Young adult carers: a literature review informing the re-conceptualisation of young adult caregiving in Australia

The experiences of young adult carers (YACs) have been vastly under-researched, particularly within Australian caregiving literature. This article explores the existence, extent and nature of informal young adult caregiving in Australia, defining YACs as individuals aged between 18 and 25 years who provide unpaid care or support to family members living with chronic illness or disability. The aim of this article is to provide a foundation for the re-conceptualisation of YACs as a distinct carer cohort who, without suitable recognition and specifically targeted support, may experience significantly reduced future life opportunities. The traditional, narrative-based review will first redefine YACs in accordance with overseas literary definitions and will then explore the complex nature and extent of young adult caregiving in Australia. Explanations as to why young adults are increasingly undertaking these informal caregiving roles and how YACs differentiate from their non-carer peers will then follow. Finally, three prominent paradigms, namely the clinical, social capital and carers' rights' perspectives, will be presented to establish a greater understanding of the implications, contextual experiences and unmet civil rights of YACs in Australia.     

The family caregiving career: implications for community-based long-term care practice and policy

Informal (i.e., unpaid) long-term care for disabled older adults is often chronic, but it is only recently that research has considered the longitudinal implications of family caregiving. In particular, investigators have conceptualized caregiving as a "career," and within the caregiving career, a number of diverse trajectories and transitions can occur. Following a summary of these findings, this paper considers how longitudinal caregiving research can influence and potentially address key policy and practice concerns, especially in the delivery and support of community-based long-term care (CBLTC) services. It is suggested that with the refinement of the informal long-term care literature, existing policy and practice to support caregiving families can be similarly advanced.     

Unfolding What Self-Compassion Means in Young Carers’ Lives

Child and Adolescent Social Work Journal - Young carers (YCs) are children and youth who provide caregiving for family members who may experience an illness, disability, addiction, language...     

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.     

Links between informal caregiving and volunteering in Sweden: a 17-year perspective

This article analyses informal caregiving and volunteering in organizations over 17 years in Sweden, with a focus on links between these two forms of unpaid activities. The discussion is based on results from a national survey that was repeated four times in the period 1992–2009. Links were found between the different types of activities. In all four studies a substantial group of the population was involved both in informal caregiving and volunteering. This group of ‘active citizens’ are commonly also engaged in informal social networks. This ‘double active’ group had increased over time and they provide a substantial amount of hours of involvement. Patterns outlined in this article demonstrate that unpaid activities represent a multifaceted phenomenon, and that the boundaries between informal caregiving and volunteering as forms of engagement may be more fluid than has previously been acknowledged. The results challenge the literature in which informal caregiving is viewed as a major obstacle to volunteering. At the same time, however, informal caregiving in general was found to be increasing. There might be reasons to be cautious about the possible risk that too much pressure on citizens for informal caregiving might jeopardize the type of double involvement that is outlined in this article.     

Health of Carers of Young People with Early Psychosis: A Biopsychosocial Approach

Despite widespread recognition of the usefulness of a biopsychosocial approach in social work, there are limited studies exploring how social workers can use this approach to support the health and wellbeing of carers of young people with first episode psychosis (FEP). Validated questionnaires and anthropometric measures were used to assess the physical health and wellbeing of 42 carers of young people with FEP. Carers had moderate levels of negative caregiving consequences, quality of life, and health status. More than half (52.4%) of carers were experiencing social isolation. Many carers were overweight (78.6%), had a high risk for type 2 diabetes (39.0%), and had hypertension (33.3%). Practical implications of a biopsychosocial approach to social work that supports both clients and their carers are discussed.     

Women and the work of caring

In the U.S., care for chronically dependent people is done mostly by family and friends, with only sporadic community support. Though such unpaid caregiving work--the bulk of it performed by women--constitutes an enormous subsidy to the national welfare, the contribution is undervalued, and the negative practical consequences for caregivers seldom recognized.     

The Role of Carers and Caseworkers in the School-to-work Transition of Young People in Care

Abstract

How young people in State care decide upon future careers, and the support offered for this process by carers and child protection caseworkers, has received little research attention. This qualitative study sought the views of young people in care, foster and kinship carers, and child protection caseworkers about career development for in-care youth. We found young people were thinking about career options but encountered a safety driven, acute casework approach, which sidelined education and work planning. Career development was not viewed as a caseworker responsibility, and, by default, was primarily developed by carers. The study highlights the need for a greater focus on the transition to adulthood and the inclusion of career development in policy and practice development.     

