Older Carers of Adults with a Learning Disability Confront the Future: Issues and Preferences in Planning

The Valuing People White Paper (Department of Health, 2001)requires services to secure a plan for all service-users withlearning disabilities living with older carers and promisesthem and their families more choice and control over how andwhere they live. This paper examines the views of the oldercarers (aged over seventy) of sixty-two adults with a learningdisability about planning for the future. Fifty-six took partin interviews in their own homes and six completed a questionnaire.All carers were white and recruited from one local authorityin response to the requirements of the White Paper. Findingsindicate that a significant proportion (thirty-four—55per cent) is either not ready or is unwilling to make futureplans. Barriers to planning include a perceived lack of needdue to the existence of two carers, a lack of awareness of timescalesinvolved in securing housing, difficulties in letting go, alack of confidence in available housing options, and the existenceof mutually supportive relationships. The findings show a needfor a proactive approach to information and support provisionto enable these families to work through a process of makingplans for the future. This is essential to prevent the needfor emergency placements in response to crisis and in turn toensure that adults with learning disabilities have genuine choiceand involvement in how and where they live.     

Adults with a Learning Disability Living with Elderly Carers Talk about Planning for the Future: Aspirations and Concerns

The majority of adults with a learning disability live withfamily carers, many of whom are ageing and have support needsof their own. Planning for the future thus becomes the key topreventing a crisis situation when family care is no longerviable because of death or ill health. Existing knowledge andpractice are largely based upon the perspective of professionalsand carers. This study explores the views, aspirations and concernsof adults with a learning disability, about living at home andplanning for the future. Findings show that participants werevery aware of the need for alternative housing or support inthe future and had clear preferences about their future options.However, they also showed extensive concern for their familycarers and this often impacted on their willingness to planfor the future or to move to alternative housing. Their demonstrableawareness of the inevitable death or ill health of family carers,and willingness to engage with the implications, emphasize theimportance of involving adults with a learning disability inplanning for their future, as well as providing them with bereavementsupport.     

Older family-carers' views on the future accommodation needs of relatives who have an intellectual disability

Over the past 20 years, research across the developed world has identified trends towards ageing of the population with learning/intellectual disability. Alongside is the recognition that family-carers are also ageing. Recently, the UK government has sought to identify the future housing needs of dependents with intellectual disability residing with older carers. Consequentially, a city council commissioned this qualitative study involving 28 older carers. The findings indicate a need for information about housing options, a lack of practical support and feelings of marginalisation. The conclusions suggest key roles for social services in providing proactive support and advice to family-carers, and a greater degree of joint working between social services departments and housing agencies. These resonate with similar international studies and provide the opportunity to focus on the perspectives of family-carers. Their experiences are real, and if welfare professionals are to work with people with intellectual disability and their family-carers, acknowledging their views is essential.     

Enabling Adults with Learning Disabilities to Articulate their Housing Needs

Correspondence to Dr Alex McGlaughlin, Department of Social Sciences, The Nottingham Trent University, Burton Street, Nottingham NG1 4BU, UK. E-mail: alex.mcglaughlin{at} ntu.ac.uk Summary This study is about involving adults with learning disabilitiesin service planning by asking them to articulate their own needsin relation to housing. It also identifies some of the barriersto meeting the housing needs of this group. The views expressedindicate that ordinary housing with small numbers is the preference,and that appropriate support is highly valued. This suggestsa need for housing of a supported living model or similar. Theservice users in this study were clearly able to verbalize theirpreferences as well as to think through potential options. However,there is also clear evidence that they feel powerless in makingchoices, with decisions being taken on their behalf by professionalsand carers. This demonstrates the need for a cultural shiftwhereby the voices of adults with learning disabilities areheard and acted upon.     

Traditional kinship foster care in northern Ghana: the experiences and views of children, carers and adults in Tamale

Surveys were employed to explore the experiences of children in care and their carers about traditional fostering. They also examined the perspectives of randomly selected adults in the community about the practice of traditional foster care in the Tamale area of northern Ghana. The 74 participants responded to closed- and open-ended interview questions about traditional foster care. Frequencies and thematic grouping of qualitative responses showed that the need to keep family ties alive was the key reason for placement of children with family and kin. Majority of the children expressed satisfaction with living in foster care, even though they had experienced physical and emotional abuse and intimidation. Although most carers were not formally employed and had little personal income, they were positive about having the care role, but faced challenges in providing for many children in a difficult economic situation. The report highlights the role of reciprocity, altruistic and socio-cultural factors in quality of care, and the potential for the traditional kinship foster care to provide suitable avenues of placement for children as recommended by the Ghana child rights law. It also identifies the need for education for carers around children's needs and Ghana's child rights law.     

