Finding dignity in dirty work: the constraints and rewards of low-wage home care labour

The ageing of the population in the US and elsewhere raises important questions about who will provide long-term care for elderly and disabled people. Current projections indicate that home care workers--most of whom are unskilled, untrained and underpaid--will increasingly absorb responsibility for care. While research to date confirms the demanding aspects of the work and the need for improved working conditions, little is known about how home care workers themselves experience and negotiate their labour on a daily basis. This paper attempts to address this gap by examining how home care workers assign meaning to their 'dirty work'. Qualitative interviews suggest that home care workers have a conflicted, often contradictory, relationship to their labour. Workers identify constraints that compromise their ability to do a good job or to experience their work as meaningful, but they also report several rewards that come from caring for dependent adults. I suggest workers draw dignity from these rewards, especially workers who enter home care after fleeing an alienating service job, within or outside the healthcare industry.     

The costs of care: An ethnography of care work in residential homes for older people

The cost of social care, the work conditions experienced by care workers and the quality of care provided by residential homes for older people are all linked, yet we know very little about how this relationship works in practice. Drawing upon an ethnography of two differently priced residential care homes for older people in Southern England, I examine the implications of different financial regimes for care-giving practices. I show how the scheduling and allocation of resources—conveyed, for example, in formal routines and staffing levels—structure the care workers’ time, tasks and activities in each setting. This acts to symbolically demarcate what, or who, is valued. I argue that the availability of resources facilitates and impedes the symbolic culture of care work, shapes care workers’ ability to afford dignity to the individuals in their care and affects how care workers experience, and relate to, their labour. I conclude by discussing how current practices of funding and pricing social care have effects seeping beyond the practical and measurable, and into the realm of the symbolic.     

Ministering to persons who face death. Practical guidance for care givers of persons making end-of-life treatment decisions

It is time care givers learn how to minister effectively and sensitively to those making end-of-life treatment decisions. To do so, care givers need to be aware of the various meanings death and dying hold. Culture, religion, past experiences with death and dying, and current situations can all influence the way persons perceive death and dying. Sensitivity to who the patient and family are, to how they perceive the disease or illness, and to how this perception influences their ability to achieve their life goals is a critical care-giving skill. Sensitivity, however, need not result in value neutrality or tolerance. Care givers should not be mindless executors of patient or family demands. Care givers must learn to talk honestly with patients and families about how a particular disease is most likely to progress and about the types of decisions they are likely to need to make. And then care givers need to present options, remaining sensitive to the patients' beliefs, values, and interests. Persons who care for the dying will face three types of patients, who will require different types of responses. The three types are patients who welcome death, patients who accept death, and patients who fight death. For all types of patients, care givers must keep the care patient centered and responsive to patients' priorities; facilitate informed decision making; promote communication among the patient, family, and healthcare team; support autonomous decision making; mediate conflicts; and offer spiritual counseling.     

Danger signs. Coalition points to causes and consequences of inadequate care of the dying

Dying patients and their families repeatedly express their need for supports based on compassion and caring, yet healthcare efforts focus on often ineffective technological interventions and procedures. Professional healthcare schools provide little or no formal training in pain and palliative symptom management or in the multidimensional approach to care of the dying. And the pace of change in healthcare leaves little time for communication between the patient, family, and caring team. Physician denial of death and dying has a significant impact on clinical decision making and misleads healthcare administrators about priorities. Even when clinicians want to practice holistic supportive care, they are often unable to because of competing productivity demands and lack of reimbursement. Inappropriate therapies may be initiated to justify continued care in acute and skilled nursing environments. Because healthcare professionals may not inform families about what can be done in the way of supportive care, they may choose to ?do everything,? which often means using inappropriate treatments. Supportive Care of the Dying: A Coalition for Compassionate Care is a unique collaborative effort to help change the culture of dying in healthcare and to help Catholic and other organizations offer appropriate care based on respect for the sanctity of life, regard for human dignity, and a commitment to stewardship. The coalition intends to develop a comprehensive supportive care model built on Catholic values and tradition.     

