Family carers' views of services for people with learning disabilities from Black and minority ethnic groups: a qualitative study of 30 families in a south London borough

In 2001, the UK Government identified the widespread neglect of the needs of people with learning disabilities from Black and minority ethnic communities. In this qualitative study informal interviews were held with 30 family carers of adults with learning disabilities from Black and minority ethnic communities. Their views were sought regarding services received and services needed, and cultural or communication barriers faced in accessing appropriate services. The study showed that although carers were largely satisfied with services actually received, service provision was highly inadequate and ineffective. Even very elderly and ill carers and those caring for people with severe disabilities received little support. Social worker support was negligible, and future planning rare. It is clear that the needs of carers from Black and minority ethnic communities are not being met. The situation would be considerably eased by adequate social worker support. Stereotypes of supportive family networks, (especially regarding south Asian families) proved to be unfounded.     

Assessment as the Site of Power: A Bourdieusian Interrogation of Service User and Carer Involvement in the Assessments of Social Work Students

The centrality of service user and carer involvement in social work education in England is now well established, both in policy and practice. However, research evidence suggests their involvement in student assessments is underdeveloped and under researched. This study focused on the positioning of service users and carers in relation to other stakeholders involved in the assessments of social work students in England. Using narrative research methodology, 21 participants, including service users, carers, social work students, social work employers and social work educators, were offered a semi-structured individual interview. Participants’ narratives revealed different power relations among those involved in social work students’ assessments and a lack of confidence among service users and carers in making failed assessment recommendations. The paper concludes by arguing the case for social work educators and service user organisations to provide joint training to support service users and carers in their role as assessors of social work students.     

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.     

Dementia Patients’ Transition to Residential Aged Care: Carers’ and Social Workers’ Experiences

Many people with dementia eventually require residential aged care, frequently preceded by a hospital admission. Family carers often find the process challenging and disempowering, as they are expected to move their family member to residential aged care quickly. This article reports on findings from a small Australian qualitative study focusing on the provision of information, support and resources, and discusses the findings in relation to person-centred care and critical social work. Social workers completed an online survey and participated in focus groups, and carers were interviewed. The research found that carers valued the information, support, and resources provided by social workers and other hospital staff. They needed time to adjust to the dementia diagnosis and wanted a supportive person to talk to about the written information. The social workers wanted an improved approach to the preparation and communication of information, and a more consistent approach to family meetings.     

The Caring Experience: Learning about Community Care through Spending 24 Hours with People Who Use Services and Family Carers

This paper describes a teaching and learning initiative developed in a UK social work programme that has involved carers, service users, academic social work staff and practitioners. Post‐graduate student social workers spend 24 hours in agreed periods with family carers or people who use social work services. The paper explains the origins of this initiative, rooted in a model of service user and carer involvement established over a number of years within the social work programme at the University of Dundee, Scotland. The development of this teaching and learning method is outlined and an account is given by a family carer describing their experience of being involved in the programme. Findings from the evaluation of this first year of operation are reported.     

Promises and Pitfalls: Involving Service Users and Carers in Social Work Manager Education

Partnership working occupies an increasing amount of social work managers' time and budget, requiring skills and abilities not always developed previously within social work programmes. Much discussion around partnership working centres on building collaborative inter-agency and inter-professional relationships with less emphasis on the need to ensure good working relationships with service users and carers, despite their being the ultimate recipients of the process. This article explores efforts to develop a focus on service users and carers within a module for social work managers as part of post-qualifying (PQ) social work education. It documents a process where, initially, service users and carers provided personal testimonies of being recipients of services and then subsequently occupied more authoritative roles within teaching, to the current position when they are again less actively involved.

In describing these developments it explores possible reasons why involving service users and carers within this module has proved challenging. The article acknowledges that there is relatively limited literature about the involvement of service users and carers in PQ education. It suggests that lessons learned from involving service users and carers in qualifying social work training cannot directly be transposed to the post-qualifying context.     

Engaging with Disability Services: Experiences of Families from Chinese Backgrounds in Sydney

People from Chinese backgrounds remain underrepresented in disability service use. This paper explores family experiences of using child disability support services to understand how migration and their cultural expectations about disability and service affect the way they use services. Qualitative semistructured interviews were conducted with 13 family carers in Sydney. They were striving to gain good support for their child from formal services. However, most of them were reluctant to express any dissatisfaction to service providers, which meant that assertively requesting different support was difficult and culturally inappropriate. In response, service providers can design nonconfrontational ways to elicit this vital information and support families to gain experience tackling conflict.     

