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.     

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.     

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.     

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.     

A bit more understanding: Young adults' views of mental health services in care in Ireland

Children and young people in the care system typically experience very high levels of mental health difficulties, yet their views of these difficulties and of mental health services have rarely been explored. For this qualitative study we spoke with eight young adults aged 18 to 27 years with experience of the care system in Ireland about mental health challenges, service experiences, and how they felt mental health services needed to improve. Themes from the interviews illuminated young adults' views of their emotional well-being while in care, and the double stigma of being in care and mental health difficulties. In terms of services, young adults wanted these to be flexible and sensitive to level of need; to offer choice and more congenial environments; to provide more creative routes to engaging young people; and to offer honest, reciprocal, caring communication — treating children in care as one would any child. Recommendations highlight three key needs: an ethic of care in services as well as an ethic of justice; mental health training for all professionals in contact with children in care; and the need to listen, hear and act on what children and young people say.     

'Young Carers' and Disabled Parents: Time for a change of direction?

In less than a decade, children who provide care for ill or disabled parents and siblings have become a major target of social welfare services. 'Young carers' suffer, it is suggested, from a degradation in mental and physical health, have damaged educational careers, restricted social networks, and will suffer long-term consequences in adult life as a result of their childhood caring roles. This paper argues that limited empirical evidence exists for these claims and that, where legitimate concerns arise, they are frequently related to poverty, social exclusion, and unsupported or inadequate parenting, and have no direct relationship to illness or impairment. While dedicated services to young carers have made a valuable contribution in highlighting an important social issue, a radical review of their place in the overall structure of support services for families affected by illness or disability is long overdue.     

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.     

Experiences of Family Carers for Persons Using Antipsychotic Medication

Given the emphasis on the use of antipsychotic medication for severe mental illness, it is important to understand family carers’ perspectives on these medications and their effects on consumers’ lives. Such information may enable providers of family interventions to better understand families’ circumstances and more effectively support them in caring for mental health service users. Snowball sampling was used to recruit 29 family carers. Family carers acknowledged the calming effect of antipsychotic medication on service users, but also noted that there were few other therapeutic benefits. Moreover, the positive influence of antipsychotic medication was in most cases largely offset by the detrimental impact of antipsychotic medication on service users’ quality of life. The family carers in rationalising the trade‐off between beneficial and adverse antipsychotic medication effects typically experienced resignation, which was often accompanied by a sense of frustration that resulted from the reliance on medication.     

Counting Young Carers in Switzerland – A Study of Prevalence

An online survey of children in school grades 4–9 (mostly aged 10–15) was conducted in order to determine the prevalence of young carers in Switzerland using a 2‐stage stratified sampling approach. 4082 respondents were drawn from 230 schools. A total of 3991 respondents were included in the analysis and of these 307 (7.7%) were identified as young carers. The population estimate of prevalence was 7.9 per cent. This suggests that there are around 38 400 young carers in school grades 4–9 in Switzerland. Extrapolating to the 9–16 age group gives a figure of almost 51 500.     

One million and counting: the hidden army of young carers in Canada

The term ‘young carer’ refers to those youth under the age of 25 years who provide substantial unpaid support to a family member due to factors including, but not limited to, familial or parental absence, disability, mental health issue(s) or problems with alcohol and/or other drugs. In the UK, national statistics have been integral to tracking the prevalence of young carers while serving as an important tool towards the development of (and justification for) a national legislative framework supporting these youth. In Canada, research and awareness for young carers remains in its infancy and available national datasets have yet to be examined in relation to youths providing unpaid caregiving. As a result, this research provides the first trend analysis of youth-based caregiving in Canada using census data for the 1996–2006 time-period. Methodological limitations of official statistics are also discussed in terms of conceptual and operational constraints limiting the full identification of all those potential young carers.     

Mental health support needs of people with a learning difficulty: a medical or a social model?

People with learning difficulties, like all disabled people, face social oppression. Much recent policy and practice are underpinned by at least some understanding of this oppression, and the social model of disability has been influential in discussions of services and supports for people with learning difficulties. However, in the area of mental health, the picture is somewhat different. This paper argues that the medical model has predominated in discussions of mental health support for people with learning difficulties, and that a social model approach could have much to offer. The paper draws on an ongoing action research study in which service providers, families and young people with learning difficulties are working together to articulate what is needed, in order to find routes to improve the support offered to young people with learning difficulties and mental health support needs.     

