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.     

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.     

Comparison of specialist and mainstream programs for older carers of adults with intellectual disability: Considerations for service development

Older carers of adults with intellectual disabilities experience unique challenges. Outreach initiatives identify a high number who are unknown to support services and a case is made to proactively engage them to assist in future planning for their adult children. An earlier study by the authors suggested that, in Victoria, specialist case management programs for older carers occupied a unique place within the service system. The present paper discusses a study that further explored the functions of specialist programs for this group through a comparsion with a mainstream disability case-management program. Few differences were found, although mainstream programs did not undertake outreach and community education functions. Models that build on the capacity of mainstream case management or carer support programs to work with older carers and target outreach more effectively are discussed.     

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.     

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.     

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.     

My home, your workplace: people with physical disability negotiate their sexual health without crossing professional boundaries

This paper aims to describe research that examined the views of people with physical disability, living in Australia, of their sexual well-being needs from their own perspective. We explored the impact their sexual well-being needs had on their relationships with professional carers. A social model of disability was used to understand how sexual well-being is facilitated or denied in community care. We also explored whether clients' sexual well-being needs could be met without carers or clients 'crossing the line'. Our findings indicate the multiple ways that 'professional boundaries' were negotiated between clients and professional carers. The data show that the location of the 'line' changed, depending on a range of personal, social, economic and environmental factors. The data also show a gap between the sexual well-being needs of people living with a physical disability and the level of support provided at the social and organisational levels. Suggestions are made for research and practice directions.     

Caring at a distance: Learning and practice issues

Emphasis on support for informal carers focuses on those who provide, in the words of the Carers (Recognition and Services) Act 1995, 'substantial' and 'regular' care. Following research and policy, professional education has also developed interest in those who live with the people they support, such as co-resident spouses and children of all ages. This article considers those who probably do not define themselves as carers and are usually referred to as 'relatives' or 'family', living at a distance from an older relative. It explores their possible need for support as well as the form and level of their involvement in relation to care managed services. It describes key areas or events to draw out practice issues and concludes with a discussion of the extent to which care management can work with such relatives. In many ways caring at a distance forces an examination of what is meant by 'care' and who can legitimately claim this as an emotion or status. The rationale for such interest is therefore three-fold. If social workers and social work educators restrict the meaning and their definitions of carers to those who provide 'hands on' services, as part of the care package, they risk alienating relatives from the learning experience of students. In doing so they may neglect these highly valued supports of older people and may leave relatives distressed and disempowered by anxiety over their contract with social work agencies.     

'Normal' Life in a Hazardous World: How Adults with Moderate Learning Difficulties and Their Carers Cope with Risks and Dangers

Semi-structured interviews were conducted with 20 adults with moderate learning difficulties attending Adult Training Centres and with their informal carers. Interviews covered friendships, relationships with the opposite sex, leisure and independent living and were analysed using a grounded theory approach. Ways of dealing with hazards emerged as an important theme. Hazards could be seen as dangers to be avoided or as risks to be calculated and minimised. Adults and informal carers usually viewed hazards in a similar way but there were conflicts of view in some families. Treating hazards as dangers to be avoided appeared to be associated with professional or skilled manual social background and the presence of both parents in the household.     

Dependency and interdependency: the incomes of informal carers and the impact of social security

Consideration of the income and social security needs of informal carers has remained conspicuously absent from discussions about 'community care'. Similarly, carers have been more or less invisible in the development of social security policies. This paper reports on a study of the financial circumstances of a sample of working age carers, who were living with and providing substantial amounts of help and support to a disabled person in the same household. The study highlights first, the substantial work-related costs incurred by carers with full time employment; and second the financial dependency of carers without full time earnings, on their spouse, sibling or on the person being cared for. The implications of these findings are discussed in the light of recent developments in social security policies.     

Abused children and foster care—the need for specialist resources

Estimates vary on how many abused and neglected children are admitted to care and how many children in care are there because of abuse and neglect. Nevertheless, it is important to examine their special needs and the problems they present to carers. Although research findings are difficult to interpret, there is enough evidence to show that abused and neglected children in care have special needs in three particular areas: education, health and social behaviour. The evidence is available from research into children in care and research into child maltreatment. Children in care run the risk of disrupted educational careers; abused and neglected children have additional problems in school. Many children in care have a patchy and neglected medical history; abused and neglected children are seriously at risk of further ill-health. Abused and neglected children have been shown to have behaviour problems that jeopardize their relationships with peers and adults; they run the risk of placement breakdown. Foster care of abused and neglected children is a specialist and demanding task, requiring knowledge of, and sensitivity to special needs. Because many abused and neglected children return to their parents, foster carers also need to include the natural family in their task. High expectations of these foster carers, however, should not lead to exploitation but rather an enhancing of fostering assessment, preparation, support and training.     

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.     

