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Boundaries and Connections Between Formal and Informal Caregivers
Abstract
Although the experiences of formal and informal caregiving have been discussed and debated in the literature, more is assumed than is actually known (McDaniel & Gee, 1993). This qualitative study explored both informal and formal caregivers' perceptions of their own caregiving and the views of each other's caregiving. Information was collected through the use of in-depth interviews with 23 family caregivers and 15 nurses providing home care to older persons. Analysis of interview transcripts and field notes reveals that both informal and formal caregivers engage in all facets of caring work – physical, intellectual and emotional care – but that they carry out this work in varying degrees, and for different reasons. The reasons given for these differences, namely the nurses' professional knowledge and higher status designation, are key elements that define the boundaries between professional and family caregiving. However, it is apparent that, over time, this demarcation diminishes as family caregivers' knowledge and skill match those of health professionals. Study findings point to implications for future theory development and research.
... The challenges of providing home care have been well documented. Lack of support for family caregivers [8][9][10][11], lack of recognition and poor working conditions of home support workers [12,13], early hospital-to-home discharge policy [14], and poor system coordination [15] are examples of the challenges faced by persons living with dementia and their familial and formal caregivers. Furthermore, limited resources to implement and sustain a home care infrastructure [16] and a shift of chronic care to community settings without the corresponding transfer of funds [17] compound the difficulties encountered. ...
... Analysis of focus groups of 46 American home care clinicians revealed five inherent conflicts affecting family caregiver-clinician interactions: unrecognized family involvement; competing priorities and little time; lack of appropriate services to meet family needs; dual obligation of patient advocate and service gatekeeper; the reservation of social work services for difficult cases [9]. While collaboration is typically sought by both formal and familial caregivers, these individuals are situated in an emotionally charged "intermediate" domain, a contested area between the public world of paid care and the private world of family care [10,11]. Thus, alliances between formal and familial care providers in home care are often formed under the guise of partnerships. ...
RÉSUMÉ
D’ici à 2038, le nombre d’heures de soins non rémunérées aux aînés offert par les membres de la famille devraient tripler. Les membres des familles sont souvent suppliés d’aider dans le processus parce que vivre avec la démence peut inhiber la capacité pour prendre une décision. Cette étude ethnographique a soumis les relations au sein de soins de la démence à domicile à un examen critique par le biais des entrevues face-à-face et les observations des participants des clients, des aidants naturels et des prestataires de soins à domicile. Les résultats ont révélé comment les décisions sont imposées dans le contexte du système de soins à domicile formels, et ont mis en évidence trois thèmes: (1) L’accommodation de la compétence/incompétence, comme définie cliniquement ; (2) La prise de décisions inopportunes; et (3) Le renforcement de l’exclusion des déments dans la prise de décision. Ces thèmes illuminent la façon dont les valeurs culturelles (la compétence), les croyances (l’immuabilité du système) et les pratiques (le réglage des décisions) dans le système de soins à domicile sont finalement déterministes dans la prise de décisions pour les déments et leurs aidants. Afin d’optimiser la santé des déments qui se font soignés à domicile, il faut accorder d’attention supplémentaire aux pratiques collaboratives et inclusives des membres des familles.
... The challenges of providing home care have been well documented. Lack of support for family caregivers891011, lack of recognition and poor working conditions of home support workers [12, 13], early hospital-to-home discharge policy [14], and poor system coordination [15] are examples of the challenges faced by persons living with dementia and their familial and formal caregivers. Furthermore, limited resources to implement and sustain a home care in- frastructure [16] and a shift of chronic care to community settings without the corresponding transfer of funds [17] compound the difficulties encountered. ...
... Analysis of focus groups of 46 American home care clinicians revealed five inherent conflicts affecting family caregiver-clinician interactions: unrecognized family involvement; competing priorities and little time; lack of appropriate services to meet family needs; dual obligation of patient advocate and service gatekeeper; the reservation of social work services for difficult cases [9]. While collaboration is typically sought by both formal and familial caregivers, these individuals are situated in an emotionally charged " intermediate " domain, a contested area between the public world of paid care and the private world of family care [10, 11]. Thus, alliances between formal and familial care providers in home care are often formed under the guise of partnerships. ...
