Implications of the Schiavo case for understanding family caregiving issues at the end of life

The case of Mrs. Terri Schiavo illustrates common themes in family caregiving at the end of life but is distinctive from most family caregiving situations in other ways. As occurred in Mrs. Schiavo's case, family members do act as both caregivers and decisionmakers for their loved ones at the end of life, often without the benefit of written advance directives. Family stress and conflict may result, yet seldom lead to court proceedings, legislative intervention, and media coverage as occurred in the Schiavo case. The importance of informal conflict resolution and the limitations of adversarial legal approaches are discussed.     

Alzheimer's disease caregiving information and skills. Part II: family caregiver issues and concerns

In recent years researchers have carried out an increasing number of clinical trials with family caregivers of the elderly. The results of these interventions have suggested that caregiver skill-building interventions may be more effective than information/support interventions. Although researchers have given considerable attention to the information and support needed by family caregivers, less is known about how this information and support translates into caregiver skills or into changes in behavior. This is the second in a series of three articles on a study in which researchers used qualitative methods to analyze summaries from the group component of a larger caregiver clinical trial. In this article we describe caregiver issues and concerns in five major areas: (a). dealing with change, (b). managing competing responsibilities and stressors, (c). providing a broad spectrum of care, (d). finding and using resources, and (e). experiencing emotional and physical responses to care. We identify specific skills needed by caregivers in addressing these caregiving issues and concerns, and we compare and contrast skilled with less skilled caregivers. Further work is needed concerning the focus and methods of future caregiver skill-based interventions.     

Complexity of family caregiving and discharge planning

Older adults and their family caregivers face numerous decisions about hospital discharge, including where they will go and how they will receive care. Older adults who account for nearly 37% of all hospital discharges often need care and support of family members at the time of hospital discharge. This study examines decisions made by hospitalized older adults, families, and health care team members (HCTMs) about hospital discharge. The sample included older adults (n = 13, average age 84), family members (n = 12, average age 71), and HCTMs (n = 7, average age 47). Findings revealed the complexity of hospital discharge planning for older adults through five themes as follows: (a) home, (b) staying independent, (c) "advocating for them," (d) deciding what to tell, and (e) changing the plan.     

AIDS family caregiving: transitions through uncertainty

The purpose of this study was to describe the experience of AIDS family caregiving. Grounded theory provided the methodological basis for qualitative data generation and analysis. Extensive interviews were conducted with 53 individuals (lovers, spouses, parents of either adults or children with AIDS, siblings, and friends) who were taking care of a person with AIDS at home. Relevant features of the social context of AIDS family caregiving were explored. Findings revealed the basic social psychological problem of Uncertainty, a core category of Transitions Through Uncertainty, and five subcategories: Managing and Being Managed by the Illness; Living With Loss and Dying; Renegotiating the Relationship; Going Public; and Containing the Spread of HIV. Stages and strategies of each subcategory detailed individuals' responses to the challenges of AIDS family caregiving and elaborated the day-to-day experiences. Uncertainty as a critical challenge for individuals and families facing life-threatening illness is discussed in light of recent research.     

A transactional model of cancer family caregiving skill

Family caregivers of persons receiving treatment of cancer must acquire illness-related skills not usually found among nonprofessional caregivers. Although research is needed to understand the skill acquisition process, no models of family caregiving skill exist to guide such research. The purpose of this study was to develop a model of caregiving skill through qualitative research. Participants were 44 caregiver/patient dyads and 63 individual caregivers. Data were collected using a semi-structured interview. A transactional model of family caregiving skill was developed that includes the concepts of demands of the illness situation, patterns of care, caregiver responses, and patient responses.     

Newman's theory of health applied in family caregiving in Canada

This study was conducted using an innovative mode of heuristic inquiry within the context of Newman's theory of health as expanding consciousness. Twelve caregiving families of persons who were diagnosed with schizophrenia participated in the study. In accordance with Newman's theory of health as praxis, the majority of the participants in the study recognized their patterns of the whole. As a result, they reported understanding and acceptance of their relative's mental illness.     

Narratives of family caregiving: four story types

Researchers across disciplines have recognized considerable individual variation among caregivers in their response to the experiences of caregiving. One explanation for individual variation is that caregivers make different meanings from caregiving even under externally similar circumstances. This paper describes findings from a study that combined two qualitative strategies, across-case, thematic analysis and within-case, narrative analysis, to investigate meaning in accounts of family caregiving. Themes identified in the across-case analysis were interpreted in the context of patterns identified in the narrative analysis, as well as in the overall framework of caregivers' process of making meaning. Caregivers in this study told four types of stories: stories of ideal lives, stories of ordinary lives, stories of compromised lives, and ambiguous stories. Characteristics of each story type are described, and an example of an ambiguous story is also included as an illustration of the method. Findings suggest a new approach to understanding family caregiving that incorporates the diverse meanings caregivers make of their often similar experiences.     

