Professional Perspectives on Decision Making about the Long-term Care of Older People

With the increasing pressure on social and health care resources,professionals have to be more explicit in their decision makingregarding the long-term care of older people. This groundedtheory study used 19 focus groups and nine semi-structured interviews(99 staff in total) to explore professional perspectives onthis decision making. Focus group participants and intervieweescomprised care managers, social workers, consultant geriatricians,general medical practitioners, community nurses, home care managers,occupational therapists and hospital discharge support staff.The emerging themes spanned context, clients, families and services.Decisions were often prompted by a crisis, hindering professionalsseeking to make a measured assessment. Fear of burglary andassault, and the willingness and availability of family to helpwere major factors in decisions about living at home. Serviceavailability in terms of public funding for community care,the availability of home care workers and workload pressureson primary care services influenced decision ‘thresholds’regarding admission to institutional care. Assessment toolsdesigned to assist decision making about the long-term careof older people need to take into account the critical aspectsof individual fears and motivation, family support and the availabilityof publicly funded services as well as functional and medicalneeds.     

Advance Care Planning in the Delivery of Adult Protective Services

ABSTRACT

In ensuring the safety and protection of older adults from abuse and exploitation, adult protective services (APS) workers face a variety of situations involving serious illness and end-of-life conditions. Many older adults encountered in APS will present with one or more chronic conditions that may warrant discussion of advance care planning with clients and their families. This study surveyed APS workers (n = 508) in 21 states regarding encounters with end-of-life situations and the practice of future care planning. Results revealed that three-fourths of APS workers encounter clients with serious illnesses and about two-thirds do discuss planning in advance for care. More than one-half of the respondents indicated client incapacity and refusal to address future care needs as barriers to discussing planning in advance for care. Recommendations to enhance advance care planning among APS workers are discussed.     

Strengthening kinship families: scoping the provision of respite care in Australia

Kinship care is the fastest growing form of out‐of‐home care in Australia, as it is in many other countries. The Victorian Government's response has been to establish 18 programmes across the state to provide support to kinship families. The scoping project described here, based on interviews with key programme staff, explores the experiences of the new programmes in providing support, specifically respite care, to kinship families. It has produced a picture, based on qualitative and quantitative data, of how respite care is understood, the perceived respite needs of kinship families, how services are organized and provided, identified barriers to families accessing support, the effect of respite provision and what constitutes optimal practice. The findings establish a basis for a best practice model of service provision for this increasingly significant family type.     

“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.     

Residential care: an effective response to out‐of‐home children and young people?

The ever‐growing number of out‐of‐home children in Italy over the last decade has urged an assessment of the available care services. Although foster care is spreading rapidly, many young people are still housed in residential facilities. Reflection on residential care quality has intensified at both a national and an international level. This paper presents the results of a study on residential care facilities for children and young people in the region of Northern Italy (Lombardy). Four dimensions of ‘quality’ are considered: efficiency, effectiveness, participation in planning and intervention, and empowerment of children and their family relationships. The combined effects of these dimensions are defined as ‘relational quality’. The results show that residential care facilities are generally good, while Social Services resources often appear inadequate for interventions aimed at birth families (efficiency). The well‐being of children in residential care facilities is high, even if they tend to move from one facility to another, rarely returning to their birth family (effectiveness). The involvement of children and their families at different stages of the care path is limited (participative approach). Finally, the most critical element is the failure to properly involve birth families (empowerment).     

The proof of the pudding: What difference does multi‐agency working make to families with disabled children with complex health care needs?

More than 20 years of research with disabled children, young people and their families has highlighted the need for the different professionals and services that support them to work more closely together. The British policy and legal framework for ‘joined up working’ has never been stronger. However, there has been an assumption that multi‐ or inter‐agency working will inevitably be a ‘good thing’ for families. This paper discusses findings from a 3‐year research project which looked at both the process and impact of multi‐agency working on families with a disabled child with complex health care needs. Interviews with 25 parents and 18 children and young people who used six developed, multi‐agency services were carried out. Findings suggested that the services had made a big difference to the health care needs of disabled children but were less able to meet the wider needs of the child and the family – particularly in relation to social and emotional needs. Multi‐agency working appeared to make some positive, but not significant, differences to the lives of families.     