With the number of people living with dementia expected to more than double within the next 25 years, the demand for dementia home care services will increase. In this critical ethnographic study, we drew upon interview and participant data with persons with dementia, family caregivers, in-home providers, and case managers in nine dementia care networks to examine the management of dementia home care resources. Three interrelated, dialectical themes were identified: (1) finite formal care-inexhaustible familial care, (2) accessible resources rhetoric-Iinaccessible resources reality, and (3) diminishing care resources-increasing care needs. The development of policies and practices that provide available, accessible, and appropriate resources, ensuring equitable, not necessarily equal, distribution of dementia care resources is required if we are to meet the goal of aging in place now and in the future.
... For example several authors highlight how many nursing tasks (e.g. providing emotional support for clients) are not recognized by colleagues, institutions, or organizations (Glenda Riley & Manias, 2006;Riley & Manias, 2002;Ward-Griffin, 2002). The humanistic and emotional care between patients and nurses is often expected of nurses but not extrinsically rewarded (Bartlett & O'Connor, 2007;Behuniak, 2010;Kouri & White, 2014;Pound et al., 2001). ...
Promoting health equity necessitates the diversification of healthcare workforces. Disability is one aspect of diversity that is increasing in healthcare. While the number of Disabled students in health professions increases, barriers in their work integrated learning (WIL), such as placements in hospitals or clinics, persist. While literature has addressed some of these barriers, there is less known about the social processes that enable access in work integrated learning when it does occur. Therefore, an interdisciplinary team from design, geography, occupational science, nursing, occupational therapy, critical disability studies, and knowledge mobilization explored questions regarding social processes involved in WIL accessibility in clinical settings. The team conducted twenty-five in-depth interviews with 4 placement coordinators, 8 placement supervisors, 6 access professionals, 4 education leaders (e.g. Deans) and 3 healthcare leaders (e.g. site education leaders) from two hospitals and two universities in eastern Canada. The team’s collaborative thematic analysis of participant narratives constructed four themes regarding the invisible work clinical and academic educators engage in to create access: putting in extra time, doing emotional labour, engaging in relational work, and navigating complexities. This labour is unrecognized and optional, and therefore its result—access to education—is inequitably distributed. Educators, policy makers, and institutions need to know how access is created in WIL to promote diversity within health professions and systems.
... As illustrated in Figure 1, for Albert and Amy, friends and family provided support for out-ofhome social events. Similarly, family caregivers may not be equipped to provide supports that are considered specific to formal services expertise or skill set (Ward-Griffin, 2002). Recently, a new singular care program in Saskatoon demonstrated excellent fit between informal and formal services (Compton et al., 2020). ...
Limited research exists on the experiences of older adults participating in community rehabilitation. Our longitudinal, collective case study explored older adults’ experiences while they engaged in community rehabilitation and home care services, as well as family caregivers’ concurrent experiences. Drawing on interpretive description, we inductively analysed interview data gathered at three points over 3–6 months from six family dyads. Questions focused on activities of daily living, instrumental activities of daily living and other meaningful activities affected by changes in the older adult’s health. From our thematic analysis, three themes emerged: (a) Centring community rehabilitation and home care services around the older adult and family; (b) Understanding the intricate interface of formal and informal supports; and (c) Supporting the meaningful aspects of life. Our findings suggest a metaphor of re-braiding, a reconfiguration of activities that requires increased integration of formal and informal supports within home care and community rehabilitation.
... The substitution hypothesis argues that the public sector must provide a formal safety net when families are unavailable, unable, or unwilling to help; when older adults are isolated or abandoned; or when informal caregivers can no longer provide adequate support. In contrast, the complementarity hypothesis argues that a coordinated system of informal support (by the family) and formal support (by government or the private sector) is essential to enhance the quality of life of both older people and their caregivers (Ward-Griffin 2002;Ward-Griffin and Marshall 2003;. Evidence suggests that the most successful formal system is complementary, since it provides a continuum of assistance and care to meet the diverse and ever-changing needs of both the elderly person and his or her caregivers. ...
... While some of the responsibility for care of older adults comes from paid home-care services, individuals and families are the cornerstone of home health-care (Canadian Home Care Association 2008). There is a substantial body of literature that discusses the importance of partnerships between formal (paid) and informal (family) systems of care (Lyons & Zarit 1999, Penning & Keating 2000, Ward-Griffin 2002, Brereton & Nolan 2003, Ward-Griffin & Marshall 2003, Wiles 2003, Guberman et al. 2006, Stone & Dawson 2008. However, the bulk of this research focuses on professional formal care providers such as nurses, physicians, and social workers. ...