Patient education and emotional support practices in abortion care facilities in the United States

PurposeLittle is known about how patient education and emotional support is provided at abortion facilities. This pilot study documents 27 facilities' practices in this aspect of abortion care.MethodsWe conducted confidential telephone interviews with staff from 27 abortion facilities about their practices.Main FindingsThe majority of facilities reported they rely primarily on trained nonclinician staff to educate patients and provide emotional support. As part of their informed consent and counseling processes, facilities reported that staff always provide patients with information about the procedure (96%), assess the certainty of their abortion decisions (92%), assess their feelings and provide emotional support (74%), and provide contraceptive health education (92%). Time spent providing these components of care varied across facilities and patients. When describing their facility's care philosophy, many respondents expressed support for “patient-centered,” “supportive,” “nonjudgmental” care. Eighty-two percent agreed that it is the facility's role to provide counseling for emotional issues related to abortion.ConclusionsAll facilities valued informed consent, patient education, and emotional support. Although the majority of facilities considered counseling for emotional issues to be a part of their role, some did not. Future research should examine patients' preferences regarding abortion care and counseling and how different approaches to care affect women's emotional well-being after having an abortion.Practice ImplicationsThis information is important in light of current, widespread legislative efforts that aim to regulate abortion counseling, which are being proposed without an understanding of patient needs or facility practices.     

Discursos profesionales sobre la violencia del compañero íntimo: implicación en la atención de las mujeres inmigrantes en España

Objective1) to examine the discourses of professionals involved in the care of female victims of intimate partner violence (IPV), with emphasis on how they describe the immigrant women, the perpetrators and their own responsibility of care; and 2) to compare these discourses with the other professions involved in caring for these women (social services, associations and police and justice).MethodsQualitative study based on semi-structured interviews with 43 professionals from social services, associations and the police and judicial systems. A discourse analysis was carried out to identify interpretive repertoires about IPV, immigrant women and their aggressors, their culture and professional practices.ResultsFour interpretive repertoires emerged from professional discourses: “Cultural prototypes of women affected by IPV”, “Perpetrators are similar regardless of their culture of origin”, “Are victims credible and the perpetrators responsible?” and “Lack of cultural sensitivity of professionals in helping immigrant women in abusive situations”. These repertoires correspond to preconceptions that professionals construct about affected women and their perpetrators, the credibility and responsibility they attribute to them and the interpretation of their professional roles.ConclusionsThe employment of IPV-trained cultural mediators in the services responsible for caring for the female victims, together with cultural training for the professionals, will facilitate the provision of culturally sensitive care to immigrant female victims of intimate partner violence.     

Dying and Death in Some Roma Communities: Ethical Challenges

The Roma people have specific values, therefore their views and beliefs about illness, dying and death are important to be known for health care providers caring for members of this community. The aim of this qualitative study based on 48 semi-structured interviews with Roma patients and caregivers in communities in two regions of Romania was to examine their selfdescribed behaviors and practices, their experiences and perceptions of illness, dying and death. Five more important themes about the Roma people facing dying and death have been identified: (1) The perception of illness in the community as reason for shame and the isolation that results from this, as well as the tendency for Roma people to take this on in their self image; (2) The importance of the family as the major support for the ill/dying individual, including the social requirement that family gather when someone is ill/dying; (3) The belief that the patient should not be told his/her diagnosis for fear it will harm him/her and that the family should be informed of the diagnosis as the main decision maker regarding medical treatment; (4) The reluctance of the Roma to decide on stopping life prolonging treatment; (5) The view of death as ‘impure’. These results can be useful for health care providers working with members of the Roma community. By paying attention to and respecting the Roma patients’ values, spirituality, and relationship dynamics, the medical staff can provide the most suitable healthcare by respecting the patients’ wishes and expectations.     