“Unexpected and Distressing”: Understanding and Improving the Experience of Transferring Palliative Care Inpatients to Residential Care

The survival of patients with advanced cancer, coupled with the increased presence of end-stage chronic illnesses in an aging population, is leading to a demand in palliative care. Due to the ongoing need for acute-pain and symptom control in hospice/palliative care units, few are able to offer long-stay admission for those whose symptoms have stabilized. When a patient no longer requires specialist palliative care services, transfer from an inpatient palliative care facility may then be necessary. A core component of the role of palliative-care social workers involves working with patients and their families/carers when the care pathway shifts and the option of residential aged care facility (RACF) needs to be considered. This research explored several issues, including the impact of this transition on the patient and their families and on the interdisciplinary health care team treating the patient. An investigation was undertaken to identify concerns and barriers regarding the transition from hospice care to RACF and opportunities were highlighted to improve clinical practice in this area. A tripartite approach was adopted conducting face-to-face interviews with patients, their families/carers, and health care professionals. Members of the interdisciplinary team were interviewed and social workers working in similar inpatient palliative-care facilities undertook telephone interviews to gauge their experiences. A thematic analysis discerned a number of themes highlighting the impact of this transition on key stakeholders and incorporated recommendations to improve or best manage this process. The research has highlighted the difficulties that patients/families encounter in this transition, as well as the emphases of protecting the integrity of the patient and family. This is achieved by holding open and ongoing dialogue, particularly through family meetings and working in collaboration with the patient, the family, and the team. Understanding the experience and impact of this transition on key stakeholders is helpful in building up a knowledge base and to ensure a more effective relationship occurs. This research incorporated the voices of terminally ill patients, families, and members of the health care team in order to understand their views and recommendations for best managing the transition from a hospice/inpatient palliative-care facility to a RACF. This enables their input to have some real impetus in clinical practice and service delivery.     

Nonfamilial kinship carers—Who are they and what support do they need to nurture children?

There is a growing body of literature about kinship care in the Western world; however, much of it focuses on grandparent care. A lesser known aspect of kinship care is the care of children by nonrelatives known to the child or their family. What little research exists about this group suggests that such placements are less stable than familial kinship care. This article reports a research study in Victoria, Australia, that explored nonfamilial kinship care through analysis of administrative data, interviews with young people and carers, and focus groups with kinship care support workers. It emerged that current administrative databases are not yet able to reliably identify the carer relationship, and thus the extent of such care arrangements cannot accurately be determined. Interviews and focus groups revealed that nonfamilial kinship care is diverse and qualitatively different from familial kinship care, bearing some similarities to foster care yet managed very differently. It is suggested that policymakers need to pay more attention to conceptualizing nonfamilial kinship care within kinship care policy frameworks and that greater attention is needed to the individual support needs of children in such placements and their carers.     

Admission to Nursing Homes in Taiwan

The population of Taiwan is facing a radical ageing process. A proportion of the growing number of people aged 65 and over is expected to need nursing home care. This research concerns the family context of decision‐making in the process of admission to a nursing home in Taiwan. Employing survey data from interviews with elderly people in nursing homes (235 interviews) and their carers/key families (265 interviews), the factors affecting their views about admission were explored. Bivariate analysis and a logistic regression model were also used to examine perceptions of alternatives to nursing home care among family members with elderly relatives in nursing homes. Most elderly people in Taiwan are cared for in their own homes by their families but, in some circumstances, entry to a nursing home seemed inevitable. This research found that the decisions were taken mainly within a family context. The adult children of the elderly people, carers/key families’ preferences and the availability of carers influenced the decision. Apart from the important need factors of elders, families’ views about alternatives to nursing homes were significantly influenced by their preferences. This study has important implications for long‐term care in Taiwan. It is hoped that this will be needs‐led, both by elderly people and their families.     

