"We all just work together":

Young People's Perspectives of Caring

in the Rural Stirling Area

A Research Report

The Princess Royal Trust Stirling Carers Centre

2002

CONTENTS

Acknowledgements / 4
Executive Summary / 5
Chapter One: Introduction
1.1 Carers in the UK
1.2 Young Carers
1.3 Young Carers of Disabled Parents
1.4 The Rural Dimension of Caring
1.5 Aims of the Research

Key points

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Chapter Two: Methodology
2.1 Introduction
2.2Advisory Group
2.3Children and Young People's Participation
2.4Developing the Schools Survey
2.5 The Schools Survey of Children about LifeOutsideSchool
2.6 The Interviews with Young Carers
2.7 Liaison with Practitioners working in Young Carers services
Table 2.1: Characteristics of the Survey Group
Key points / 16
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Chapter Three: Caring Relationships in the Rural Stirling area
3.1 Introduction
3.2 Children's Caring Relationships
3.3 Exploring the Extent of Young Caring
3.4 Expectations of Children and Young People's Home Responsibilities
3.5 Gender and Age of Starting Caring
3.6 Interdependence within the Family
3.7 Visibility within Rural Villages
3.8The Role of Schools
3.9The Role of Friends
3.10 Hassles of being a Young Carer
3.11 Young Caring and Social Exclusion in Rural Areas
Table 3.1 Self-reported Care in the Family
Table 3.2 Comparison of Caring Situation by Socio-demographic factors
Table 3.3 Participation in Jobs around the Home by Caring circumstances
Table 3.4 Self-reported Age first started helping out around the Home by Caring circumstances
Table 3.5 Self-reported effects on School Participation
Table 3.6 About Friendship Out of School
Table 3.7 About Best Friends
Key points / 23
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Chapter Four: Providing Services for Rural Young Carers
4.1 Introduction
4.2 Specialist Services for Young Carers
4.3 Moving Forward in Practice
4.4 Moving Forward in Rural Areas
4.5 Professional liaison with Young Carers
4.6 Referring Young Carers to Group Support
4.7 Participating in a Young Carers Group
4.8 Choosing not to Participate in a Young Carers Group
4.9 Young Carers' Participation in Young People's Groups
4.10 Implications for Service Provision
4.11 Limitations of the Research Study
Table 4.1 Participation in young people's groups
Table 4.2 Demand for local young people's support group
Key points
Chapter Five: Recommendations
References / 52
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TOGETHER, We Can Work to Support Young Carers / 82

ACKNOWLEDGEMENTS

This research report and practice guidelines are based upon a collaborative project between researchers at the Department of Applied Social Science and workers at The Princess Royal Trust Stirling Carers Centre. The project team give thanks to the Management Board of Directors for commissioning the project, The Princess Royal Trust Stirling Carers Centre and members of the project advisory group Margaret Perry, Moira Taylor and Walter Wood for their valuable co-ordination of the studies.

Special thanks are given to all the children and young people who gave up their time: the Stirling Young Carers Group for their collaboration in designing the questionnaire, the pupils at the three schools who agreed to participate in the Schools survey and the Young Carers who were interviewed. Without the children and young people sharing with the researchers what were sometimes difficult to discuss and painful experiences, these findings would not have been possible. Thanks are also given to the Stirling Council Children’s Services, all the headteachers and staff who wholeheartedly supported the project and allowed the team survey time within the school curriculum and the health visitors who gave their support.

Thanks are given to the project managers and workers with Young Carers for their interest, time and provision of materials: Sandra Bilsborrow of Barnardo’s Action with Young Carers Bolton, Janet Brown of The Princess Royal Trust Carers Centre Reading, Workers at Colchester Carers Centre for Children Essex, Jeremy Coombe of The Children’s Society, The Young Carers Initiative Twyford, Linda Grimmond of NCH Thetford Family Centre Thetford, Rob Harrison of Crossroads Caring for Carers Centre 33 Cambridge, Andrew Lake of Mountfields Lodge Youth Centre Loughborough, Cathy McNicholas of The Tim Parry Johnathan Ball Young People’s Centre Warrington, Val Owen of West Lancashire Young Carers Group Ormskirk, Connie Rees of Stevenage Young Carers Stevenage, Tim Ruscoe of Barnardo’s Flintshire Young Carers Holywell, Jenny Slater of The Princess Royal Trust Carers Centre Aberdeen, Cath Thomas of Norwich and District Carers Forum Norwich, Sally Thomas of Herefordshire Young Carers Hereford, Nicki Thompson of Barnardo’s Carefree Young Carers Project Leicester, Jackie Ticehurst of Barnardo’s Bristol Young Carers Scheme Bristol, Michele Wates of Disabled Parents Network, Tessa Weir-Jeffery of NCH Somerset Young Carers Project Taunton and Gwyneth Williams of Kingston Carers’ Network, Kingston-upon-Thames. Without their help, the review of services could not have been possible

The team of researchers and practitioners who conducted the studies are, in alphabetical order, Kathlene Beaton (interviewer), Susan Eley (lead researcher), Lesley Hudson (schools survey fieldworker), Ilona Kirk (practitioner & schools survey fieldworker) and Geraldine Lee-Treweek (lead researcher). Moira Taylor, Manager of Stirling Carers Centre developed the practice guidelines.