Constructing the meaning of ultrasound viewing in abortion care

As ultrasound scanning becomes increasingly routine in abortion care, scholars and activists have forwarded claims about how viewing the ultrasound image will affect pregnant women seeking abortion, speculating that it will dissuade them from abortion. These accounts, however, fail to appreciate how viewing is a social process. Little research has investigated how ultrasound workers navigate viewing in abortion care. We draw on interviews with twenty‐six ultrasound workers in abortion care for their impressions and practices around ultrasound viewing. Respondents reported few experiences of viewing dissuading women from abortion, but did report that it had an emotional effect on patients that they believed was associated with gestational age. These impressions informed their practices, leading many to manage patient viewing based on the patient's gestational age. Other aspects of their accounts, however, undercut the assertion that the meaning of ultrasound images is associated with gestation and show the pervasiveness of cultural ideas associating developing foetal personhood with increasing gestational age. Findings demonstrate the social construction of ultrasound viewing, with implications in the ongoing contestation over abortion rights in the US.     

Exploring Occupation Roles of Hospice Family Caregivers from Māori,Chinese and Tongan Ethnic Backgrounds Living in New Zealand

A major challenge to occupational therapists working in palliative care is determining the best ways to help family caregivers who are caring for family members. The purpose of this study was to explore palliative caregiver occupations among Māori, Chinese and Tongan ethnicities. Six informants participated, one woman and one man from each ethnic group. In each of their homes, informants were asked to discuss what it was like caring for their dying family member. The occupational themes resulting from these interviews were food preparation, spirituality and family gathering. Therapists need to be aware of the differences in how people care for family members within their ethnicity. Implications are that occupational therapists can help families identify activities important to them within the main occupational themes: different types of foods and their preparations, various ways to express spirituality and how families gather together members of their extended family. Further, clinicians need to take on the role of a “not‐knowing” but curious health‐care provider in order to meet the needs of caregivers. The limitation was the small number of participants who all lived in one geographic area. Future studies should include a wider group of ethnicities. Copyright © 2014 John Wiley & Sons, Ltd.     

The experiences of pediatric social workers providing end-of-life care

Pediatric social workers working in acute care hospital settings may care for children and their families in end-of-life circumstances. This qualitative study is part of a larger study focusing on the experiences of health care providers working with dying children. This study consisted of 9 semi-structured interviews of acute care pediatric social workers who work with dying children and their families. Themes included the role of social work with dying children, the impact of their work and coping strategies. Authors suggest a hospital-worker partnership in supporting staff and promotion of supportive resources.     

An integrative review on family caregivers’ involvement in care of home‐dwelling elderly

Often family members provide care‐giving, which allows older adults to remain in their homes. With declining health and increasing frailty, care‐giving of elderly people becomes a task of family caregivers (FC) in conjunction with home care nurses. It has been shown in both acute care settings and long‐term care facilities that family members prefer to be involved in decision‐making and care planning for their next of kin. Therefore, an integrative review was conducted to explore the body of knowledge of FCs’ involvement in home‐care settings from the FCs’ perspective. CINAHL, PubMed, and Cochrane databases was searched with the terms family caregiver, involvement, home care, and community dwelling. Studies written in German or English between 1996 and 2017 focusing on FCs’ caring for home‐dwelling older adults together with home care nurses were included and critically appraised. The extracted findings were analysed with concept analysis method. Twenty‐six studies were included and five themes were identified. Four themes formed the basis of assistance towards family caregivers by nurses and included “relationship building with professionals,” “negotiating with professional care,” “being professionally supported,” and “managing role expectations and knowledge sharing”. The fifth theme, “working together” described the mutual care for the care recipient. Although the first four themes were consistent with a pre‐existing conceptual model by Sims‐Gould and Marin‐Matthews (2010), the fifth required an expansion of the model with an additional contribution “collaborative practice”. The findings illustrate that involvement in care is an interactional process, which provides the basis for collaborative practices with the home care nurses for family caregivers. Family members often want to be part of the healthcare team, and nurses need contextual factors that allow providing their full range of skills and knowledge to involve family caregivers accordingly.     

