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.     

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.     

The accommodation and support needs of people with a mental illness: A process and framework for action

Abstract

This paper reports the results of a consumer-focused assessment of the accommodation and support needs of people with a mental illness living in a regional city. The study utilises a 'pathway to stability' approach to assess the phase-contingent accommodation and support needs of mental health consumers through interviews and focus groups with consumers, carers and service providers. The study identifies five broad phases of the life course impacted by mental illness—beginnings, long-term needs become clearer, instability as needs evolve, finding stability and ongoing. Five key issues—information, self-competence, comorbidity, coordination and flexibility were expanded upon in focus groups. Principles for planning future service delivery are identified. The implications of the findings and research methodology for social work practice and research are discussed.     

A Hitchhiker's Guide to caring for an older person before and during coronavirus‐19

Coronavirus‐19 (COVID‐19) has reconfigured working lives with astonishing velocity. Older people have suffered the worst effects of the pandemic, with governments marginalizing or overlooking their needs. Women perform the majority of care for older people, often compromising their working lives and health. Yet in academic articles their voices are often filtered or aggregated in quantitative studies. Based on a weave of personal experiences and secondary research, the article traces a path through UK forms of care and shows how the inadequate response to COVID‐19 stemmed from existing policies embedded in health and social care. COVID‐19 has severed important informal care work, rendering the vulnerable yet more exposed and carers anxious and bereft. Longitudinal research capturing the trajectory of care from the perspective of older people and their carers would lead to improved support hence gender equality.     

Incorporating children's lives into a life course perspective on stress and mental health

Emerging themes in demography, developmental medicine, and psychiatry suggest that a comprehensive understanding of mental health across the life course requires that we incorporate the lives of children into our research. If we can learn more about the ways in which the stress process unfolds for children, we will gain important insights into the factors that influence initial set points of trajectories of mental health over the life course. This will simultaneously extend the scope of the stress process paradigm and elaborate the life course perspective on mental health. Incorporating children's lives into the sociology of mental health will also extend the intellectual influence of the discipline on sociomedical and biomedical research on mental illness. I contend that sociology's greatest promise in understanding trajectories of mental health across the life course lies in a systematic analysis of the social and social-psychological conditions of children, the stressful experiences that arise out of these conditions, and the processes that mediate and moderate the stress process in childhood. In this regard, there are three major issues that sociologists could begin to address: (1) the identification of structural and institutional factors that pattern children's exposure to stress; (2) the construction of a stress universe for children; and (3) the identification of key elements of the life course perspective that may set or alter trajectories of mental health in childhood and adolescence.     

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.     

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.     

Making Direct Payments a Choice: a report on the research findings

We describe research done in the London Borough of Tower Hamlets under the supervision of the local Coalition of Disabled People. It involved three different client groups-people with learning difficulties, mental health service users and those with physical disabilities. Few of these service users, their carers and staff had any experience or knowledge of people with disabilities receiving cash to purchase their own support. The study focused on several issues: how to provide effective information; what sorts of support could direct payments purchase; how could it be accessed; how could users handle the money; how could it all be evaluated? Most carers, staff and users considered this radical idea favourably, but were suspicious of their own local authority and would want independent systems of supervision and monitoring, accountable to other users, rather than professionals.     

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.     

Responding to Adolescent Violence in the Home – A Community Mental Health Approach

Family violence perpetrated by adults is increasingly understood as a health issue, and we argue that this pertains even more strongly to violence by adolescents. The co-dependence of the parent–child bond, lack of maturity in the adolescent, and often related issues of disability or mental illness make these young people both complex and also vulnerable. This research paper reviews the current literature relating to adolescent violence in the home, identifies known best practice, and evaluates the importance of taking a family-focused, therapeutic approach to adolescent family violence, in place of a punitive one. It describes the use of a co-design workshop to unpack gaps in service provision and develop a potential family focused model of care to address the needs both of young people who use violence, and their families. The findings indicate that an inclusive family approach is a key element in addressing adolescent violence in the home across a spectrum of behaviours and mental health care needs. The use of a coordinated, family-inclusive response through mental health care services is recommended to address the complexity of this issue, as well as to provide support both to adolescents and to their families and carers.     

Mental Health Consumer and Carer Participation in Professional Education: ‘Getting There Together’ for Children of Parents with Mental Illness and Their Families

Abstract

‘Getting There Together’ is a professional education seminar developed as a collaborative project by professionals, mental health consumers and carers aimed at service providers who work with children of parents with mental illness and their families. The need for such professional education concerning this group is well recognised and the project reported herein was initiated by a reference group of professionals, consumers and carers focusing on children of parents with mental illness in the Eastern region of Melbourne (Victoria, Australia). The project began and continued as a collaborative effort during development and implementation, which ensured the experience, point of view and voice of consumers and carers was central to the material prepared, and at the time of seminar presentations. Seminar participants were from the family welfare, child care and supported housing sectors. Seminar participants found the first person accounts of consumers and carers the most helpful aspects of the seminars because they gave new insights into the experiences of carers and of mental health consumers as parents, as well as an understanding of ‘… the whole family, and how the child fits into the picture’.     