Staff-Family Relations and Institutional Care Policies

As institutional care providers increasingly recognize the importance of the family, the quality of staff-family relations has become a concern. This study investigated the relationship between selected facility care policies and staff-family relationships. Data secured from staff members and family members in rural nursing homes revealed a relationship between the family role that the care policy prescribed and the degree of staff-family integration. The study concluded that care policies viewing family members as clients will have positive consequences for staff and families and ultimately the residents.     

A comparison of state support for young people leaving care in Norway and Sweden: Differences within comparable welfare systems

The aim of this article is to account for and discuss support to young care leavers within the comparable welfare regimes of Norway and Sweden and to explore key differences between these 2 countries. This model implies that children and young people are included and entitled to support through being family members, not as independent actors in their own right. This makes young care leaver's transition from care to adulthood problematic—as they often do not have access to family support, they may be positioned in a vacuum where they are clients neither entitled to support from the child welfare system nor supported by their families of origin. In Norway, legislators and policymakers have agreed that care leavers need particular attention and targeted support, whereas in Sweden, there has been no such agreement. However, the Norwegian system of giving leaving care services is not strong enough to provide transition support to all care leavers, even if the legislation gives stronger protection than in Sweden. The article discusses the need for targeted measures of support for a successful care‐leaving process.     

Family-Centered Care

Abstract

Recent trends in medicine reflect an attempt to be more patient-centered and while this is progress from the disease- or provider-focused model familiar in healthcare, the experiences and contributions of family as caregivers continue to be overlooked in some settings. The family-centered care model, developed most notably in pediatrics, but emerging in HIV, cancer, and aging, is presented as a resource to increase family involvement at the end of life. In this paper, family-centered care is defined, caregiving trends including support needs of formal and informal caregivers are discussed, and barriers to family-centered services are identified. Reintroducing family into the focus of care at the end of life is the primary goal of this paper. The family-centered model of care offers an appropriate framework for understanding the value of family in end-of-life care and fits well with social work perspectives that understand individuals in the context of their family system and greater environment.     

The long arm of the welfare state shortened: Home help in Sweden

Old age care in Sweden expanded greatly in all areas in the 1960s and 1970s. In the 1980s, both institutional and in-home services have retreated. Little substitution between the two kinds of care can be observed. Cutbacks relative to demographic needs, and probably also to actual needs, have occurred, nationally and locally. Home help is analyzed as a metaphor for social services and welfare at large. The strategy has been to give priority to the frailest and oldest clients. Others often have to make do without any services. Also, current recipients of home help services now get different inputs: in the 1980s and earlier, 8 of 10 home help hours were used for homemaking (such as shopping, cooking, cleaning and laundry); in the 1990s about half is used for personal care of the clients.     

Early childhood services and support for vulnerable families: lessons from the Benevolent Society's Partnerships in Early Childhood program

Access to early childhood services is widely considered to be an important means of supporting vulnerable children and families. Yet the evidence that access to such services automatically makes a difference for vulnerable families is mixed at best. The growing presence of for‐profit early childhood services may have an impact on the sector's capacity to provide the enhanced education and care to those most likely to benefit. What are the current and future possibilities for early childhood services to benefit vulnerable children and families? What resources are required to build the capacity of early childhood settings in supporting vulnerable families, and are these likely to differ between for‐profit and not‐for‐profit settings? This paper will explore these questions using a Benevolent Society project, Partnerships in Early Childhood, funded through the Commonwealth's Stronger Families and Communities Strategy, Invest to Grow, as an illustrative case study. Researchers from the Social Policy Research Centre evaluated the first three years of the project, which involves a number of not‐for‐profit early education and care providers. The paper describes the implementation of PIEC as an attempt to improve the quality of early education and care services to vulnerable children, and lessons that can be drawn for the future of similar interventions. We conclude that time, support for staff and partnerships between different organisations appear to be critical for the success of these interventions, and that the capacity of for‐profit services to provide these resources deserves attention.     