Executive Summary

Previous research and practice highlights that:

  • Three out of five people living in the UK will have caring responsibilities at some point during their lifetime.
  • People can be a carer at any time in their life.
  • There is no universally accepted definition of what constitutes 'providing care'.
  • Many definitions applied to young carers are relative and assume that they are undertaking physical and emotional tasks that either other children and young people of their age do not do for their family members or that no child or young person should be doing at their age and circumstances.
  • The interdependence of disabled people as parents and their sons and daughters as carers has been rarely considered in the caring literature.
  • Concerning rural carers, there has been little consideration of the practical and the personal barriers to seeking support in areas where carers may remain 'hidden' to services but highly visible to community members who may or may not offer support to meet needs.

The remit of the current research was:

  • To survey children and young people living in two broad rural areas of Stirlingshire with the objective of identifying young carers.
  • To examine the dynamics of young caring in rural areas of Stirlingshire.
  • To promote current good practice with young carers in rural areas in the UK.
  • To identify issues in and means of service provision to rural young carers, as they themselves perceive them.
  • To provide guidance materials on rural young carers for future use.

The research study comprised three main parts:

  • Part 1: A schools survey in the rural Stirling area to discover children and young people's participation in caring in their families;
  • Part 2: Interviews with young carers to explore their use of services targeted at addressing their needs;
  • Part 3: Liaison with practitioners across 115 Young Carers Groups in the UK to find out about policies that were in place for rural carers.

The key points concerning Caring Relationships that emerged from the current research are:

  • There has been little consideration of the rural dimension of young caring.
  • The Caring Relationships of seven rural young carers are presented as case studies.
  • Of the 310 girls and boys surveyed in the rural schools, 22.3% reported that they are a Young Carer and 17.4% were 'hidden' carers.
  • There were no significant gender differences in who cared.
  • There were no significant differences in the family structure of young carers compared to other children living in the same locality.
  • In the rural schools survey, the majority (93%) of the young people aged 11-14 years old reported that they did jobs around the home for others.
  • The tasks associated with caring ranged from domestic chores to very personal intimate care.
  • The earliest age of first starting helping out around the home was given as 3 by young carers.
  • There are positive aspects of caring and a reciprocity and inter-dependence which characterises many caring relationships in this rural study.
  • Living in a rural village was felt by the young carers and their parents to have benefits and particular challenges to their caring relationships.
  • Schools would seem an ideal place where young carers could be identified.
  • 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.
  • Young Carers were positive about the strength of support they gained from their friendships.
  • None of the rural Young Carers interviewed directly reported that they had experienced bullying (verbal, physical or emotional abuse or intimidation).

Concerning the provision of services for Young Carers in the rural Stirling area:

  • It was found that doctors and health visitors, who were aware of the caring activities of the young people interviewed, were key workers in assessing the need for support in the Young Carers and suggesting agencies who could provide individual and group support.
  • 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 offering services that are available to children, regardless of their location.

In conclusion, there were four major points for service provision for rural young carers:

  1. Rural young carers who were already engaged with a Young Carers Group outside of their villages were extremely satisfied with the group and would recommend it to others like them.
  2. There was an unmet service need within the rural Stirling area.
  3. Young Carers felt that there needed to be a greater awareness across a range of professionals of the age that children start caring at. Primary school was highlighted as an optimum time for individual and group support intervention.
  4. There was a perception that rural schools, both primary and secondary schools could be doing more to support Young Carers.

The following recommendations were initiated from the research findings and were then elaborated by the Advisory Group in the light of their experience.

Improving Local Services

  1. The right of children and young people to care, where it is their informed choice, should not be commandeered or undermined by professionals. Professionals must recognise, value and respect the interdependent and reciprocal nature of caring relationships and support these relationships. Each family must be considered and treated as unique, in a manner that is sensitive to the visibility of their circumstances within the local rural community.
  1. As children can start caring at an early age, a more proactive support service to children during their primary schools years should be offered.
  1. Investment into trained children’s workers who could provide preventative one-to-one counselling and groupwork with primary school age carers is likely to be more cost-effective than paying for crisis intervention with young people who are carers.
  1. Further investment into the voluntary sector could extend existing services to provide greater ‘child-centred’ provision based on the developmental age of service users.
  1. Rural Young Carers have confidence in the services provided by The Stirling Carers Centre. Listening to the voices of 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. Existing capacity within Stirling can be easily built upon to meet rural needs, with appropriate levels of investment, by resourcing two age-specific groups, weekly (rather than fortnightly) group meetings, one-to-one counselling and sustainable transport (a fundamental barrier) from the rural Stirling area to a Stirling based group.

