Young Carers: Conventional or Exaggerated Levels of Involvement in Domestic and Caring Tasks?

Historically, research about young carers has focused on defining the tasks and responsibilities undertaken by children caring for ill or disabled family members and the impacts of such care, without reference to the domestic and caring work undertaken by children and young people in families where there are only non‐disabled or well members. This study presents new evidence of what children and young people generally do to assist in the home and examines how the lives of young carers differ from children and young people who are not carers. It concludes by examining the implications of these research findings for evidence‐informed policy and practice. Copyright © 2006 The Author(s). Journal compilation © 2006 National Children's Bureau.     

A cross-national and comparative classification of in-country awareness and policy responses to ‘young carers’

The reality for many families where there is chronic illness, mental health problems, disability, alcohol or substance misuse is that children under the age of 18 are involved in caring. Many of these children – known as ‘young carers’ – will be providing regular and significant care, either episodically or over many years, often ‘hidden’ to health, social care and other welfare professionals and services. These children have most often been invisible in social policy and professional practice. What are the reasons why some countries recognize young carers as a priority for social policy while others (most) do not? What are the key factors that influence a country’s awareness and responses to these children? This article provides an original classification and analysis of country-level responses to young carers, drawing on published research, grey literature, policy documents and the authors’ extensive engagement in policy and practice networks for young carers and their families in a wide range of countries. The analysis identifies two of the key factors that influence the extent and nature of these policy responses, focusing on the importance of a reliable in-country research base and the contribution of influential national NGOs and their networks.     

Families under the microscope: parallels between the young carers debate of the 1990s and the transformation of childhood in the late nineteenth century

Existing analysis and discussion about young carers—children caring for ill or disabled family members—has been limited in scope, concentrating on narrow policy and service issues. In this paper, I attempt to introduce a more historical perspective to these debates, by comparing responses to the issue of young caring in the 1990s to resistance encountered in the implementation of child labour and education reforms towards the end of the nineteenth century. I discuss the parallel ways in which the quality of childhood for some children became problematised without sufficient recognition of the limited choices that some families face. Copyright © 2000 John Wiley & Sons, Ltd.     

WORKING CARERS OF OLDER ADULTS

Juggling work and care presents particular challenges to carers and employers. Employers are increasingly under pressure, both from within organizations and from recent government legislation and policy, to develop family-friendly policies to support informal carers in the workplace. Yet existing ‘family-friendly’ schemes and services are still primarily designed for working parents of young children and rarely address the needs of employees who care for older or disabled adults. This paper reports on a study which investigated how working carers and managers in two public sector organizations — a Social Services Department (SSD) and a National Health Service (NHS) Trust — combined their work and caring responsibilities. A multi-method approach was adopted consisting of five phases. First, a profile of the two organizations was established, followed by a short screening questionnaire to all employees to identify who was caring for an older adult over the age of 60. Third, a lengthier postal survey was sent to the 365 carers who had indicated a willingness to participate further. In the fourth and fifth phases, carers and managers were interviewed in depth about their experiences. This paper reports briefly on the survey, but then concentrates in particular on what was said in the interviews about what helps and hinders working carers of older adults. Despite the existence of policies to support carers, our findings suggest that these were far less important than informal support from colleagues and a sympathetic manager in the workplace. Commuting distance between work, home and the older person also posed difficulties for carers, along with inflexible schedules and work overload. Employers are urged to explore these issues further if they are serious about recruiting and retaining employees, and developing the work – life balance agenda to meet the needs of those caring for older and disabled adults.     