Resettlement challenges faced by refugee claimant families in Montreal: lack of access to child care

Adult refugee claimants experience several well‐documented post‐migratory challenges. Little is known about the resettlement process for refugee claimant families with children. This study reports on 75 open‐ended, in‐depth interviews with refugee claimant families in Montreal about their resettlement challenges and their proposed solutions to them. These interviews were conducted with 33 dyads and triads of children and parents attending a paediatric hospital. Experiences accessing formal and informal child care in Montreal were addressed. Subsequently, a comparative policy analysis was conducted on residency eligibility criteria for child care subsidization. Twenty‐eight out of 39 parents (73%) report a lack of informal or formal child care and 15 out of 33 families (39%) propose improving access to formal child care services. They describe a lack of informal child care as a result of reduced social networks, and affordability as a barrier to formal child care services. Refugee claimants are not eligible for subsidized child care in Quebec. A comparative policy analysis within Canada and comparable countries reveals that this situation is not unique to Quebec. However, most provinces and European countries offer child care subsidies to refugee claimants. Refugee claimants should qualify for child care subsidies. Social workers and community organizations should consider their clients' child care needs in designing programmes and services.     

Foster Family Care for Frail Elderly

For the last 10 years, the development of cost-effective, community alternatives for chronically ill has been a serious concern of many service providers and policy-makers. The expanding of the elderly population has been well documented. In this state, projections show a need for an additional 1602 long-term care beds by the year 2000, almost double the current capacity. The state Medicaid Program is searching for ways to reduce the 50 million spent in 1982 for institutional long-term care. Already experiencing the shortage of long-term beds, hospitals have a chronic loss of revenue potential through the holding of non-acute patients in the hospital while waiting for a nursing home bed vacancy. At the 500 bed acute care hospital, 25-30 beds daily are occupied by nursing home wait-listed clients. The average wait-listed days per patient is 20.4. In September 1979, the hospital's department of social work began foster family care for elderly persons eligible for nursing home care. Foster families are extensively screened and trained for the severely dependent clients. The social worker and registered nurse team are closely involved in placements, developing and implementing an individualized written treatment plan to assure the clients quality of care. Data collected over the past three years clearly indicates that this setting provides cost-effective, quality care. Overall scoring on bathing, dressing, toileting, transfer, and continence, utilizing the KATZ Activity of Daily Living, shows that 71% of the clients improve after 3 months on placement. Although 45% of the clients are incontinent of bowel or urine at the time of placement, 33% make significant improvement to only occasional accidents. With 41% of the clients at placement requiring adaptive device and assistance for walking, 48% of the clients show functional improvements in walking. Most significant for continued survival of this type of care, the total program cost is half the cost of institutional care for these elderly clients. The paper will examine the multiple needs served through the program: the ill elderly person's need of a therapistic, caring environment; the hospital's need to curb loss of potential revenue; and the need of the Medicaid Program to contain costs. The paper also reviews client characteristics, foster family characteristics, quality assurance, and overall cost-effectiveness of the foster family model.     

Managing the Family: Productivity, Scheduling and the Male Veto

This paper argues that research, analysis and policy innovations focused on how households combine paid work with care responsibilities are driven to too great a degree by preconceptions of “the problem” that do not take sufficient account of how families themselves understand their work and care roles and the choices they are making. The evidence of 246 SOCCARE interviews across five European countries (Finland, France, Italy, Portugal and the UK) is that the variables that are conventionally accepted as having fundamental significance (family‐friendly policies and generous care services, flexible working hours, women's work–life preferences, family type, national labour markets, cultural differences) are less important than is often suggested. More important are time pressures and the idiosyncratic factors that constrain the work and care timetables that families are able to construct. We characterize these as “scheduling problems”. They occupied a large part of the accounts of their lives provided by our respondents and are a primary dimension within which their combinations of paid work and care responsibilities need to be understood. The difficulties our respondents faced in coordinating the work and care activities of their families bear a striking similarity to the problems described in the operations research literature on small businesses. Within the context of these scheduling problems a second important factor emerged: the preferences and behaviour of men who played a critical, though often passive, part in the construction of work and care timetables of the families. We characterize this effect as the “the male veto”.     