Enhancing Multi-agency Working

  1. Recognising and reviewing the needs of young carers is vital to meet ‘needs’ and to protect children ‘at risk’. Caring can silence children and professionals must be diligent, responsive and sensitive to young carers when responding to their particular needs. Rural young carers want the order of their lives - and information - respected within the local community. Schools, particularly primary schools could be a valuable entry point for awareness raising and increasing recognition of young carers.
  1. Awareness-raising about young carers must be continual and must go beyond health, social care and social work agencies to include education, youth services and nursery staff. It is recommended that professional groups consider the practice produced by the Stirling Carers Centre.
  1. While practical concerns are more easily addressed because they are more visible and easily addressed in the long term, the emotional rollercoaster of caring can remain. A ‘holistic’ approach must be adopted by professionals working with families where caring responsibilities are a major factor.
  1. 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. Professionals can support these relationships by referring children and young people to other agencies. There needs to be a greater recognition across local statutory agencies of the quality of the services provided by the Stirling Carers Centre and a broader awareness of the added value of the voluntary sector to existing services.

Schools are a major part of all children and young people’s lives. The National Strategy for Carers in Scotland encourages that there is a Link person within each school that will hold the responsibility for awareness raising about Young Carers. The development of a network of these Link people with associated training is recommended in order to fully implement the policy.

Chapter One: Introduction

1.1 Carers in the UK

Three out of five people living in the UK will have caring responsibilities at some point during their lifetime. Some people may experience being a carer more than once. Contrary to public policy, there is no generic caring experience and no universal carer in society. The diversity of the people who bear the costs (in terms of direct costs and opportunity costs) of personal caring is becoming increasingly less obscured. Carers include younger carers under age 11 to older carers, women and men, those from minority ethnic groups and those living in rural areas. A critical review of the literature concerning diversity among carers has been published elsewhere (Eley 2002). People can be a carer at any time in their life. Generally the research literature has struggled with the realities of the diversity of caring experiences of carers and care-recipients in relation to age. The following section highlights the literature within the broad category of young carers.

1.2 Young Carers

Becker et al. (1998) describe young carers as ‘young people under 18 who provide care to another family member with a physical illness or disability, mental ill health, a sensory disability, who misuses alcohol or drugs or who is frail’. From UK government surveys, it has been estimated that between 0.27% and 0.72% in the 8-17 age group are providing substantial or regular care i.e. more than 20 hours per week[1]. However, there is no universally accepted definition of what constitutes ‘providing care’. There is widespread agreement that involvement in particular forms and levels of caring can have a restrictive or negative impact on childhood. There is concern about children who take on responsibility for meeting ‘critical’ needs i.e. where the person needs help with unexpected and unpredictable frequency, as well as those who are providing regular care. Whatever the level or nature of the care provided, researchers argue that it is the impact of caring on the child's development and opportunities which determines the need for support. The range of needs identified in qualitative research includes social, emotional, educational and health needs.

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 (Wates 2000).

There are problems with estimating numbers of young carers (under 18 years) and younger carers (aged between 18-25 years) partly because of the 'private' nature of caring activity at home and partly because of assumptions about 'caring' activities. Many definitions applied to young and younger carers are relative and assume that they are undertaking physical and emotional tasks that either other children and young people of their age do not do for their family members or that no child or young person should be doing at their age and circumstances. 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.

1.3 Young Carers of Disabled Parents

The dominant research literature on the 'plight' of young carers and the long-term impact on their lives (for example Aldridge and Becker 1993, Aldridge and Becker 1996, Becker, Aldridge and Dearden 1998, Dearden and Becker 2000, Heron 1998) maintains its influence over the policy agenda. This substantial body of evidence fails to appreciate the complex and diverse reciprocal caring relationships among families (Morris 1997, Olsen 1996) and its rhetoric contributes to the low take up of support services. The Social Services Inspectorate report found in cases of young carers of disabled parents in all of the councils visited, some people did not wish to be referred to social workers, because they were scared that there would be a difference of opinion about caring activities undertaken by children and young people and concerned that their children would be taken away into residential or foster care. (Goodinge 2000). The inspection teams also reported that childcare teams in social services departments did not necessarily record that parents had a disability and adult service teams did not routinely record whether there were children in the family (Goodinge 2000).