Although both family care and home support are considered essential components of home-based health-care, the experiences of family caregivers who have a relative in receipt of home support services are not well understood. Little is known about what aspects of home support services assist family caregivers or hinder them in their caregiving. This study examines family member's experiences of the home support services received by their elderly relatives. Based on a previous Canadian study of contributions in family caregiving, we developed a conceptual model for understanding multiple contributions in caregiving. The present study used this conceptual model to guide the analysis of data from in-depth interviews with family caregivers (N = 52), completed August 2007-April 2008, who have or had an older relative in receipt of home support services in British Columbia, Canada, in the previous 12 months. Verbatim transcripts were read, re-read and independently coded by three members of the research team to identify common themes. Themes relating to direct care (care provided directly to the elderly person) and assistive care (care provided to one caregiver by another) were identified. In discussing the direct care provided by workers, family members emphasised dissatisfaction with instrumental assistance provided by home support workers while also stressing the importance of affective assistance. In commenting about assistive care there were three key themes: caring together, care management, and quality assurance and monitoring. In conclusion, the important role of home support in providing relief for caregivers is highlighted and implications for caregiver policy are discussed.
... This latter sense is demonstrated when workers talk with their clients about what is important to them (the client) or they go beyond the paid requirements of their job and offer to do extra little things like mailing a letter or putting out the garbage. These two components of " emotional caregiving " are separate activities, especially among formal caregivers (Ward-Griffin, 2002). Often, formal caregivers care for (i.e., meet physical, mental, and emotional needs) their clients without feeling affection for them. ...
In this article, the authors explore the home care experience as described by older physically impaired individuals and their caregiving spouses. Separate face-to-face semistructured interviews were carried out with each spouse from nine couples. Analysis of the interview data revealed four themes. For care receivers the themes were Independence and Developing a Trusting Relationship With Home Care Workers. Relief and Continuity were voiced by the caregiving spouses. The authors show how these themes relate to the participants' sense of security, which emerged as a key underlying concept in the home care experience. This study adds to the home care and caregiving literature as it expands our understanding of the relationship between formal and informal caregiving, highlights issues and concerns older couples face as they receive home-based care, and includes both older spouse caregivers and their direct-care recipients.
... Indeed, some authors have suggested that the presence of family and friends may itself be a barrier to accessing services (Armstrong 2001;Aronson and Neysmith 1997;Aronson and Neysmith 2001;Aronson and Sinding 2000;Brotman 2002;Woodward et al. 2004). This contention may be supported by research indicating that those with larger social networks are less likely to utilize formal care services (Aronson and Neysmith 1997;Brotman 2003;Chappell 1993;Crocker Houde 1998;Penning 1995a;Penning 1995b;Penning 2002;Ward-Griffin 2002) despite a research literature indicating that informal care is often not the most preferred care arrangement (Aronson 1990;Aronson 1994;Aronson 2002a;Aronson and Neysmith 1997;Chiu and Yu 2001;McCann and Evans 2002;Newsom and Schulz 1998) as well as concerns surrounding the ability of informal care providers to meet the care needs of older adults living in the community (Aronson 1990;Aronson 1994;Aronson and Neysmith 1997;Barrett and Lynch 1999;Chappell 1993;Fast and Keating 2000;Glazer 1990;McGary and Arthur 2001). ...
