Hospice and Self-Assessed Quality of Life in the Dying: A Review

This review summarizes the impact of hospice and palliative end-of-life care on the self-assessed quality of life (QoL) in terminally ill persons. Articles were included if researchers utilized at least two observations post–hospice admission and were published in English between January of 2000 and December 2012. Findings from included studies synthesize results of a variety of terminal patients (n = 1,017) across settings. Only one study utilized a non-treatment control group. The remaining studies compared variations of program inclusions, settings, or QoL scores across carcinoma site. The studies included indicated mixed outcomes related to the effect of hospice on QoL in the dying.     

Relationships with death: the terminally ill talk about dying

This article describes a qualitative study exploring the experiences of terminally ill patients and their families as they lived with the inevitability of death. Frustrated by the dominant discourse surrounding the culture of dying--namely that of Elisabeth Kübler-Ross's stage theory--I sought to revisit the experiences of the terminally ill by talking directly with them. Instead of focusing on how people reacted to the introduction of death into their lives, this research attended to how the dying began relating to life and death differently as a result of death's presence. Through an analysis of ethnographically collected data, the meanings participants constructed around their experiences were explored--culminating in the creation of seven "relationships" that participants shared with death.     

Hospice Eligibility and Election: Does Policy Prepare Us to Meet the Need?

A 7-point policy model is used to examine policy on hospice eligibility and election in the United States. Despite the growth of hospice, many eligible patients continue to lack access due to difficulties experienced by providers in discerning 6-month prognoses among chronically ill patients, the inability of patients to elect hospice alongside curative care, and limited reimbursement for hospice providers. Though the landscape of dying has evolved, with more deaths occurring later in life from chronic illness, Medicare hospice eligibility requirements have historically remained the same. Utilization would increase if hospice agencies were able to provide fewer restrictions by including ongoing treatments such as transfusions, intravenous nutrition, or palliative radiation. Hospices would be more likely to enroll critically ill patients who require some ongoing curative measures if Medicare reimbursement rates were higher, and patients would be more likely to seek hospice earlier if Medicare election policies were altered to allow concurrent care. Participation would also be increased by extending hospice eligibility past the traditional prognosis of 6 months. Though expansion in public spending of hospice care has been met with some opposition, current research suggests that potential savings due to decreased costs in acute care is promising.     

Supervision of students in social care education: practice teachers’ views of their role

This paper presents findings from research about how practice teachers in social care education in Ireland view their role, in particular what elements they prioritise and what they see as relatively unimportant. The aim of the research was exploratory, seeking to discover commonalities and differences in how practice teachers saw their role in the supervision of social care students. Q methodology was used to compare the participants’ viewpoints. Twenty practice teachers, from varying practice backgrounds and levels of experience, sorted statements outlining aspects of the practice teacher’s role, during individual interviews. Analysis indicates participants had two ways of conceptualising the role. One focuses within the agency, prioritising students’ awareness of the clients using the social care service and policies as guiding practice. The second encapsulates a broader view of learning beyond the agency, focusing on the practice teacher assisting the student to integrate theory with practice and using reflection as a learning tool. Conclusions are drawn in relation to social care education.     

Positive dying and resiliency in later life: A qualitative study

This article examines resiliency factors and processes of older adults who experienced positive dying from their perspectives. A qualitative study was conducted based on interviews with 16 hospice patients and their primary caregivers. Core resiliency factors identified included empowering relationships with significant others, spiritual beliefs and practices, ability to skillfully confront mortality, and a stable caregiving environment. These older adults' psychological processes were characterized by a dialectical tension of surrender and resistance, and a creation of life-affirming narratives through which they derived meaning of death and dying. Aspects of personal growth and psychosocial and spiritual well-being were interrelated in these dying older adults' experience of life fulfillment. The examples of resilient older adults suggest that greater attention should be devoted to the interrelatedness of spiritual and psychosocial well-being and human development. Developing an understanding of the positive potential at the end of life is essential to form new ideas in end-of-life care.     

Socialization to dying: social determinants of death acknowledgement and treatment among terminally ill geriatric patients.

Although the vast majority of deaths occur among terminally ill geriatric patients, little is known about the etiology of these patients' death acknowledgement and ultimate type of treatment. Based on interviews with 76 triads composed of physicians, terminally ill patients, and primary caregivers, this study uses the socialization perspective to identify the actors and actions that most strongly affect the patient's death acknowledgment and receipt of exclusively palliative care (i.e., socialization to the dying role). Whereas patient preferences and sociodemographic characteristics do not influence significantly the patient's odds of death acknowledgment, these odds are increased if their primary caregivers accept death, their physicians are not affiliated with a teaching hospital, and the terminal prognosis is disclosed to them and disclosed "matter-of-factly." Patients who acknowledge death, whose agents value pain alleviation over life-prolongation, and whose physicians are not affiliated with a teaching hospital, are substantially more likely to receive exclusively palliative rather than curative terminal treatment.     