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.     

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.     

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.     

Family caregivers of the elderly: quality of life and coping in Estonia

The purpose of the study was to analyse the assessments of elderly people aged 65 and more about family caregiving as a factor influencing their quality of life and coping. The study is based on the project SUFACARE—‘Supporting family carers and care receivers in Estonia and in Finland’—in the framework of which the Institute of Social Work of Tallinn University carried out postal surveys in 2010. The Estonian survey was conducted in Tallinn and Lääne-Viru County. The total number of respondents was 581 (70% female and 30% male), of whom 98 (n=74 female and n=24 male) were family caregivers. Caregiving has not influenced the physical and mental health of caregivers, the reason being that many people who receive care are not of very ill health or suffer from dementia. People mostly take care of their spouses. Based on the Estonian Family Law Act (RT I 2009, 60, 395), adult descendants are required to provide maintenance if their relatives are not able to care for themselves. Caregivers whose health is below average consider caring to be physically demanding. We cannot speak of the social isolation of respondents who have care duties—they communicate actively and do not feel lonely. Women report caregiving to be physically strenuous more often than men. The mental health of male caregivers is better—fewer male respondents claimed to feel unhappy or depressed compared to female respondents.     

Child Protection Workers’ Perceptions of Foster Carers and the Foster Care System: A Study in Queensland

Abstract

Child protection workers are key players in the statutory system for the protection of children and young people. For this reason, their perceptions of the operation of the system are important. This study, conducted in Queensland, Australia, explored the views of child protection workers regarding foster carers and the foster care system. The present study revealed the difficulties the child protection workers encountered in engaging with foster carers. These difficulties were due to the structure of the child protection system and the conflicts experienced by workers in balancing the needs of children and young people, their primary clients and the carers of those children and young people. Several recommendations for policy and practice are made.     

Editorial

In this paper I shall provide a self‐reflective account of the development of a psychoanalytic psychotherapy service for the parents and carers of children considered to be at risk of abuse or neglect by social workers or child mental health professionals. I will discuss some of my thinking in setting up such a service and the difficulties, both clinical and operational, that I have encountered. I will draw tentative conclusions about the effectiveness of once‐weekly psychotherapy for parents in protecting their children from harm and promoting their development. I will illustrate the difficulties and my conclusions with clinical material.     

‘..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.     

Foster carer stress and satisfaction: An investigation of organisational,psychological and placement factors

The unique demands of the foster carer role are associated with high levels of self-reported stress among foster carers. The current study examines the amount of carer stress that can be attributed to certain role specific challenges and how stress from these challenges varies between carers and placements. As a secondary aim the study examines carer perceptions on current organisational support and training. Participants were sourced from a national fostering agency with branches in the local area. Carers were eligible to participate in the study if they were caring full time for at least one foster child. Eligible carers completed an identical online or paper survey including measures of general stress and parenting stress as well as study specific measures regarding satisfaction with organisational training and support. Results demonstrated that challenging behaviours are the most stressful unique role demand for foster carers and the largest predictor of carer stress levels. Overwhelmingly carers reported a desire for additional training in order to support them in their role. The results support previous research outlining the difficulties faced by foster carers and the need to improve support and training to ensure good placement outcomes including placement stability and reduced carer attrition.     

Sexuality as a Perceived Hazard in the Lives of Adults with Learning Difficulties

Qualitative research by the present authors has suggested that the management of hazards is a central issue for adults with learning difficulties (adults) and informal carers. This paper focuses on adult sexual relationships as a perceived hazard. Informal carers viewed such relationships as unacceptably dangerous. Those from 'danger avoiding' families, who had low risk tolerance, prohibited situations which might lead to a sexual relationship, e.g. privacy with a boy or girlfriend. Informal carers from 'limited risk taking' families gave adults more scope, e.g. to move freely round the locality, and were anxious that the adult, unsupervised, might become involved in a sexual relationship which he or she could not manage. Adult views about their own sexual relationships are analysed in these social contexts, and the implications for professional practice aimed at enhancing adult autonomy are briefly considered.