Social Development Canada’s mission is “to strengthen Canada’s social foundations by supporting the well-being of individuals, families and communities and their participation through citizen focused policies, programs and services” (Social Development Canada 2005a). Well-being is a concept that goes beyond good health to encompass physical and mental fitness as well as social fitness (being able to perform one’s social roles and the demands of everyday living adequately). As people age, they experience a number of transitions in their lives. They may retire, change residence, loose a spouse, become a caregiver, and/or develop a health problem or disability. These transitions, especially when they occur around the same time, may impact on their well-being and independence and prevent them from being contributing members of society. This paper summarizes the research on what we currently know about the key events and transitions experienced by seniors, their impacts, and the resources seniors have or need to successfully cope with these events throughout the senior years. It will also review what we know about opportunities, gaps or barriers in accessing social support programs and service delivery designed to assist seniors in coping successfully with adverse events and life transitions. Issues to be considered include availability, access and costs of community support and home health care services. Finally, the paper will attempt to provide potential policy research directions to address current knowledge gaps. This is an extensive literature, and we have limited the scope by focusing on the last 10 years of Canadian research published in Journals and by Statistics Canada. We have favored research based on national studies in this review, though there are many excellent case studies and qualitative studies that add texture to our knowledge. Recognizing that the senior population is a very heterogeneous group, this review will examine (where the research
India is ageing rapidly. Being the most populous country in the world, India's ageing scenario is predicted to pose significant challenges, one of which is geriatric caregiving. The present chapter discusses the qualitative aspects of the role of a formal or trained caregivers in the delivery of geriatric palliative care (GPC) who are employed at professional care centres located in urban parts of Pune city, Maharashtra, India. Though palliative care is not a new concept, GPC is an emerging extension of palliative care that aims at maintaining the quality of life (QoL) of ailing older adults. Interestingly, GPC demands extra care and coordinated efforts with the older adults and their family members to reduce the suffering of both of them as GPC also includes end of life care. This is where the role of formal caregiver extends its duty from just being a medium to assist an older adult to also supporting him/her with so much empathy and compassion to understand their needs. The present chapter attempts to portray this extended role of formal caregivers and the contributions of their managers in making GPC a standard practice in geriatric care facilities.
This research examined how moving to a residential care home, a specific form of long-term care facility, influences the quality of the relationship between seniors and their family members and how policies in these homes can facilitate relationships between residents and their family members. In this exploratory study, a total of five non-spousal family members participated in a focus group discussion, and an additional 10 family members participated in face-to-face interviews. The two main themes that emerged identified that admission to a long-term care facility had no influence on family relationships, or it had a positive influence on family relationships. The respondents identified how policies in the home can maintain or enhance family relationships. In particular, they appreciated very flexible policies that included few restrictions on when and where they could interact with their relatives and appreciated facilities providing private spaces to accommodate family interaction. The results of this study, and future research, will aid administrators in long-term care facilities to develop policies that most support and enhance the experience of seniors and their ongoing relationship with their family members.
An emergent grounded theory was used to examine Professionalizing Familial Care, the processes by which registered nurses enact professional care work within the familial care domain. A sample of registered nurses (n = 32) were interviewed by telephone at multiple time points over a 6- to 12-month period. The findings revealed that the professionalization of care work was often reinforced by societal, familial, and self-expectations. Setting Limits and Making Connections were the dialectical overarching processes shaping the professionalizing of care while 6 interdependent substrategies emerged: assessing, advising, advocating, collaborating, coordinating, and consulting. These findings will help inform refinement of policies and practices for nurses who provide care for an older relative.
Focus groups revealed five inherent conflicts that affect home health care clinicians’ interactions with family caregivers: (a) Services often depend on caregivers’ participation, but the home care system does not give them formal status or consideration; (b) clinicians must balance competing priorities within a short time frame; (c) clinicians recognize that families have unmet emotional and training needs, but benefits are not designed to address them; (d) clinicians face conflicting professional roles as patient advocates and service gatekeepers; and (e) agencies reserve social work services, a key to caregiver access to community resources, for their most difficult cases. Building a more rational system will involve raising awareness about the system’s limitation, providing more training and support for caregivers and the professionals who interact with them, and aligning financial incentives with the realities of what it takes to prepare caregivers to care for patients with complex needs when formal services end.
This article presents modes of participation associated with a successful territorial implementation of a palliative care integrated services network as perceived by the diverse groups of stakeholders involved. A qualitative case study was performed in Quebec, Canada, using individual (n = 16) and group (n = 16) interviews, with a total of 106 participants. The analyses were based on the frameworks of Giddens and Patton. From a content analysis, a typology of six interconnected modes of participation at different levels of action emerged: territorial partnership, intraorganizational and interorganizational cooperation, interprofessional collaboration, community contribution, family commitment, and patient involvement. The interplay of the actors involved in different contexts was perceived by the participants as essential to improve accessibility, continuity, and quality of palliative care and the successful implementation of an integrated services network. The role of nonprofessionals is rarely taken into account in the functioning of healthcare systems.