An Ethnography of an AIDS Hospice: Toward a Theory of Organizational Pastiche

This article describes everyday life at a hospice that provides terminal, residential care to persons with AIDS. Data were gathered over 12 months of participant observation and a series of formal interviews. The hospice is a nonprofit organization that receives most of its financial support from local community churches and agencies. The philosophy of the hospice is common to its genre—that is, care for dying patients should be holistic, personal, and palliative. The hospice staff largely adheres to this philosophy yet also organizes its everyday activities to meet the practical needs of everyone involved. Some of the more interesting staff practices include the use of touch for healing and communicating, and stress management techniques. The essence of everyday life in the hospice, though, is the relationship between the staff member and the resident. The study identifies three types of relationships—caring, pastoral, and intimate. The conclusion focuses on the value of integrating traditional interactionist ethnography and postmodernist social theory for conducting qualitative research on emerging health care phenomena like the AIDS hospice. The concept of organizational pastiche is offered to interpret the distinctive ways health care organizations specializing in HIV/AIDS care must adapt to the unprecedented cultural and biological features of the epidemic.     

Increasing Opportunities for Co-production and Personalisation Through Social Work Student Placements in Disabled People's Organisations

Social work student practice placements in disabled people's organisations offer several advantages for individual students, their peers and tutors, and DPOs themselves, who can offer placements for students in supporting service users to give their views as well as delivering social care services. In this context professional skills and anti-discriminatory practice are fostered through learning directly from disabled people as experts without the constraints of local authority policies.

This paper draws on my experiences of such student placements at Wiltshire and Swindon Users' Network over a 15-year period, 1993–2008, in collaboration with different universities. The social work student on placement here experiences an alternative organisational culture which recognises service users' expertise over professionals. The student learns to value collective peer support and working with activists who view their experience through the framework of the social model of disability. This facilitates a two-way exchange as the student learns about user-led practice and the disabled activists appreciate the skills the student brings.

The advent of policies of personalisation, the Big Society and the decreased role of local authorities is challenging the traditional model of adult care social work within local authorities. The placement of social workers in local centres for independent living, in order to provide intensive one-to-one support in support planning for those in complex situations, is only likely to increase in future. This can be seen as a positive alternative which enables professionals to rediscover their professional values and practice and extends the opportunity for placements beyond DPOs concerned with user involvement only.     

A big hole with the wind blowing through it: Aboriginal women's experiences of trauma and problem gambling

Although studies have shown a link between social trauma and problem gambling (PG), there is little research involving Aboriginal women in this area, despite Aboriginal women being potentially at higher risk for both social trauma and problem gambling. This article describes the results of a qualitative phenomenology study asking seven Aboriginal women living in Western Canada to describe their experiences of social trauma and gambling problems. Results suggest four main themes, describing: (1) the Aboriginal women's experiences of social trauma (‘the three tigers’); (2) their use of gambling to cope with these experiences (‘a big hole with the wind blowing through it’); (3) their experience of problem gambling (‘I'm somebody today’); and (4) their process of healing from social trauma and gambling problems (‘a letter to John’). Participants described what they felt was a clear link between social trauma and problems with gambling, and how gambling helped to change their mood and block out the past. The results raise the possibility that Aboriginal women with gambling problems may need support to heal from social trauma – including racism and colonization – and that upstream initiatives to reduce the incidence of social traumas may be an important response to problem gambling among Aboriginal women.     

THE EMERGING ROLE OF THE MEDICAL SOCIOLOGIST IN PALLIATIVE CARE SETTINGS

The demographics of a rapidly aging society and the chronic nature of contemporary illness intersect in the twenty-first century to confront medicine with the challenge of reenvisioning health care at life's end. Using analytic, interpretive, and reflexive tools, the medical sociologist can assist health care teams in improving quality of life terminally ill patients and their caregivers. In this article, we explore the role of the medical sociologist in palliative care settings, discuss ways to integrate that role into the day-to-day processes of palliative medicine, and identify three areas of intervention where medical sociologists can bring a unique perspective to end-of-life settings. We conclude by examining impediments to the inclusion of the medical sociologist on the clinical team and discussing how these barriers can be addressed.     

Children in Kinship Foster Care Speak Out: “We Think We're Doing Fine”

This article describes the findings from interviews with six African American children currently living in kinship foster care. The general purpose of the interviews was to explore successful aspects of the kinship foster care experience from the children's perspective. Hermeneutic phenomenology guided the interpretation of the texts. Implications for casework practice are discussed.     

Social work field education: believing in supervisors who are living with disabilities

Much of what is written by non-disabled authors about living with disabilities does not mirror people’s experiences or opportunities. Literature is often written about people’s abilities (or disabilities) rather than by or with people. Discourse about supervision of social work students can risk assuming that supervisors are people who do not identify as living with disabilities. This research is a co-operative inquiry into the experience of being an Australian social work student supervisor who is living with disabilities. The article extends the literature about being a social work field educator to include ability, and values the practice wisdom of experienced social workers including a current student supervisor who is living with a disability.     

