recognise it they don’t recognise it, is something you have to deal with as well"

Young Carers felt that teachers and schools should have a greater awareness and humility about their exceptional circumstances and how their caring relationships may affect their attendance at school and meeting coursework deadlines at exceptional times:

"I don't think they offer enough support. You have extra to do at home so its possibly harder to meet deadlines and things like that but they never recognise that its always you must get your homework in this day”

"I kinda thought that they must know because its on my records, you know it wouldn’t be a shock to them - its not exactly something I hide so I think they know about it but they are not really considering it in anyway"

None of the Young Carers at the rural schools expressly wanted schools to know of their private matters but were aware that 'facts' were known within the community. A lack of confidentiality and privacy in teacher's practice was a cause for concern.

Generally, Young Carers were positive in their interviews about the strength of support they gained from their friendships, particularly best friends either through schools and from groups they attended out of school, including Young Carers Groups:

"Do things for Mum before I go out is everything OK - have you got everything - then I'll go out and do mainly what my friends do - ok occasionally I miss out on a few things but nothing to moan about I have a pretty good life" .

Young carers’ views on local service provision

Participating in a Young Carers Group

There are more than 100 Princess Royal Trust Carers Centres across the UK, of which about 30 are running Young Carers groups including Stirling. These groups offer support and counselling to Young Carers as well as leisure activities and a break from caring. As one young carer said "Its always fun there, you've got someone to chat to, stuff to do, games to play with".

It is clear that because Young Carers are often ‘invisible’ and the young person may hide the role from others that their needs may be being met in general services without their caring duties being known about.

In the rural Stirling area, doctors and health visitors, who were aware of the caring activities of the young people interviewed, were key workers in assessing the needs for support of Young Carers and suggesting agencies who could provide individual and group support. As one young carer said about a Young Carers group: "the doctor just mentioned it and said you've been worrying about your mum a lot - she just mentioned it to see if I wanted to try it out. I did and I liked it and I've been going since".

Professionals who are unaware of how best to deal effectively with appropriate services for children should not ignore them but seek advice from other agencies to offer services that are available to that child, regardless of their location.

When asked about the benefits of the group for the Young Carers that used the service, the consensus was one of partnership with the workers at the group, and a connection, "we all have something in common", with the other children and young people there, regardless of age and personalities. The activities within the groups were favoured because of their variety and also the opportunity to talk to other Young Carers and workers in confidence, if the person was in need of support.

Barriers to participation in a Young Carers Group

While some rural Young Carers had been assessed and referred to a Young Carers Group in a timely manner, others were unable to go because of barriers associated with transport or caring responsibilities, for example if the young person was the sole carer in the family. Others felt that they had slipped through the net. As one Young Carer spoke of being approached by a Health Visitor, a decade after she started caring for one of her parents: "I think it was all offered a wee bit too late ….You get pass a certain age and you've dealt with it so long there's no point trying to go and analyse it". Secondary school age Young Carers who had not participated in a Young Carers Group perceived them as unappealing: "when you're in high school and you're already settled you don’t want people talking about you then about things like that …. there's no way of getting over that except at a young age".

Other Young Carers were critical of the nature of services that would pressurise Young Carers into talking about their caring relationship: "You have this vision of everyone sitting in a group talking about their experiences". On the other hand, some Young Carers felt that specialist groups offered activities only and this was not needed by them saying"we do do family things" and "I think I get on alright".

The third explanation given for non-participation in a specialist Young Carers Group was that the Young Carers in the rural Stirling area wanted privacy about their caring relationship and genuine 'time out'.

Participation in young people’s groups

In the Schools Survey, over 65% of the 310 young people did not participate in any young people’s groups. These young people regardless of their caring circumstances were united in wanting more services. Participation in young people's group in the rural Stirling area was felt by some Young Carers to be important to counter any adverse effects of visibility and 'gossip' within the village:

"I wouldn’t like the thought of there being a divide and there is a group for Young Carers the rest the others go to them (other groups) you want to mix with everybody”.

Conclusions and implications for service provision

Young Carers living in the rural Stirling area voiced four major points that have implications for local service provision:

  1. Users of a Young Carers Group outside of their villages were extremely satisfied with the service.
  2. There was an unmet service need within the villages.
  3. There needed to be a greater awareness across a range of professionals of the age that children start caring at, on average 3 years old in these studies. Primary school was highlighted as an optimum time for support intervention.
  4. There was a perception that rural schools, both primary and secondary, could be doing more to support Young Carers.

Practice Guidelines and a full report (price £5 plus £2 postage & packing) are available from Moira C Taylor, Centre Manager, PRTStirling Carers Centre,65-69 Barnton Street, Stirling FK8 1HH