Caregiving and Volunteering Among Older People in Sweden—Prevalence and Profiles

This study examines the role of older people in Swedish society by exploring the prevalence of their informal caregiving and volunteering and by analyzing the profiles of these contributors of unpaid work. Data were collected by means of telephone interviews in a Swedish representative survey conducted in 2005. Our analysis reveals three distinct profiles of people involved in unpaid activities. One of these consists of those involved both in informal helpgiving and volunteering, a group that has been labeled “super helpers” or “doers” in earlier research. It is important for social policy planners to recognize these groups of older people and better understand the dynamics of their unpaid work in order to ascertain whether they might need support as providers and to enhance their well-being. There does not seem to be any simple contradiction between the parallel existence of a universal welfare model of the Swedish kind and an extensive civil society in which older people play important roles as active citizens.     

The Promise of an Accumulation of Care: Disadvantaged African-American Youths’ Perspectives About What Makes an After School Program Meaningful

African-American youth growing up in dangerous, deprived homes and communities are at great risk of developing impaired relationship capabilities, which disadvantages them further in the workplace and in their personal lives. While after-school programs have well-documented positive effects, researchers have called for better understanding of improving youths’ engagement in services and their constructive relationship skills. Here, we report on a project using participatory action methods to engage poverty-level African-American youth in developing a leadership development program they would find most meaningful. Stand Up Help Out (SUHO) gave youth three layers of caregiving experience: receiving care from instructors, giving and receiving care from peers, and providing care through constructive community action initiatives and mentoring elementary school children. Findings were that: (1) participation and retention of youth in SUHO were considerably higher than national averages; (2) youth reported that SUHO made it possible for them to have better relationships as friends, romantic partners, and in academic settings, and they looked forward to being better parents, (3) youth developed positive peer relationships despite a context of mistrust and gang violence, (4) youth actively sought out relationships with caring adults and identified what was most meaningful in those relationships, and (5) youth deeply valued the opportunity to develop their ability to care for others.     

Space,time, and self: Rethinking aging in the contexts of immigration and transnationalism

Critical gerontology views aging as a social construction that reflects the intersections of micro-processes with the macro-level forces of individual aging experiences. In the contexts of immigration and transnationalism, however, the macro-structural conditions, dynamics and experiences of aging have become further diversified and complicated. The dearth of empirical and explanatory knowledge in this area has inhibited us from comprehending aging in a changing world. Drawing on data from a study of Chinese grandparents' experiences of transnational caregiving in Canada, this article examines the impacts of such experiences on three interconnected dimensions – spatial, temporal and cognitive – of aging. Although the practice of transnational caregiving allows skilled immigrant families to mobilize care resources outside Canada, it has not only ruptured the traditional trajectories of aging for their elderly parents, but also complicated the inequalities that they have to bear on individual, familial and transnational levels. I argue that the critical examination of aging in the context of transnational caregiving helps us take into consideration those dimensions (such as place, space, time, and knowledge) that are changed by immigration processes, and rethink aging from a broader perspective that links seniors' experiences with their relationship with their adult immigrant children's families and macro-structures outside national borders.     

The caring child: an evaluative case study of the Cornwall Young Carers project

This paper reports on an evaluation of the Cornwall Young Carers project (jointly funded by social services and the Cornwall and Isles of Scilly Health Action Zone), conducted during the period 2000–2002. A diverse range of methodological approaches were adopted (comparative national statistics, local pilot study, monthly and quarterly data capturing instruments, and a service user focus group) in monitoring and evaluating the project's high level statements/outcomes. Four evaluative themes are discussed, namely: identification of young carers; assessment of young carers' needs; direct service provision; and partnership working. Recommendations and action steps are proposed with a view of informing future planning and service delivery, as well as developing an ethos of integrating evaluation into everyday practice for the Cornwall Young Carers Project. Overall, the project has made significant progress in meeting and exceeding its original targets. The fact that the project has been able to identify 202 new young carers over this period is a key milestone in demonstrating the critical need for the project's services. It is suggested that existing referrals are only the ‘tip of the iceberg’ for work with young carers in Cornwall.     