Fair play: creating a better learning climate for social work students in social care settings

This paper describes a pilot study and subsequent evaluation undertaken by the author which arose from his experiences as a practice teacher working with a student in a day care facility. The catalyst for the study arose from one student's comments about the confusion he and others on the placement site experienced regarding his role as a social work student in a setting where there was no defined social work role.

It led to a study of students' views in a range of settings across South & East Belfast Trust, some of which may be deemed to be ‘social work settings’, i.e. with a defined social work role, while others may be considered ‘social care settings’, i.e. with no defined social work role. The aim of the study and subsequent evaluation was to consider problematic issues which arose for students in social care settings and how the quality of learning opportunities for them could be improved.     

HIV/AIDS and Home Based Care in Botswana

SUMMARY

The extent of the AIDS pandemic in Africa (and specifically in Botswana), and the lack of institutional frameworks to address concomitant issues, have necessitated the adoption of home based care for sufferers as national policy. The practice is beset by problems, given the severe symptomatic nature of the disease and the general lack of human and material resources to address the needs of patients and care-givers.

A study of one such programme in the Kweneng District of Botswana highlighted gender imbalances, poverty, lack of appropriate skills, over-involvement of the elderly, deficient specialised facilities, need for volunteer capacity building, inadequate income generating activities, insufficient counseling services, and culturally determined cognitive processes as areas requiring urgent attention. It is apparent that the programme needs strengthening through appropriate support mechanisms and that alternative strategies should be devised for those whose circumstances demand them.

The international hospice movement, represented in Botswana, exemplifies a philosophical and service model for multisectoral consideration and implementation on a nationwide scale. The article discusses, inter alia, day care centres and residential units for the terminally ill; a system of highly trained volunteers to work with patients and their families; consistent, skilled nursing services in home based care situations; and halfway houses for training of care-givers as possible solutions to the problem.

The contextualization of such measures will undoubtedly assist in bolstering Botswana's unchallenged record of high standards in governance and social development.     

Family and nation: Brazilian national ideology as contested transnational practice in Japan

Studies of Brazilian Nikkeis (Japanese emigrants and their descendants) living in Japan tend to conceptualize ‘family’ and ‘nation’ as two distinct entities. Such distinctions are filtered through mutually exclusive discourses and understandings of national and ethnic identity. In this article, however, I view national attachments and migrant experiences in Japan through the lens of ideology, embodied experience and kinship relations. Treating national ideology as lived process sheds fresh light on the dynamics of state—society relations in transnational social spaces. I suggest that the ability of Brazilian state actors to impose social, moral and economic regulation on its citizens in Japan is compromised by the extent to which such discourses are ontologically grounded in the social relations of migrant family life. It is through these kin ties, I argue, that people set the tone and rules of play for state interests to encroach or otherwise on their everyday lives in these transnational social spaces.     

The Experiences of Care Leavers (Post-care Adults) in Social Work Education

This paper explores the experiences of social work students on qualifying degree programmes in the UK who have previously been in care or ‘looked after’. Using a sample drawn from three social work programmes in the North West of England, a semi-structured interview schedule was constructed, with the support of social workers who had been in the care system, to examine the individual journeys of 11 students. This paper aims to explore, with this group of students, how their experiences relate to their decision to apply for a place on a social work course, their experience of admission and the duration of the programme. The paper is of particular relevance to social work educators and makes specific suggestions regarding how current practice in social work education might improve.     

Brief admission program. An alliance of inpatient care and outpatient case management

1. Brief planned and crisis admissions to an inpatient psychiatric unit are presented as a component supportive of outpatient care and case management for chronically mentally ill patients. 2. Typical patients admitted to this inpatient short-term program are those experiencing a life stress or temporary crisis; chronically mentally ill patients who cycle and experience exacerbations of their illness; and those who need to make the transition from an acute inpatient unit to community living. 3. The Brief Admission Program treats the individual's response to and the consequences of a lifelong illness and enables the patient to return to his previous level of functioning and continue necessary outpatient treatment.     

Belonging to the library: humanising the space for social work education

Abstract

This article describes the running of four Living Libraries on a UK postgraduate social work course. A Living Library is a metaphoric remodelling of a conventional library where people, as authors of their experiences, provide specialist knowledge based on authorial areas of expertise. In the Living Libraries discussed here, ‘Living Books’ carried stories of social work—their narratives were of lived experiences as people using social care services; as carers in personal relationships with others who use social care services; or, as social work practitioners. The focus of this article is on those Living Libraries involving the participation of the first two of these groups. Drawing on social psychology, phenomenology and human geography, we propose that a Living Library can act as a connective space within social work education by engendering a discursive forum where all participants—people with experiences of services, students, practitioners and social work educators—are given both the freedom and obligation to talk openly about their differential experiences, fears and hopes for social work. Through this process, opportunities are created to consider how improvements that meet all stakeholders’ interests may be achieved.