Children with disabilities in out-of-home care: Perspectives on organisational collaborations

Many contemporary support services for children and young people (CYP) in out-of-home-care have adopted a collaborative approach to service provision in order to best meet the complex needs of clients. The purpose of this study was to gain a better understanding of the perceptions of Evolve Behaviour Support Services (EBSS) frontline and managerial staff delivering services to CYP in out-of-home-care with disability and complex behaviours regarding interagency/stakeholder collaboration. Views about the number and nature of collaborative partnerships, factors which facilitate or hinder effective relationships and advantages (including unintended benefits) of collaboration were sought. Qualitative interviews with 21 participants highlighted issues around: (1) general and agency/stakeholder specific issues and barriers, and (2) benefits of collaboration. The collaborative approach to service provision was seen as greatly enhancing the effectiveness of EBSS' response and ability to meet the range of CYP's complex needs, as well as having benefits for carers and service providers. Nevertheless, difficulties with collaboration were also encountered. Frequently identified challenges included reduced stakeholder engagement, differences in professional backgrounds and practice frameworks, unequal initiation of contact and follow-up, organisational disparities, communication and information sharing problems, frequent stakeholder turnover and geographical barriers in rural/remote areas.     

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.     

Promoting effective working with parents with learning disabilities

The children of parents with learning disabilities are increasingly coming to the attention of child protection and children in need services. The current framework within which services are delivered identi?es the need to work cooperatively both across agencies and with parents themselves. The decisions taken by practitioners in the course of their assessment and support work should be in?uenced by a recognition of where the risks to this group of children lie and which factors are most likely to be associated with positive outcomes. This paper outlines risks to children associated with the parents' dif?culty in accessing appropriate antenatal care and the risk of developmental delay arising from both genetic and environmental in?uences. This group of children are also more likely to experience behaviour problems and language delay. Research has indicated a risk of neglect, but abuse, where it does occur, is more likely to be associated with partners or relatives. It is also clear that some children are more at risk than others, and intellectually able children, as well as those with high levels of dependency, may be the most vulnerable. Risks can be reduced when parents have access to good family and social support networks and professional support which is acceptable to them. Maintaining a small family size can also be helpful. If parents have had positive childhood emotional experiences, their chances of successful parenting are increased. Copyright © 2004 John Wiley & Sons, Ltd.     

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.     

Multiple Co-occurring Behaviours among Gamblers in Treatment: Implications and Assessment

A substantial portion of gamblers in treatment may have co-occurring mental health disorders including substance use disorders, especially alcohol dependency, personality disorders, affective disorders, anxiety disorders and impulse control disorders. Co-occurring mental health disorders affect treatment seeking, the treatment process and its outcome, quality of life and functioning in many mental health disorders. Participants in this study were 78 adults enrolled in state-supported out-patient services for pathological gambling and current Gamblers Anonymous attendees. The majority of participants (76.6%) had co-occurring behaviours; 55.8% had multiple co-occurring behaviours. Participants with multiple co-occurring behaviours were more likely to report that a co-occurring behaviour increased the severity of their gambling symptoms. A dose/response relationship between number of co-occurring behaviours and severity of gambling problems was found. Co-occurring behaviours can interact with gambling behaviour. Brief, validated screening instruments are available for screening and diagnosing co-occurring behaviours among gamblers presenting for treatment.     

One Year On: Perceptions of the Lasting Benefits of Involvement in a Parenting Support Programme

The availability of parenting support programmes has increased significantly within the UK over the last decade. Most evaluations of these programmes have focused on short‐term outcomes. The present study attempted to gain a longer term perspective by interviewing 20 carers more than 12 months after completing a group‐based programme. The results obtained using thematic analysis showed that the majority of participants felt the programme had had lasting effects on their ability to manage their children's behaviour and empowered them as adults. The key themes to emerge in the interviews were: the maintenance of parenting skills, the need for perseverance, strengthening of support networks and encouragement for further provision of programmes. It is argued that evaluation of support programmes should focus on more than parenting skills by assessing their impact on participants’ wider lives.     

Measuring outcomes in family support services (a case study using respite care)

Measuring outcomes in family support services is a relatively new area of social research. This study aimed to explore the use of respite care (brief planned periods away from home with the same carers over several months) as a family support service to help prevent long term family breakdown. It studied the service from the perspectives of all those involved in it—social workers, carers, parents and children–and was funded by the UK Department of Health as part of a series of studies commissioned to explore the implementation of the English Children Act law and theory.     

Levels of burden and satisfaction among Spanish foster carers

The aim of this study was to analyse the levels of burden and satisfaction among foster families in Spain, as well as the relationships between these variables and characteristics of the foster children and their carers. Participants were 86 foster families (comprising 71 foster fathers and 86 foster mothers) and the 104 children who they were fostering (56 boys and 48 girls). The instruments used were the Zarit Burden Interview and a questionnaire on foster carers' satisfaction with the preparation and support they had received. The results revealed low levels of burden among the families. Levels of burden were directly correlated with the amount of time the children had spent in residential care and with the age of foster fathers, and inversely correlated with how long the child had been with the current foster family. Higher levels of burden were reported by carers whose foster child was academically delayed. Regarding satisfaction, the highest ratings corresponded to items referring to the work of professionals, while the lowest were given for items concerning the information that foster families had received about the child's personality and the material and financial support available to them. The implications of the findings for professional practice are discussed.