Informal care and terminal illness

This paper is based on a study of the care and services received by people in the year before death in one Yorkshire health authority. In the spring of 1997 in-depth interviews were carried out with bereaved relatives and carers of a weighted sample of 33 people who had died in one Yorkshire health authority in the previous 18 months. Deaths where people were judged to have needed no input from palliative care services were excluded. The sample covers a range of different caring arrangements, experiences of caring for someone who is dying, support from formal services, place and manner of death. All those interviewed were providing some form of informal care or support to those who died, in some cases 24-h care. The interviews provided a valuable insight into ordinary people's experiences of death and of caring for someone who is dying. Most importantly for the purposes of this study, they gave insight into their experiences of services to support both the dying person and themselves in their caring role. The paper discusses the ways in which care of the terminally ill is distinctive. It explores the role of informal care in relation to the wider character and history of the local community, in particular the significance of its declining industrial base, and secondly, the availability of appropriate services to support those caring for the terminally ill. Finally, it makes recommendations about service planning and delivery which challenge the current framework for providing services to the terminally ill.     

The Role of the Social Worker in the Adult Critical Care Unit: A Systematic Review of the Literature

Social workers provide care to patients and families in the adult critical care unit. We conducted a systematic review of the literature to more clearly identify the role of the social worker practicing in the intensive care unit. We conducted a comprehensive search of the literature using the Pubmed, Embase, ISI, Scopus, and Social Work Abstracts databases using the terms “intensive care,” “critical care,” and “social work.” Articles were selected for review if they met the following criteria: formal studies or opinion papers whose primary focus was the role or scope of practice of the social worker in the adult critical care unit. Articles were selected and reviewed independently by two social work investigators. Our search retrieved 550 potentially relevant articles. Twelve full-text articles were deemed eligible for abstracting. Three of the articles were studies that examined different aspects of social work practice including implementation of a family assistance program, social work response to anxiety levels of families in critical care and common activities of critical care social workers. Nine articles were primarily opinion pieces. All of the opinion articles described psychosocial support and counseling as a primary role of critical care social work. Other frequently identified roles were crisis intervention, psychosocial assessment, facilitating communication, end-of-life care, and practical assistance. There is little empiric data describing the role of the critical care social worker. Consistent themes from the articles identified include the role of social workers as counseling professionals, facilitators of communication, and resource agents. Further research to identify formal assessment tools and outcome studies of specific counseling techniques will provide important information for best practice guidelines in this area.     

Living and dying: responsibility for end‐of‐life care in care homes without on‐site nursing provision ‐ a prospective study

The aim of the study was to describe the expectations and experiences of end‐of‐life care of older people resident in care homes, and how care home staff and the healthcare practitioners who visited the care home interpreted their role. A mixed‐method design was used. The everyday experience of 121 residents from six care homes in the East of England were tracked; 63 residents, 30 care home staff with assorted roles and 19 National Health Service staff from different disciplines were interviewed. The review of care home notes demonstrated that residents had a wide range of healthcare problems. Length of time in the care homes, functional ability or episodes of ill‐health were not necessarily meaningful indicators to staff that a resident was about to die. General Practitioner and district nursing services provided a frequent but episodic service to individual residents. There were two recurring themes that affected how staff engaged with the process of advance care planning with residents; ‘talking about dying’ and ‘integrating living and dying’. All participants stated that they were committed to providing end‐of‐life care and supporting residents to die in the care home, if wanted. However, the process was complicated by an ongoing lack of clarity about roles and responsibilities in providing end‐of‐life care, doubts from care home and primary healthcare staff about their capacity to work together when residents’ trajectories to death were unclear. The findings suggest that to support this population, there is a need for a pattern of working between health and care staff that can encourage review and discussion between multiple participants over sustained periods of time.     