Children taken into care and custody and the ‘troubled families’ agenda in England

Children taken into care and custody are arguably the most vulnerable and problematic groups within the wider debate and responses developing to the ‘troubled families’ agenda in England. They represent what the state most wants to avoid when it intervenes in the life of a family. This paper is based on an analysis of the service involvement and needs of the 196 children taken into care or custody over a 3‐year period (2008–2011) in one city local authority in England. The research was undertaken to inform the response to prevention of entry into care and custody which was the original focus of the most intensive part of the troubled families programme in the city. Interviews with 10 senior professionals from a range of agencies involved in setting up this local programme, explored the way the emerging troubled families agenda was shaping ideas about the understanding of and response to the needs of these children and their families. Key findings of the study illustrate the range and complexity of need as well as the sequence and amount of agency involvement. Professionals were often critical of the thinking behind the troubled families agenda, but were positive and creative about new ways of working with these families.     

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.     

From Official Supervision to Self‐monitoring: Privatizing Supervision of Private Social Care Services in Finland

In October 2011, a new Act on Private Social Care Services came into force in Finland. The Act included a provision on a ‘self‐monitoring plan’. According to the provision, providers of private social care services are required to draw up a self‐monitoring plan and to follow its realization. The plan must be kept publicly on view so that clients and their relatives can also keep an eye on the realization of self‐monitoring. In this article, self‐monitoring is first explained and then briefly analyzed against the background of a wider theoretical discussion on accountability. It is argued that the introduction of client involvement in the supervision of private social care services represents a new mechanism of accountability that is typical of the Post‐Keynesian welfare state. Because public authorities are no longer able to supervise the growing number of private social care service providers, the responsibility has been partly shifted to service providers themselves as well as to clients. However, it is argued that the idea of self‐monitoring lends itself poorly to ‘delegated’ private social care services, i.e. to services that are outsourced to private service suppliers. Supervision of private social care service providers should not be too eagerly delegated to service providers themselves, or to clients, because we are here dealing with the constitutional right to adequate social care services. Client involvement also involves numerous practical problems, as shown at the end of the article.     

Caregiving in Transition in Southern Europe: Neither Complete Altruists nor Free-riders

In the framework of the SOCCARE Project, focusing on families dealing with a double front of care for children and frail elderly people, similarities can be found in Italy, France and Portugal beyond their different welfare regimes. The comparison of family histories and caregiving strategies, by the methodology of case‐matching, gives an interesting overview of the relationship between the debate on social care and that on the intergenerational contract. The paper aims to understand which are the available combinations of family, informal and institutional resources making a heavy burden of care “acceptable and still normal”: this focuses both typical situations of each country and common features through the countries. The results show how changes in the representations of obligation and duty in the intergenerational pact produce different outcomes and demands in welfare systems. The analysis of shifting boundaries between the public and private spheres in care provides useful policy recommendations, aimed at improving choices and “sustainable” responsibilities of individuals, families and social networks. Sustainable policies seem to be more dependent on family and structural types and resources of networks than on different welfare and services support.     

Supporting familial and community care for children: legislative reform and implementation challenges in South Africa

This article critically evaluates important legislative reforms in South Africa, which, at the height of the AIDS pandemic, are intended to reduce the need for removing children from their families or communities. In a textual analysis of the 2005 Children's Act and the 2006 Children's Act Amendment Bill, the shift in focus from individual interventions to a developmental approach incorporating prevention and early intervention is explained. New family service and alternative care orders such as partial care, shared care, cluster care and support for child-headed households are described. Although these creative solutions have considerable potential, there are gaps in the legislation that require supplementary wording. Drawing on the work of researchers and commentators, it is also shown that an inappropriate approach towards implementation has commenced, which harms rather than assists children. Recommendations are made for improving implementation that may be of relevance to other countries faced with similar challenges.     

Family Support of the Aged: Some Evidence and Interpretation

This paper brings together a range of Australian material concerning family support for the aged. From a review of studies dealing with the family structure of the aged and accounts of inter generational contact and supportive exchanges within families, including migrant families, considerable evidence of family support is found. The implications of the absence of such support are seen from data on the use of services and admissions to institutional care; the preventive effect of marriage and family is apparent, those aged without family being identified as most at risk. Reasons for the commonly held view of family breakdown are then examined and some suggestions for service development outlined.