Disability, Ethnicity and Childhood: a critical review of research

Whilst there is an increasing body of literature on the perspectives of carers of disabled children, there is little research giving the disabled child's perspective from either majority or minority populations. Indeed, the voices of black and Asian children in disability research have been almost silent. This literature review collates and analyses existing knowledge about the perceptions held by disabled and non-disabled children, and young people from black and Asian families concerning issues of disability and impairment. The Disability Movement has long proclaimed its belief in the full participation and self-representation of all disabled people. However, despite this laudable objective, the Disability Movement in Britain has mirrored society in general and for the most part been led by white, middle-class, heterosexual, articulate males. This review discusses the simultaneous oppression faced by black and Asian disabled children, and concludes that their experience is unique and different from that of white disabled children. Accordingly, it emphasises the need for further research about the subjective experience of black and Asian disabled children in order to meet their particular needs.     

All Work and no Play? Understanding the Needs of Children with Caring Responsibilities

This article draws on research with children who provide care for parents with serious mental health problems and signals ongoing research that uses photographic participation methods with these groups of vulnerable children. The intention of this article is to highlight the need to move away from popular and simplistic representations of children with caring responsibilities (young carers) as victims of their parents’ illnesses, as ‘little angels’ whose caring work is condoned through rewards or as (exploited) informal domestic workers whose childhoods are inevitably compromised by the caring activity they undertake. Recommendations are made for generating deeper understanding about the lives and needs of children who are affected by parental impairment that is congruent with the thrust of current UK policy, Every Child Matters and the 2004 Children Act.     

Foster fathers performing gender: the negotiation and reproduction of parenting roles in families who foster

ABSTRACT

Foster care research and social work practice tend to focus on how women look after children living in foster care. This focus has limited our understanding of what it is that men do within foster caring families and they are automatically assigned secondary or breadwinning roles. Families who foster involve some form of renegotiation of roles to care for children they foster. While foster caring arrangements are internationally diverse, foster carers often work with social workers. It would therefore seem important for social workers to understand how foster carers negotiate their parenting roles. This paper reports findings from seven main caring foster-fathers who took part in a wider study involving twentythree foster-fathers. The evidence provided by these foster-fathers demonstrate they are highly motivated to care for children and, alongside delivering traditional parenting roles, they negotiate new, non-traditional parenting roles as foster-fathers. These new roles, taken on by foster-fathers, often challenge stereotyped masculinity while they also concurrently enact parenting norms. This study applied Judith Butler’s work on performing gender to foster caring families to theorise on the process whereby foster-fathers negotiate diverse masculinities and continue to reproduce gendered relations in foster caring families.     

Supporting families: Outcomes of placement in voluntary out-of-home care for children and young people with disabilities and their families

Parents caring for children and young people with disabilities typically have extensive additional demands on their time and resources. This added pressure can significantly impact well-being and mental health. In extreme circumstances, parents may seek an out-of-home placement for their child. Previous research has looked into factors that influence decisions for families to place their child into out-of-home care but little is known about outcomes for these young people and their families. The Supporting Families study aimed to explore the impact of a voluntary out-of-home placement on young people with disabilities, and consequences for their families. Fourteen parents/carers, twenty six case managers, six accommodation services' managers, and four young people with disabilities participated in face-to-face and telephone interviews and focus groups. Participants reported a range of outcomes for young people in care. Positive outcomes included increased levels of respect for themselves and others, an improvement in independent living skills, and reductions in challenging behaviours. Negative outcomes centred on their experiences of grief, loss and rejection, as well as behavioural problems. Positive and negative outcomes were also found for families. For many parents/carers there was a reduction in perceived stress and caring load, as well as improved mental health and wellbeing for them and the child's siblings. However, parents/carers often experienced ongoing feelings of guilt, grief and loss. The study adds to knowledge about outcomes of being in voluntary out-of-home care for this small but vulnerable group of young people in care and their families.     

Seeing the Invisible Children and Young People Affected by Disability

This paper presents a brief review of literature relating to children in families with a disabled member, including the 'young carers' and disability studies literature, and relevant works from the social psychology and sociology of childhood. Key themes identified in the literature are then illustrated by findings from two exploratory research studies that sought to explore the experiences and service needs of children in families with a disabled member, within two Scottish areas. The authors suggest that, although young people affected by disability in the family, including young carers, face significant problems, particularly in socially disadvantaged areas, there are other issues that need to be addressed. Alternative conceptual frameworks are proposed, which challenge the dominance of the young carers research paradigm.     