Children’s Concerns about their Parents’ Health and Well‐being: Researching with ChildLine Scotland

This paper reports on collaborative research conducted with ChildLine Scotland, a free, confidential, telephone counselling service, using their database. We focussed on children’s calls about parental health and well‐being and how this affected their own lives. Children’s concerns emerged within multi‐layered calls in which they discussed multiple issues and problems in their lives such as alcohol misuse, drug misuse, domestic violence, family relationships, depression, mental health problems and bereavement. We discuss how children were making sense of these experiences; how they were trying to get by in difficult family circumstances; whose help they valued; and conclude with implications for policy and practice.     

Book reviews

This paper addresses a number of issues concerning the future prospects for social work and mental health in England and the implications of these for social work education. In particular the significance of interprofessional practice and education will be examined and these will be located within the wider context of the social work contribution to mental health services. The experience of social work in promoting the interests and involvement of service users and carers and of working within a holistic model will also be recognised. The particular value of the social work contribution to mental health in both mental health and non-mental health settings is emphasised and attention is paid to how this could be strengthened and extended in the light of the opportunities for positive and creative developments offered by the introduction of the new 3-year degree. These will include the development of shared learning with other professional groups and the need to prepare social work students for practice within a rapidly changing world.     

Direct What? The Untapped Potential of Direct Payments to Mental Health Service Users

This article describes research carried out for the Central Research Unit of the Scottish Executive about Direct Payments to mental health service users including people with dementia. Previous research had found that Direct Payments were not often, if at all, offered to mental health service users. Using focus groups, interviews and a telephone survey, Scottish Health Feedback explored the extent of implementation of Direct Payments across Scotland, and the views of mental health service users, carers and professionals about the idea of Direct Payments, the potential obstacles, and the support that would be needed. Awareness of Direct Payments was low, even among professionals. Many were hearing about this option for the first time through this research and a common reaction to the research questions was 'Direct what?' The study found that in order to make Direct Payments work for mental health service users, what was needed was 'person-centred' assessment, access to proper support, advice and training, and Direct Payment schemes that were flexible to allow for different arrangements and for transitions.     

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.     

Do male and female gamblers have the same burden of adversity over their life course?

The objective of this research is to investigate gender difference and the burden of adversity during the life course of people who develop gambling problems. A sample of 86 adult participants met the criteria for at-risk problem gambling over the last 5 years. Data were obtained from informants during semi-structured face-to-face interviews, using SCID I and II, SOGS, Module K and a recount of life trajectories methodology. The results showed a high level of adversity throughout the life trajectories of the men and women studied. The results indicated that the major load of mental health disorders, the presence of anxiety disorders and co-morbid mental health disorders are more significant among women. Results also indicated a significant presence of violence in the lives of both men and women during early childhood and adolescence. During adulthood, women are more likely to be victims of intimate partner or marital violence whereas men tended to cumulate difficulties in social fields and especially in their professional lives. This significant burden of adversity creates a number of difficulties which makes it complicated to isolate gambling activities. Clinicians might have difficulty detecting female gamblers during consultation, especially when they present with co-morbid mental health disorders and violence issues.     

Family Grief and Mental Health: A Systemic,Contextual and Compassionate Analysis

Although not always named, grief is central to the experience of mental illness — for people diagnosed, their families and their friends. Yet grief is almost absent from the literature and practice of mainstream psychiatry. This curious fact led to the writing of this article by two workers and a carer, with editorial and political advice from a consumer, as a small step in the direction of integrating perspectives of workers, carers and consumers. It examines the nature of grief associated with mental illness, its impact on family members, and why mainstream mental health services do not directly address it, with suggestions for some therapeutic ways to conceptualise and work with it.     

Mental health assessment of infants in foster care

Infants placed in foster care are at high risk for emotional and behavioral problems. Assessment of their mental health must account for their often-adverse life experiences prior to placement and the involvement of multiple systems that shape their lives in lieu of parents' authority. This article presents practice guidelines for infant mental health evaluations with consideration of legal requirements and the unique issues conferred by foster care.     

Who Cares Wins? Women,Caring and Disability

This article is an attempt to open up some of the unexplored issues in the 'carer's debate'. The interest in carers started receiving Government funding in the early 1970s as a response to community care policies. It also received interest from carers themselves and from feminist researchers concerned with the position of women in the family and the labour market. However, in wanting to show the difficult and often unrecognised work of the carer, the debate, in both academic and popular presentation, has often emphasised the public's perception of disabled people as passive, helpless and demanding. Feminist research on carers, it is argued, has ignored women who may need care and the principle of the 'personal is political' has failed to identify with the lives of disabled people. It is both unhelpful and unproductive to polarise the needs of disabled people and their carers and treat them as if they are mutually exclusive. We need research which does not alienate disabled people by defining concepts like rights, independence and power in ways which exclude, making disabled people the problem rather than the focus of the research. We need to move forward in the debate, making sure that we give a voice to all those involved in the giving and receiving of personal care. The concept of citizenship with its association with universal human rights may be a way to look concurrently at these needs.     

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.