Building Capacity for Service User and Carer Involvement in Social Work Education

Requirements set out for the social work degree and post‐qualifying framework specify the involvement of service users and carers on a number of levels. Research indicates that service user and carer involvement can benefit students, professionals and service users and carers themselves. To keep up with demands placed on service users and carers by higher education institutions and other social work bodies, the issue of capacity needs to be addressed. This paper describes a programme (Getting Involved) designed by Skills for Care to build capacity to participate among service users and carers new to social work education. It describes the experience of piloting the programme in Dorset by a team at Bournemouth University consisting of service users and carers and staff from the Centre for Post‐Qualifying Social Work. Getting Involved is a welcome development and the outcomes of the pilot have been extremely positive for all involved. The process of undertaking and evaluating the pilot raised issues concerning setting up programmes, project management, service users and carers as co‐researchers and sustainability. These are discussed in terms of our experience and how they link with the literature. Lessons learnt and implications for similar work in the future are highlighted.     

Austerity and the lives of people with learning disabilities. A thematic synthesis of current literature

Abstract

The Financial Crisis of 2008 resulted in many western economies implementing cuts in health and social care. This systematic review provides a holistic picture of the impact of austerity policy on the lives of people with learning disabilities (LD) and the collateral effects on the people who support them. Our review suggests that in the current climate of economic austerity, available funding to support people with LD is no longer aligned to their care needs. Cuts in disability services have adversely affected the well-being both of people with LD and their informal carers. Individuals with LD have lost social support and are experiencing increased social isolation. Heightened demands on family carers’ time have negatively influenced their wider roles, including parental functioning, and labour market participation. Our review provides the foundations for further discourse and research on the effects of austerity on people with LD and their family carers.     

Paradoxes, locations and the need for social coherence: a qualitative study of living with a learning difficulty

Policy rhetoric over recent decades has promoted social inclusion of the more vulnerable sectors of society, such as people with learning difficulties. This study aimed to describe the experiences of people who live with learning difficulties in order to inform local service development. Thirty-five people with a learning difficulty and/or a family member were interviewed. A model of social coherence was developed that moves beyond the self-limiting debates about social inclusion and exclusion. It is underpinned by a sense of location for the person with a disability in relation to services and carers, family and community, dependency and risk, temporality and space, events, control and society. Key recommendations are for services to know the individual and his/her family; to be responsive to individual needs; to enhance the capacity of families and communities to support people with difficulty in learning; and to help these people to feel more valued.     

Developing Responsive Preventative Practices: Key Messages from Children's and Families’ Experiences of the Children's Fund

As part of the prevention and social inclusion agenda, the Children's Fund, set up in 2000, has developed preventative services for children at risk of social exclusion. Drawing on a large qualitative dataset of interviews conducted in 2004/05 with children, young people and their parents/carers who accessed Children Fund services, this article analyses key practices and approaches valued by children and parents. These included: specialist support tailored to individual support needs, family‐oriented approaches, trusting relationships with service providers, multi‐agency approaches and sustainability of services. Finally, the article draws out key lessons for the future development of preventative services.     

Telling it like it was. Audio-taping stories told by mental health service users and carers

This paper begins by claiming that the telling and hearing of stories is intrinsic to the social work task. Examples of the value of hearing stories in a variety of social work roles are provided, as are examples of the theoretical underpinnings which substantiate the importance of enabling service users and carers to tell their stories. The main focus of the paper is on relating how audio-taping the experiences of service users and carers evolved as part of the author's work. With the permission of those interviewed, examples are quoted from accounts of three different family members attempting to deal with a relative's progressive deterioration into severe dementia. These accounts are followed by the memories of a woman who took an overdose and was subsequently ‘ectioned’ under The Mental Health Act 1983. An interview with two parents attempting to respond to the needs of their schizophrenic son is discussed. Some of the unexpected positive repercussions of recording interviews with these service users are described and some cautions are also highlighted. The paper concludes with suggestions of how audio-taping the stories of service users can be used to benefit social workers engaged in various aspects of social work today.     

The life cycle and support networks of families with a person with a learning difficulty

This paper presents data from semi-structured interviews with 190 families enabling comparisons across the life cycle of problems faced by carers of children and adults with learning difficulties, the informal support received and support from the statutory services. The size of the kin support network described was inversely related to the number of marked behaviour problems. Age, social class and degree of handicap were all found to be associated with different expectations about services and services received. Frequency of professional visits appeared to relate more to dependency levels and age than to numbers of behavioural problems. One implication of these trends was a marked service deficit for carers of adults with either high levels of dependency or challenging behaviour. Two groups of carers were particularly vulnerable-carers of adolescents and carers of individuals aged 40 years or over. The implications for professional practice are discussed.     