Living with Duchenne Muscular Dystrophy: Relational Autonomy and Decision‐Making

Interviews were conducted with boys and young men who have Duchenne muscular dystrophy, exploring their thoughts on making a decision to participate in medical research. This article focuses on one of the key findings, discussing how the participants identified their parents as carers, spokespersons and advisors. The term ‘relational autonomy’ encapsulates these co‐operative relationships, illustrating how they can help young people living with a degenerative disability to exercise some agency and autonomy. The boys and their families have demonstrated how disabled children who are physically dependent can be supported by their parents, without compromising independence.     

Emancipating play: dis/abled children,development and deconstruction

This paper reflects critically on the meaning of play, especially as it relates to disabled children and their experiences. We explore the close alliance of play to cognitive and social development, particularly in the case of psychologies of development, and reveal a dominant discourse of the disabled child as a non‐playing object that requires professional therapeutic intervention. We argue that this pathologisation of play on the part of disabled children is closely tied to normalisation of childhood, in which non‐normal bodies are increasingly expected to be governed and corrected not only by professionals but also by parents/carers. In order to rescue more enabling visions of the disabled child and their play we turn to three perspectives – the new sociology of childhood; social oppression theories of disability; critical developmental psychology. These resources, we suggest, allow us to reconfigure what we mean by play and disability in a contemporary climate that celebrates competition and marketisation over the intrinsic potentialities of all children. We argue that how we conceive play will per se undermine or promote forms of inclusive research, policy and practice.     

‘..It takes a lot of brain space’: Understanding young carers’ lives in England and the implications for policy and practice to reduce inappropriate and excessive care work

This qualitative study, undertaken in England, explored young carers’ perspectives on the nature of their caring responsibilities. The findings are significant, particularly in the context of England's Care Act 2014, which seeks to prevent children engaging in ‘excessive’ or ‘inappropriate’ caring. Our research placed children at the heart of the debate on what constitutes appropriate care. The findings raise key questions regarding effective implementation of contemporary child policy, duties of care towards children in caring roles and priorities for child protection and family support policy and practices, with the potential to inform thinking around child's well-being in wider contexts.     

Punishing Children for Caring: The Hidden Cost of Young Carers

SUMMARY. This paper examines the lives, experiences and needs of children who care - those children under the age of 18 who provide primary care for a sick, disabled or elderly adult in the home. It presents data from a recent study into the lives of these children, their responsibilities, their commitments, their pain and their fears. It paints a picture of neglect both by professionals paid to care as well as by other family members. It suggests that child carers are effectively punished for caring. The paper goes on to examine the implications for child carers of the Community Care Act, finally implemented on 1 April 1993, to raise a number of critical questions about the rights of children who care, and to suggest a number of innovative ways forward, based upon the expressed needs of young carers.     

Self-identity and the arts education of disabled young people

Overall, little is known about the ways in which disabled children and young people produce artwork or how they experience arts education. Neither is it known to what extent they are encouraged to produce work that engages with the expressive development of a sense of self that incorporates experiences of impairment and disability. This article is based on my recent PhD research which has investigated the ways in which a group of disabled young students are being enabled, via their arts education, to engage in a process of self-realisation whereby negative and oppressive perceptions of disability have been identified and addressed via their artwork. Whilst current post-social model discourses that emphasise the multiplicity or plurality of identity are acknowledged, my research has demonstrated that disabled young people can be empowered through the expression of the lived experience of impairment and disability and thereby encouraged towards a positive, inclusive and potentially multi-identity perspective.     