The purpose of this feminist narrative study was to examine the experiences of women in four different health professions (nursing, medicine, physiotherapy, and social work) who provided care to elderly relatives. Although caring is a central and common feature of the personal and professional lives of many women (Baines, Evans, & Neysmith, 1991; Baines, 2004), the separation of professional, paid caregiving from family, unpaid caregiving among health care providers is problematic. Study findings suggest that female health professionals who assume familial responsibilities continually negotiate the boundaries between their professional and personal caring work. Despite the use of a variety of strategies for managing their double-duty caregiving demands, many women experienced a dramatic blurring or erosion of these boundaries, resulting in feelings of isolation, tension, and extreme physical and mental exhaustion. These findings suggest that women who are double-duty caregivers, especially those with limited time, finances, or other tangible supports, may experience poor health, which warrants further study.
This paper reports on the research findings derived from a grounded theory study that examined the processes through which community mental health nurses work with families of older people with depression. Data were collected through semistructured, in-depth interviews with six community mental health nurses and seven family caregivers of older people with depression, and observations of their interactions in natural settings. Data collection and analysis were guided by theoretical sampling and the constant comparative process. The findings indicate that the nurse-family caregiver relationship involves working towards mutuality, which is shaped by both the nurse and family caregiver. It is through the process of "shaping mutuality" that a nurse and family caregiver learn to collaborate, and achieve their individual goals and desired outcomes, both for the patient and for themselves.
The purpose of this qualitative study was to explore styles of engagement used by families with staff in long-term care facilities. Data were gathered through personal interviews with 35 family members. Five styles of engagement were identified: positive, negative, peremptory, cautious, and limited. Factors associated with these different styles were also identified. Implications for practice are discussed.
This paper explores the perspectives which postmodernism and post- structuralism bring to an understanding of care, particularly in the writings of Jacques Derrida, Michel Foucault, Hélène Cixous and Stephen White.
It is suggested that care is paradoxical. On one hand it is a tech nology of surveillance which, as a consequence of the professionalisa tion of caring, constitutes the vigil.
But although this technology is one of control and supplies the authority for profession care, it is also possible to recognise an alternative caring, which is about love, generosity, and a celebration of otherness. This gift of care seeks to enable the cared-for person, and resists the discourses of the vigil.
The paper examines the issues raised for practitioners by this dual character of care.
Access to Skilled Nursing and Home Health Aid services among elderly patients (N = 580) and their family caregivers post hospital discharge was examined using logistic regression. A majority of the sample (65%) were referred for Skilled Nursing services while only 28% were referred for Home Health Aid services. Caregiving situations in which the spouse was the primary caregiver were less than half as likely to be referred for either service when compared to non-spouses. As expected, ADL limitations were a significant predictor of referral for both services. Women patients with the same ADL limitation as men were only about a fourth as likely to be referred for Home Health Aid services as men. Findings are discussed in terms of access to care and the need for policy to consider more than patient limitations in the referral criteria.
Our folk understanding of “work” focuses on those activities you “have to do” to get paid for them. Women's work is correspondingly devalued, for it is either unpaid or limited by the demands of the unpaid work in the home. This understanding also includes a moral force. One should contribute to society by working. This paper shows the restrictiveness of these commonsense understandings and discusses the kinds of work that consequently disappear from view. I focus especially on the work involved in the social construction of daily life and in the maintenance and development of institutions. Finally, I present the rationale for expanding the concept of work to include many activities not previously considered in the folk concept: a keener awareness of the work involved in social constructions serves to dignify the labor and engender respect for the workers who do it.
Over the last decade, a significant body of feminist research has developed which has home-based reproduction as its focus. Strategically placed at the interface of sociology and social policy, this literature has had a significant impact on wider debates about everyday social reproduction. Yet, it has remained largely uncritiqued. Recognising the lack of critical debate, the paper reviews the way in which the concept of caring has been theorised within British feminist research. It suggests that caring has been typically defined by feminist researchers as the unpaid work of kin within the private domain of their family. Gender is seen as the dominant system of social relations which shapes the organisation of such care. Thus, rather than a broad structural analysis of everyday reproduction within families, most feminist research on caring has been restricted to one form of care (unpaid care by relatives) and one structural division (gender). The way in which racial and class divisions are embedded in everyday reproductive work has been largely eclipsed. Drawing on the critiques of Black women writers, the paper highlights forms of, and divisions within, home-based reproduction obscured in past and present feminist research on caring. It takes domestic service as a case-study which highlights how the social divisions of `race' and class, as well as gender, have been constituted through women's experiences of looking after families.