The long-term consequences of youth housing for childbearing and higher education

The lack of housing in areas where young adults have greater opportunities to study and get work complicates young adults’ entry into the adulthood. Difficulties in accessing housing may therefore delay childbearing and may negatively have an effect on education opportunities. To increase housing accessibility, some municipalities have earmarked apartments for young adults. These “youth dwellings” are criticized for being small and not necessarily facilitating family formation and fertility, better suiting students’ needs. We have in this paper compared the long-term pattern of childbearing and education for young adults that entered their housing market through small cheap youth housing with those youngsters that received a rental apartment from the ordinary housing stock. To be able to draw the conclusion that differences in fertility and educational pattern between these two groups comes from the different housing situation and not from differences in in preferences when it comes to childbearing or individual prerequisites for higher education, we have used a geocoded data and information on the individual’s family background as well as a matching technique to create a comparison group that are similar to the treatment group in several aspects. The present results indicate that building affordable housing that is small and space efficient is sufficient and positive if the aim is to promote higher education. Affordable housing is on the other hand not enough to promote childbearing, instead, it seems to inhibit childbearing until there is a possibility of moving on in the housing career. Our result also indicates that the next step need not necessarily be homeownership, as earlier research has indicated. Entering the housing market via youth housing and then being able to move on to rental accommodation in the ordinary housing market also seems to have a positive effect on overall childbearing, although moving to cooperative housing or owned housing has an even larger effect.     

The significance of a secure base: a psychosocial model of long-term foster care

ABSTRACT Long‐term foster care has been a much neglected area of social work practice and research. Yet there are obvious challenges that need to be understood when building a family for life in foster care. Is it possible for foster families, where there are no biological or legal ties between carers and children, to provide care, concern and family membership not only through childhood but also into adult life? The study on which this paper is based set out to explore that question by investigating the experiences of 40 adults, aged 18–30, who grew up in foster families. Qualitative interviews were conducted, transcribed and analysed. Theoretical frameworks from attachment and resilience were brought together with concepts such as ‘belonging’ and ‘family membership’ to make sense of the narratives provided. An integrated and dynamic psychosocial model of long‐term foster care was developed, which emphasizes the significance of a secure base and has some important implications for practice.     

The Right to Take Risks: Alcohol and Older People

This paper examines policy and practice regarding the purchase of alcohol for older clients of home carers in three local authorities in the Greater London area. Data were gathered from interviews with home carers and their managers, focus group discussions, and a postal survey. None of the local authorities had a written policy or written guidance on alcohol purchase or on appropriate responses to the identification of problematic drinking in older clients. The findings illustrate the problem of balancing "rights" and "risks" within a philosophy of community care which emphasizes client choice and autonomy, and show how policy and practice are "tailored" by local contexts. It is suggested that both home carers and other domiciliary workers, as well as their older clients, could benefit from a clear code of practice regarding responses to alcohol consumption and problematic drinking by older people.     

Families of adult people with disability: Their experience in the use of services run by social cooperatives in Italy

Social cooperation has historically played a pivotal role in developing socio‐educational services for people with disability, thereby contributing to counteracting the social isolation often associated with this condition. Using a mixed‐method methodology, this study maps the diversity of perspectives on how the use of disability‐related services run by social cooperatives impacts on and becomes meaningful to family life. One hundred twenty‐nine interviews with family members of adults with different kinds of disability were studied using emotional textual analysis. It provides a multi‐dimensional model to read and map the multiplicity of emotional meanings related to disability and the use of services, shedding light on key diversities in how family members emotionally make sense of care and support. The results reveal the importance of supporting family‐carers on two main issues: accessing a less passive representation of their relative with disability; and being able to test and acknowledge limits without succumbing to a sense of powerlessness.     

Growing up with a parent who has a chronic mental illness: one child's perspective

This paper describes a growing understanding of one adolescent boy's experience of living with a parent with a chronic mental illness. The way in which services were organized and delivered to address the needs of either adults or children made it difficult to comprehend the impact of parental psychiatric disorder on the family as a whole. The case study illustrates the problems for the 'not-noticed child', the process of internalization and enmeshment that affected his internal world, his relationships with others, and his development in adolescence. The need for all professionals to focus on interactive processes both within the family and in the professional network is emphasized, as is the importance of collaborative work.     

Fear,Defensive Strategies and Caring for Cognitively Impaired Family Members

One topic rarely addressed in the literature on older adults and interpersonal violence is the violence that can be experienced by family carers in relationship with a person living with cognitive impairment. This violence tends to remain hidden and is rarely framed as intimate partner violence. We examine how situations of intimidation and violence invoked fear in family carers and how they interpreted and reacted to these circum- stances. Interview and diary data were collected from family members who had previously or were currently experiencing some form of aggression in caring for someone with cognitive impairment or dementia. Drawing on discussions of fear and applying the analytic lens of defensive strategies, we explore how these carers responded to situations of intimidation and violence.     