The ideology of neuroscience and intellectual disability: reconstituting the ‘disordered’ brain

During the last two or three decades, neuroscience has changed how we understand brain functioning. This shift, which is re-conceptualizing the relationship between the materiality of the brain and consciousness, is bound to have implications for intellectual disability, which is commonly seen as a condition of the brain. At present, examinations of intellectual disability that deploy techniques and concepts from neuroscience constitute a growing research field that has been welcomed in some quarters of the disability research community. The purpose of this article is to urge for caution as regards this development. I argue that the neuroscience of intellectual disability is embodying ideological propositions that need to be problematized. By theorizing the relationship between biology and politics and examining neuroscientific publications on intellectual disability, I argue that this strand of research is underpinned by a discursive division between normal and pathological, that it therefore constitutes a continuation of understanding intellectual disability as a ‘disorder’ and that any firm separation between the ‘nature’ of intellectual disability and processes of power is inherently problematic. To be able to critically approach the neuroscience of intellectual disability, it is vital that disability researchers problematize the relationship between biology and politics.     

Area agency on aging outreach and assistance for households with older carers of an adult with a developmental disability

A demonstration project was undertaken in the state of New York to assess how area agencies on aging (AAAs) would approach outreach and direct aid to families caring for someone with a developmental disability. It was found that AAAs organized their outreach and direct-aid efforts using three main approaches: direct operation, contract operations, and multi-organizational. They generally organized staff time so that about two days per week of effort was devoted to undertaking outreach activities, conducting community education, and providing casework and referrals for target families. Four major distinctions were identified that differentiated work with older carers of persons with a developmental disability from that with other kinds of carers: complexity of problems presented by households identified, vagaries of fiscal resources, diverse household composition, and planning for eventualities. It was concluded that targeting AAAs for outreach and providing help to these carers was effective and productive and should be replicated throughout the United States.     

Young Adult Carers: The Impact of Caring on Health and Education

Research has shown that young people who care for parents and relatives (young carers and young adult carers) are at greater risk of mental and emotional difficulties and are more likely to do badly at school or college. To explore the difficulties faced by young adult carers (aged 14–25) in the UK, an online survey was conducted. Almost half (45%) of the 295 respondents reported having a mental health problem. The relationship between the extent of caring and perceived mental health problems and the impact of caring responsibilities on work and education were investigated.     

Parents with a Learning Disability: research issues and informed practice

This paper commences with an examination of the concept of parenting and then applies its findings to parents who have a learning disability. It is argued that views on parenting, drawn from mainstream developmental psychology from parents who do not have a learning disability can inform our thinking about parents who do have a learning disability and provide an agenda for future research. In particular, we look at skills-based approaches to parenting, parenting as a motivated activity, cultural and historical factors influencing parenting, and lay views on children and childhood. The conclusion was reached that, although an audit of what people with a learning disability believe and expect about children is valuable research, the critical issue is how this knowledge is applied in parenting practice.     

Special Children,Integration and Moral Education

SUMMARY: This paper explores issues concerning the integration of children with disabilities into mainstream schools and draws out the implications of the discussions for moral education. Social and personal theories of disability are reconciled to provide a basis for a moral education which bridges ‘alternative’ moral traditions. I argue that successful integration requires a moral education for teachers and pupils which encourages the development of both a ‘caring justice’ and a ‘judicious care’.     

The enforcement of normalcy in schools and the disablement of families: unpacking master narratives on parental denial

The notion that some parents may be ‘in denial’ is a pervasive theme in dominant discourses on families of children with disabilities. In this analytic essay, I deconstruct cultural and institutional master narratives on parental denial and discuss their role in the marginalization of students with disabilities in schools. I argue that discourses on parental denial privilege the perspectives of those in positions of power and control, leave the practice of ability-based segregation in schools unexamined, and discredit agency among families. Additionally, drawing from existing narrative-based research, I explore alternative interpretations of parents’ responses to their children’s differences, situating these in the framework of critical disability studies.