Community care for frail elderly people rests heavily on the work of low-status, paraprofessional home care workers. Home care workers describe their work as highly personalized caring labor that often seeps out of its formal boundaries into informal, unpaid activities. Although these activities are valued by workers, their supervisors, elderly clients, and family members, they represent uncompensated and exploited labor. Cost-cutting trends in home care management that seek to depersonalize home care labor are likely to increase its exploitative potential for paid care workers and, simultaneously, to disadvantage and jeopardize elderly home care clients and their unpaid family caregivers.
Drawing on a qualitative study of women who cared for their elderly mothers, this article explores women's experiences of feeling responsible for elderly relatives. The minimal provision of public services for old people and the relative absence of brothers and husbands from family caregiving emerge as material constraints shaping women's sense of obligation. This is affirmed by ideologies and assumptions about women's association with caring and family ties that permeate subjects' accounts of their situations. Translating their sense of obligation into their lives is a contradictory process characterized by ambivalence and guilt that stifle complaint. Further exploration of the social processes that sustain the inequitable division of caring labor can contribute to interpretations, practices, and policies that benefit rather than constrain women.
Dewaging shifts work from the marketplace to the household. The shift seems a short-term strategy used by capitalists, governmental policy-makers, and managers to reduce the wage bill for service workers in such areas as schooling, retailing, health services, and banking. In health services, the expansion of women's unpaid nursing in the household and a new labor process among paid nursing workers are necessary for new corporate and federal cost-containment strategies. Registered and licensed nurses, nurse's assistants and aides see their jobs eliminated, expanded, or moved from one work site to another. Increased use of outpatient clinics, in-and-out hospital stays of less than one day, and shortened hospital stays mean sick people in their homes, not hospitals. The work of caring for the sick does not disappear, however, though people may go without. Much nursing work is shifted to patients and to their families, and even to friends and neighbors. Within the family, women's unwaged work is central, supporting the new labor process among paid nurses. Wives, mothers, daughters, friends, etc., do the work once done for pay in clinics and hospitals.
Although much of the sociological work on informal or lay care is written in gender neutral language, the empirical reality is that most of the unpaid people who tend to the needs of others, both in sickness and in health, are women. This article uses a socialist-feminist perspective to examine the contributions of women as lay consultants in matters of health and illness and as caregivers to frail elderly people. The socialist feminist perspective is compared to several other approaches to explaining the dominance of women as unpaid providers of health. The ways in which gender, race or ethnicity, and social class structure the economic consequences of providing unpaid health care are discussed. Finally, the policy implications of a socialist-feminist perspective are explored.
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Recent feminist literature on care has suggested that, conceptually, it is better to dissolve the boundaries between ‘formal’ and ‘informal’ care when analysing care. This article suggests that there are policy developments taking place, both in Britain and in some of the countries of Europe, which are dissolving the boundaries between formal and informal care, particularly as far as payment for care is concerned. It is argued that, in this case, far from benefit systems being a form of ‘decommodification’ they are actually a form of ‘commodification’ of the caring relationship. The article then explores these empirical developments, considers their gendered nature and genderedimpact, and their possible consequences for the relationship between care-giver and care-recipient.
This paper describes the first stage of a research project aimed at understanding the needs of clients (and their carers) of district nursing services. The project applies a pluralistic research design, combining qualitative and quantitative methods. Through the use of an ethnographic approach, concepts of needs are generated which are related to how clients and carers perceive themselves and the role of the district nurse. The study attempts to formulate needs within a contextual framework against which an activity analysis of district nurses' work (stage 2) can be evaluated.
An analysis of 60 ethnographic interviews with family caregivers for frail community-based elderly persons has suggested that ethical dilemmas are an important organizing framework for family caregiving. The present paper explores this conjecture as it relates to the practice of occupational therapy with older clients and their families. Major themes of ethical dilemmas in family caregiving, as derived from the ethnographic data, are described. Verbatim interview data are presented to illustrate the close ties between caregiving activity and the caregiver's ethical convictions. Occupational therapists are encouraged to seek understanding of their clients' ethical beliefs in order to maximize the potential for a therapeutic relationship built on mutual understanding and partnership.