The challenges presented by parental mental illness and the potential of a whole‐family intervention to improve outcomes for families

Parental mental illness (PMI) can negatively affect the lives of all family members, and there is acknowledged need to work with family and social contexts to promote recovery. However, programmes undertaking such work remain rare and knowledge concerning mechanisms through which PMI impacts families and through which recovery might be achieved is underdeveloped. This paper outlines a new family intervention programme and presents evidence from focus groups with 16 professionals into their experiences of work with families with PMI. Evidence suggests that interactional effects of PMI, family communication and family relationships are key to understanding its impacts, but professionals are liable to struggle to engage with these due to concerns over stigma, lack of skills and low confidence. Positive impacts on practice were achieved through raising awareness of the whole‐family context in relation to PMI, building confidence to raise and engage with PMI and the provision of structured tools for use with families. Positive impacts on the lives of family members were then achieved by professionals in relation to symptoms for the ill parent, the burden on children and overall family well‐being, strongly mediated through improved family communication, understanding and relationships. Implications for policy and practice are considered.     

Change and Adaptation in Families with Young Carers

Using grounded theory methodology, members of nine families with 'young carers' were interviewed to explore their experiences of caring. A dynamic theory of change and adaptation emerged in relation to changes in who cares within families, in external support and in the attitudes of young carers towards caring. Adaptations included becoming used to the way life is, knowing how to care, balancing and trading off, rewarding care, and anticipating future adaptations. A model has been developed to offer an explanation of factors which influence young caring in families. These include family expectations about caring; who is available to care; the willingness and capability of young carers to help; and the degree of choice or obligation they experience. Formal and informal support services from outside the family, and environmental adaptations, can reduce the amount of family caregiving required, increase choice and contribute to balancing life for carers.     

Family budgets and public money: spending fostering payments

In this second of two papers based on a study of payment issues within foster care, the focus is on expenditure. It is argued that the hybrid public/private nature of fostering gives rise to contradictory pressures for carers, including the status of maintenance payments as both part of family budgets and a form of delegated public expenditure. For example, carers are required in principle both to spend fixed amounts upon foster children and to treat them in like fashion to their own children. In this paper, the issue of ‘like treatment’ is explored, along with the significance of payment for ‘children who foster’ and for relationships between carers and foster children. Also examined are the challenges presented by differences between carers’ material circumstances and those of birth families, especially when reunification is planned. Overall, the paper seeks to show how the handling of expenditure becomes closely entwined with inter‐personal dynamics within foster care.     

Children forever: The search for origins among Chilean adults who were adopted

There has been a global increase in the number of adults who were adopted 1 1 To make the text more readable, we use the term “adult adoptee” rather than our preferred term “people who were adopted.” We prefer the latter term because it does captures our understanding that adoption is a practice and a life experience and not necessarily a permanent fixture of the identities of people who were adopted.
searching for their origins. This trend has promoted the interest of social sciences researchers, as well as carry out the obligations of states to provide specialized services. In this article, we present some results from the first qualitative study that explores the experiences of some Chilean adults who were adopted and searched for their origins in Chile through the National Service of Minor's Search for Origins Program. The narratives of the participants show that, in spite of legislative changes, a series of barriers and contradictions continue to exist, which make it difficult to guarantee the right to know one's origins. The legal and technical frameworks and practices analysed show how difficult it is to dismantle the “clean break” principle. They also highlight the persistence of the image of adoptees as “minors” who need the “protection” of their parents or professionals. We discuss the different challenges to be considered by researchers, practitioners, and policy‐makers involved in adoption policies and practices.     

Sheltered Housing and Community

This paper considers the role of sheltered housing following the introduction of new community care arrangements in 1993 and examines the continuing uncertainty about its exact role as community care continues to develop. It reports on a study conducted in Shropshire, using a postal survey and interviews with older people and service professionals. The study highlights the importance of sheltered housing for older people, particularly in relieving them of concerns about maintenance and repairs, social isolation and security. These factors were crucial for their overall peace of mind and quality of life. While only a small proportion of tenants received help under social services' community care arrangements, the additional support, monitoring and service coordination provided by wardens helped some of them to remain in sheltered housing when residential or nursing home care might otherwise have been necessary. Sheltered housing was overwhelmingly popular with older people — but their satisfaction was closely associated with the availability and quality of the warden service. Although sheltered housing is not currently in vogue in housing policy, the paper argues that it plays a vital role in local provision for older people and needs to be more closely integrated into community care policy, while at the same time preserving the characteristics that make it popular with its residents.