‘Individual and connected’: an exploration of young people’s discourses about youth cafes in Ireland

Since 2000, youth cafes are accorded prominence in Irish youth policies and research. Youth cafes are drug and alcohol free recreational spaces and research shows that they impact positively on young people. Youth cafes are broadly similar to youth clubs, but they are less structured and are primarily youth-led spaces. This paper draws on qualitative materials from a national study of youth cafes in Ireland, arguing that young people’s perceptions of youth cafes are linked to individuality and connectedness. In this paper, we explore these discourses surrounding individuality and connection in detail and argue that youth work in the twenty-first century must simultaneously appeal to young people’s need for space to ‘be’ and to find themselves and provide a structure within which they can relate to others and wider society.     

Young people,future hopes and concerns in Finland and the European Union: classed and gendered expectations in policy documents

In this article, I examine the ways in which governing bodies at the Finnish national and also European Union levels talk about young people and our shared future in Finland. I use their youth policy documents as material for critical discourse analysis. My argument is that, besides presenting visions of a desired future, these papers also produce and reproduce divisions between young people that reflect gender and class positions. Young people are divided into those who have potential, those who will take care of others’ needs, and those who are at risk of marginalisation. I also argue that the Nordic policy tendency to conceive of youth as a resource rather than as a problem is not consistent. Finnish youth policy has changed, firstly because of the changing economic environment – the politics of austerity – and secondly because of Europeanisation.     

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.     

Youth leaving care: how do they fare?

This chapter summarizes recent Canadian and international research on the outcomes for youth after they age out of the child welfare system. It paints a disturbing picture for this small and vulnerable population. Youth leaving care face many challenges in making the transition from state care to independence and adulthood. They bear the emotional scars of childhood neglect or abuse. They do not have a family support network, have limited or no financial resources, are often lacking in life skills, and usually have not completed school. Despite these setbacks, we expect them to function independently once they reach age eighteen. Research shows that once youth leave care, they do not fare as well as their peers. They are at much greater risk of relying on social assistance, becoming homeless, engaging in substance abuse, becoming single parents, experiencing mental health problems, or coming into contact with the criminal justice system. Some youth aging out, however, have more successful transitions. These typically have completed high school, have role models, have access to postsecondary opportunities, refrain from alcohol or drug use, and obtain life skills and independent living training. Having stable placements while in care is also critical in ensuring more positive outcomes. Canada does not have the capacity to track the outcomes of youth as they leave the child welfare system, nor can it identify the types of interventions showing the most promise in helping them achieve better outcomes. Canadian governments need to improve their transitional planning for youth in care who are approaching the age of majority. Some recommendations include extending the age for services and financial assistance to age twenty-four, developing standards to prepare youth for leaving care, and exploring ways to enable youth to pursue higher education or training. Finally, Canada should develop a national longitudinal survey to monitor the outcomes of youth after they leave care.     

Carers of People with Mental Illness from Culturally and Linguistically Diverse Communities

Australia is a multicultural country and it is common for families from culturally and linguistically diverse (CALD) communities to care for their relatives with mental illness. However, there are limited Australian studies examining the experiences of informal carers of people with mental illness from CALD communities. A scoping review was conducted to search for peer-reviewed articles reporting the perception of carers regarding their caregiving experiences, wellbeing, and needs. Using cultural responsiveness as a conceptual framework, this study analysed the findings of the identified studies to generate themes. Findings show that carers experience severe caregiving challenges and face considerably poor culturally oriented services in mental health. Social work implications concerning the need to provide culturally responsive practice in mental health services are discussed.     

Diasporic youth culture of K-pop

This study examines how diasporic Korean youth engage with the recent global circulation of South Korean pop music (‘K-pop’). It explores how young diasporic Koreans negotiate K-pop as an ethnic and/or global cultural form in their transition to adulthood. Drawing on interviews with young people of Korean heritage in Canada, the study addresses how a diasporic sound, which connects the nostalgia for the ancestral homeland and the global mediascape, is appropriated for young people’s identity work. By examining diasporic Korean fans’ consumption of K-pop, this study suggests a perspective for understanding the recent K-pop phenomenon as a diasporic youth cultural practice.