The Fount of All Knowledge: Training Required to Involve Service Users and Carers in Health and Social Care Education and Training

A modified Delphi study was carried out in order to obtain consensus regarding the content of a university training course to involve service users and carers at all stages of the health and social care educational process within a higher education environment. Telephone interviews were carried out with service users and carers, educationalists and leaders in the field of service user and carer involvement to generate curriculum ideas. A questionnaire was developed from their responses and sent to a purposive sample of 65 people (24 service users and carers, 28 health and social care educationalists and 13 leaders in the field of service user and carer involvement). Fifty‐five statements were generated with consensus being reached on 46 (84%) statements. Mismatches between service users and carers, educationalists and leaders in the field were explored. Key themes to be included in the curriculum were identified. This paper demonstrates that the best training is not imposed upon service users and carers by academics or others who think they know best; rather, that service users and carers themselves can play a leading role in identifying their training needs and devising strategies to ensure these needs are effectively met.     

‘Providing a Link with the Real World’: Learning from the Student Experience of Service User and Carer Involvement in Social Work Education

Social work has long placed an emphasis on involving users and carers in the education of practitioners, an emphasis driven by service users and carers themselves, the value base of social work, and by policy and legislation from successive governments and regulatory bodies. Recent changes in regulation and professional standards in social work suggest a continuing commitment to service user and carer involvement. This paper argues that in order to ensure a sustainable commitment, there needs to be greater evidence of the value and purpose of such involvement. Whilst there is a considerable body of literature on this issue in social work education, little focus is on any impact on current and future practice of social work students. The paper discusses a research project addressing this issue from the perspective of social work students. Findings suggest that the involvement of service users and carers in their training was perceived by students as overwhelmingly positive, should be enhanced and that they believed that these experiences were taken forward in their practice. The paper also identifies key points that could inform best educational practice.     

Editorial

In recent years the imperative to involve service users and carers at every level of care, service and policy development has been extended to include involving users and carers in the training of health and social care professionals. Guidance on how this is to be achieved in practice is, however, limited. This paper describes work undertaken to explore how an Approved Social Work Programme in the north of England could involve service users and carers more fully and develop an integrated approach to service user and carer involvement in this and other social work programmes. Following a review of the literature in this area, the results of a series of meetings with individual and groups of service users and carers are presented, together with a survey of ASW programmes. It then goes on to consider the implications for service user and carer involvement in the new social work degree.     

The intersection of employment and care: evidence from a UK case study

Working carers are a key focus of UK policies on health and social care and employment. Complementing national and European evidence, this paper presents a local case study of working carers. It draws on data from a county-wide survey containing a module on caring. Data were primarily categorical and were analysed using SPSS. Three quarters of all carers who responded to the survey were of working age: two thirds were employed and one third had been employed previously. The majority of working carers were mid-life extra-resident women. Over half of cared for relatives were elderly parents/in law; ‘physical illness’ was the primary cause of dependency. A tenth provided intensive care and half reported that caring adversely affected their health. Both were triggers for leaving employment. Two thirds of households received input from services and/or friends/family; being a co-resident carer appeared to mitigate against service allocation. Four issues were identified as pivotal to facilitating employment: access to advice and information, the availability of a matrix of affordable good-quality social-care services, ‘joined up’ needs assessment of the carer and cared for person, and employers identifying carers in their workforce. Europe's ageing profile underscores the study's timeliness.     

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.     

Learning from service users’ involvement: a research about changing stigmatizing attitudes in social work students

Abstract

Stigmatizing attitudes can create barriers to forming partnership with service users and to developing people’s empowerment. So, social work education must help students overcome their stigmatizing attitudes. A useful strategy for bringing about changes is service users’ and carers’ involvement in social work education, providing students with direct exposure to stigmatized people in roles that emphasize their humanity and strengths, rather than their deficits. The present study assessed the impact of a one-day meeting with service users and carers members of self-help and mutual-aid groups on freshman social work students. Students completed an adapted version of Attitudes to Mental Illness Questionnaire before and after the meeting, and answered several qualitative questions. Data comparisons suggest that after face-to-face contact with service users and carers, social work students showed reduced stigmatizing attitudes. Implications for further research and social work education are discussed.     

Informal care and support for carers in Sweden: patterns of service receipt among informal caregivers and care recipients

This study describes and analyses the kinds of support received by different categories of informal carers, and the kinds of help that care recipients receive in addition to that provided by various categories of carers. Data were collected in a Swedish county in 2000, by means of telephone interviews. The net sample consisted of 2,697 individuals 18–84 years old, and the response rate was 61%. The results showed that relatively few carers in any care category received any kind of support aimed directly at them as carers. The most widespread form of support received by providers of personal care was relief services. Those most likely to be receiving care from the public care system were people also receiving personal care from an informal caregiver. Nevertheless, the majority of those receiving personal care from an informal carer did not receive any help from the public care system or from voluntary organizations or for-profit agencies. These results indicate that social policy and social work need to clarify the aims of the services they provide. They also need to take the needs of both caregivers and recipients into account when discussing support systems.