Reconciling conceptualisations of the body and person‐centred care of the older person with cognitive impairment in the acute care setting

In this article, we sought reconciliation between the “body‐as‐representation” and the “body‐as‐experience,” that is, how the body is represented in discourse and how the body of older people with cognitive impairment is experienced. We identified four contemporary “technologies” and gave examples of these to show how they influence how older people with cognitive impairment are often represented in acute care settings. We argued that these technologies may be mediated further by discourses of ageism and ableism which can potentiate either the repressive or productive tendencies of these technologies resulting in either positive or negative care experiences for the older person and/or their carer, including nurses. We then provided examples from research of embodied experiences of older people with dementia and of how nurses and other professionals utilized their inter‐bodily experiences to inform acts of caring. The specificity and individuality of these experiences were more conducive to positive care experiences. We conclude the article by proposing that the act of caring is one way nurses seek to reconcile the “body‐as‐representation” with the “body‐as‐experience” to mitigate the repressive effects of negative ageism and ableism. The act of caring, we argue, is the essence of caring enacted through the provision of person‐centred care which evokes nurses to respond appropriately to the older person's “otherness,” their “variation of being” while enabling them to enact a continuation of themselves and their own version of normality.     

Making death ‘good’: instructional tales for dying in newspaper accounts of Jade Goody’s death

Facilitating a ‘good’ death is a central goal for hospices and palliative care organisations. The key features of such a death include an acceptance of death, an open awareness of and communication about death, the settling of practical and interpersonal business, the reduction of suffering and pain, and the enhancement of autonomy, choice and control. Yet deaths are inherently neither good nor bad; they require cultural labour to be ‘made over’ as good. Drawing on media accounts of the controversial death of UK reality television star Jade Goody, and building on existing analyses of her death, we examine how cultural discourses actively work to construct deaths as good or bad and to position the dying and those witnessing their death as morally accountable. By constructing Goody as bravely breaking social taboos by openly acknowledging death, by contextualising her dying as occurring at the end of a life well lived and by emphasising biographical continuity and agency, newspaper accounts serve to position themselves as educative rather than exploitative, and readers as information‐seekers rather than ghoulishly voyeuristic. We argue that popular culture offers moral instruction in dying well which resonates with the messages from palliative care.     

Acceptance of dying: a discourse analysis of palliative care literature

The subject of death denial in the West has been examined extensively in the sociological literature. However, there has not been a similar examination of its "opposite", the acceptance of death. In this study, I use the qualitative method of discourse analysis to examine the use of the term "acceptance" of dying in the palliative care literature from 1970 to 2001. A Medline search was performed by combining the text words "accept or acceptance" with the subject headings "terminal care or palliative care or hospice care", and restricting the search to English language articles in clinical journals discussing acceptance of death in adults. The 40 articles were coded and analysed using a critical discourse analysis method. This paper focuses on the theme of acceptance as integral to palliative care, which had subthemes of acceptance as a goal of care, personal acceptance of healthcare workers, and acceptance as a facilitator of care. For patients and families, death acceptance is a goal that they can be helped to attain; for palliative care staff, acceptance of dying is a personal quality that is a precondition for effective practice. Acceptance not only facilitates the dying process for the patient and family, but also renders care easier. The analysis investigates the intertextuality of these themes with each other and with previous texts. From a Foucauldian perspective, I suggest that the discourse on acceptance of dying represents a productive power, which disciplines patients through apparent psychological and spiritual gratification, and encourages participation in a certain way to die.     

Job Stress and Job Satisfaction: Home Care Workers in a Consumer-Directed Model of Care

Objective. To investigate determinants of job satisfaction among home care workers in a consumer‐directed model. Data Sources/Setting. Analysis of data collected from telephone interviews with 1,614 Los Angeles home care workers on the state payroll in 2003. Data Collection and Analysis. Multivariate logistic regression analysis was used to determine the odds of job satisfaction using job stress model domains of demands, control, and support. Principal Findings. Abuse from consumers, unpaid overtime hours, and caring for more than one consumer as well as work‐health demands predict less satisfaction. Some physical and emotional demands of the dyadic care relationship are unexpectedly associated with greater job satisfaction. Social support and control, indicated by job security and union involvement, have a direct positive effect on job satisfaction. Conclusions. Policies that enhance the relational component of care may improve workers' ability to transform the demands of their job into dignified and satisfying labor. Adequate benefits and sufficient authorized hours of care can minimize the stress of unpaid overtime work, caring for multiple consumers, job insecurity, and the financial constraints to seeking health care. Results have implications for the structure of consumer‐directed models of care and efforts to retain long‐term care workers.