This study evaluates role expectancies in essential nursing services of nursing home professionals and relatives of residents.
Whereas previous studies have indicated substantial role ambiguity, the present research indicates significant agreement between
the groups. Even so, areas exist where families deem themselves responsible for a task, but staff expectations are incongruent.
Analysis of this process and steps to ameliorate this problem are discussed.
Sixty ethnographic interviews with 15 family caregivers for frail older people living in the community were analyzed to understand the meaning of activity in caregiving. Schön's (1983) reflection-in-action framework was used to organize the data. Three goals of caregiving activity were derived: (a) getting things done, (b) achieving a sense of health and well-being for the care receiver, and (c) achieving a sense of health and well-being for the caregiver. The family caregiver was conceptualized as a lay practitioner involved in the clinical reasoning and ethical dilemmas integral to the provision of health care for the care receiver. The caregivers' judgments regarding the prioritization and attainment of goals determined the forms of caregiving activities. Implications for occupational therapy practice and the relationship between the caregiver and the professional are discussed.
Little is known about the job-related stress of home-care workers from the point of view of the workers themselves. Thirty-two home-care workers from six community-based, home-care programs sponsored by New York area Catholic Charities agencies were studied. The subjects predominantly were female, white, observant Christians, with a median age of 49 years. Test scores revealed little reported stress; however, interviews revealed significant stress that resulted primarily from interpersonal interactions, affective tasks, and insufficient pay. Coping strategies appeared to include denial, identification with clients, altruism. Low pay was the workers' primary dissatisfaction. The authors suggest ways that social workers, administrators, and supervisors can improve their work with home-care workers and encourage advocacy and social action on behalf of these workers.
This paper is based on an ethnographic study examining how families caring for a chronically ill child in the home construct their experiences of illness. The role of women caretakers is examined, and it is argued that the term family glosses over the work that women do in caretaking. The 'ideology of competence' which determines women's subjective experiences is discussed, and the notion is forwarded that health professionals rely upon this ideology to get the job of caretaking done in the home. Some implications of this discussion for health care delivery are presented.
There is a developing trend to look to families to provide care and support of those in need of rehabilitation. A widespread assumption is that family care is superior care and, with modest degrees of support, families can provide that care. Yet we may question the ethical limits of the obligation of a family or family member to provide care when the demands are severe. Psychologic and moral problems that confront caregivers are examined. In some cases caregivers must sacrifice their present and future welfare. That the moral claim made upon them may seem a justifiable one in many respects does not mean that it will be endurable; that it is endurable does not mean that it is justifiable. The problem is exacerbated by lack of a supportive culture, one that rewards and honors those who take on heroic duties. Caregivers may be socially isolated. If heroic demands are to be made on family members, a richer moral culture is required, not just the provision of improved social services.
Dewaging shifts work from the marketplace to the household. The shift seems a short-term strategy used by capitalists, governmental policy-makers, and managers to reduce the wage bill for service workers in such areas as schooling, retailing, health services, and banking. In health services, the expansion of women's unpaid nursing in the household and a new labor process among paid nursing workers are necessary for new corporate and federal cost-containment strategies. Registered and licensed nurses, nurse's assistants and aides see their jobs eliminated, expanded, or moved from one work site to another. Increased use of outpatient clinics, in-and-out hospital stays of less than one day, and shortened hospital stays mean sick people in their homes, not hospitals. The work of caring for the sick does not disappear, however, though people may go without. Much nursing work is shifted to patients and to their families, and even to friends and neighbors. Within the family, women's unwaged work is central, supporting the new labor process among paid nurses. Wives, mothers, daughters, friends, etc., do the work once done for pay in clinics and hospitals.
Using data from focus groups and individual interviews with family caregivers who had a spouse or a parent with Alzheimer's disease, we examined their reports of interactions with staff in formal care settings. Families most often discussed nurses' aides; they emphasized their desire for an ongoing relationship with staff members; and, they interpreted staff behaviors in terms of high-quality care that was based on the social and emotional care given to their resident as much as on the technical tasks involved in caring for them. These results point to the families' desire for emotionally sensitive care and not just for technically competent performance of tasks.
This paper draws on two recent research studies to consider negotiations and relationships between parents and health staff as regards child health care and child rearing, to which each side contributes. The value of the concept of an intermediate domain, located between the public world of paid work and the private world of the family is explored to throw light on the character of these negotiations and relationships. The implications of gender for relationships between parent and health staff are considered.
Home caregivers play an increasingly important role in providing health services for family members. Although many studies have been done to measure burden and related concepts, few studies have examined holistically the caregiving experiences. A grounded-theory design was used to better understand the caregiving experience from the perspective of caregivers. Seventeen families from a metropolitan intermountain western area comprised the sample. Recipients of care ranged in age from 14 months to 87 years. People with documented mental illness, dementia, or Alzheimer's disease were excluded from the sample. Interviews were conducted in participants' homes. Data were analyzed through constant comparative analysis. The central idea emerging from the data was caregiving as a solitary journey. Burden, responsibility, isolation, and commitment shaped the context of the journey.
Patient satisfaction is an important issue for home health providers. This study tested the influence of organizational factors, particularly human resource management practices, on quality of care, as measured by patient satisfaction. Six hundred ninety-six patients of thirteen home health agencies were surveyed to test the influence of organizational factors on five dimensions of patient satisfaction. Organizational variables included size of the agency, staffing characteristics, educational preparation of RNs, continuing education, and compensation. We found that full-time staffing, the number of BSN-prepared RNs, and percent of budget allocated to benefits all predicted high patient satisfaction scores.
Resource utilization in home health care has become an issue of concern due to rising costs and recent initiatives to develop prospective payment systems for home health care. A number of issues remain unresolved for the development of prospective reimbursement in this sector, including the types of variables to be included as payment variables and appropriate measures of resource use. This study supplements previous work on home health case-mix by analyzing the factors affecting one aspect of resource use for skilled nursing visits--visit length--and explores the usefulness of several specially collected variables which are not routinely available in administrative records. A data collection instrument was developed with a focus group of skilled nurses, identifying a range of variables hypothesized to affect visit length. Five categories of variables were studied using multiple regression analysis: provider-related; patient's socio-economic status; patient's clinical status; patient's support services; and visit-specific. The final regression model identifies 9 variables which significantly affect visit time. Five of the 9 are visit-specific variables, a significant finding since these are not routinely collected. Case-mix systems which include visit time as a measure of resource use will need to investigate visit-specific variables, as this study indicates they could have the largest influence on visit time. Two other types of resources used in home health care, supplies and security drivers, were also investigated in less detail.
Access to Skilled Nursing and Home Health Aid services among elderly patients (N = 580) and their family caregivers post hospital discharge was examined using logistic regression. A majority of the sample (65%) were referred for Skilled Nursing services while only 28% were referred for Home Health Aid services. Caregiving situations in which the spouse was the primary caregiver were less than half as likely to be referred for either service when compared to non-spouses. As expected, ADL limitations were a significant predictor of referral for both services. Women patients with the same ADL limitation as men were only about a fourth as likely to be referred for Home Health Aid services as men. Findings are discussed in terms of access to care and the need for policy to consider more than patient limitations in the referral criteria.
In Canada, disparate social policies--to do with health, family, income security, housing, and so forth--influence caregiving to elders. They are contradictory policies because of their different objectives, histories, and jurisdictions. The wider context of societal and socio-demographic changes highlight additional contradictions in the principles on which social policies regarding caregiving rest. Some of these contradictions are discussed in terms of policies, their consequences, whether intended or not, and what the future might hold for Canadian policies and programs with implications for caregiving to elders.
Increasing reliance on family care of elderly people at home calls for a critical analysis of the relationship between formal and informal caregivers. Although much has been written about how health professionals and family caregivers should relate to one another, we know very little about the relationships that develop between them. Using data from a qualitative study, this article illustrates that relationships between community nurses and family members caring for frail elders are complex, dynamic, and multifaceted. Shifting boundaries in caring work leads to changes in nurse-family caregiver relationships, which can be categorized as four distinct, yet interconnected, types: (1) nurse-helper, (2) worker-worker, (3) manager-worker, and (4) nurse-patient. Each type is described, and implications for nursing practice and research are discussed.
Negotiating boundaries of eldercare: The relationship between nurses and family caregivers
- C Ward-Griffin