Seizing possibilities for positive family caregiving in nursing homes

Aims. This paper explores the ways family members reconstruct meaning through seizing possibilities for positive caregiving in nursing homes. Background. The importance of the ability of family caregivers to adapt and accommodate has been well documented in international family caregiving research. Through engagement in caregiving activities, families learn to modify, adapt and accommodate to changes in their situation and relationships. The support family caregivers experience in learning to accommodate change is crucial in enabling them to reconstruct positive aspects of caregiving in a long‐term aged care context. Method. In this study, a hermeneutic phenomenological approach was adopted informed by the philosophical world views of Heidegger and Gadamer. Data collected by in‐depth interviews and participant observations, from a purposeful sample of 14 family caregivers, underwent hermeneutic analysis. Results. Five shared meanings associated with seizing possibilities for positive caregiving were revealed: accommodating new and different ways of caring; feeling a part of the nursing home community; seeing the whole picture; learning to care in stress‐reducing ways and learning to seize possibilities for self. Conclusion. This paper illustrates how families, through caregiving experience in nursing homes, learn to become active managers, negotiating, accommodating and redeveloping a sense of future viewed with hope, strength and positive anticipation. Relevance to clinical practice. By highlighting what is attributed significance by families, a critical examination of the difficult issues which obstruct the development of meaningful partnerships among nurses, family and their relatives is facilitated. In particular, an examination of tensions at an ideological level supports the need for future research to focus its efforts on examining the ways of implementing nursing care that facilitates partnerships that incorporate and build upon positive and equal relations among staff, families and residents in the context of the nursing home setting.     

Interactive use of genograms and ecomaps in family caregiving research

This article argues for the concurrent and comparative use of genograms and ecomaps in family caregiving research. A genogram is a graphic portrayal of the composition and structure of one's family and an ecomap is a graphic portrayal of personal and family social relationships. Although development and utilization of genograms and ecomaps is rooted in clinical practice with families, as research tools they provide data that can enhance the researcher's understanding of family member experiences. In qualitative research of the supportive and nonsupportive interactions experienced by male family caregivers, the interactive use of genograms and ecomaps (a) facilitated increased understanding of social networks as a context for caregiving, (b) promoted a relational process between researcher and participant, and (c) uncovered findings such as unrealized potential in the participant's social network that may not be revealed with the use of the genogram or ecomap alone, or the noncomparative use of both.     

A family caregiving model for public health nursing

The absence of clear definitions of public health nursing competency have plagued efforts to demonstrate the need for public health nursing programs. This article describes a model that can be used to explain why public health nursing services should be integral to the public agenda.     

The meaning of daily activity in family caregiving for the elderly

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. Sch?n'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.     

Stress of AIDS caregiving: A preliminary overview of the issues

Abstract

This paper describes the stressors experienced by lovers and friends who were caregivers to AIDS patients and the social supports and coping strategies they drew on in efforts to mediate stress. From exploratory, intensive interviews with San Francisco men who provided care in their homes or those of the patients, three types of stressor were identified. One involves exigencies within the caregiver role itself, such as the demands and burdens encountered in housekeeping and nursing activities and in the management of financial and legal affairs. A second type of stressor involves the uncertainties caregivers experience concerning their own future, uncertainties that arise from the fact that homosexual caregivers are often exposed to the same set of health risk factors as the patients. Third, being a caregiver can create stressful problems in other roles. Thus, the demands of caregivmg can disrupt multiple areas of life-occupational, economic, and social. Once disrupted, these become independent sources of stress.

Formal and informal support systems appear to be important resources in sustaining caregivers and allowing them to continue in this role. In addition to support systems, a variety of coping strategies that may also help caregivers to sustain themselves have been identified. These strategies fall into three classes: those that function to minimize the physical and management demands of caregiving; cognitive and perceptual devices that reduce the level of threat the situation holds for the caregiver; and behaviors and practices that keep tensions and anxieties within manageable bounds.     

The relationship between family obligation and religiosity on caregiving

The purpose of this study was to examine the relationship between family obligation and religiosity on the positive appraisal of caregiving among African-American, Hispanic and non-Hispanic Caucasian family caregivers of older adults. Roy's adaptation model guided formulation of the aims and study design. A cross-sectional, correlational study design was employed to examine the relationship amongst variables for the family caregiver participants. Study participants (N = 69) completed a demographic tool and four instruments the: (1) Katz index, (2) obligation scale, (3) Duke University religion index, and (4) positive appraisal of care scale. There was a significant correlation between family obligation and positive appraisal of caregiving. However, there was no relationship between the family caregiver's religiosity and positive appraisal of caregiving overall. Demographic variables were also examined to show a higher marginal mean for Hispanic primary caregivers in relation to the positive appraisal of caregiving. Future studies should consider replicating these findings in a larger sample to provide health care professionals with substantial evidence to incorporate culturally sensitive interventions aimed at promoting positive outcomes and healthy family behaviors.     

Helping a family primary caregiver adjust to caregiving stress

The authors present a case study of a nursing experience with a primary caregiver who cared for his wife for more than 10 years (1/18/92 to 1/29/02). Data were collected by observation, interviews, physical examination, and an assessment instrument consisting of the Barthrel Index, Karnofsky Scale, Caregiver Burden, Risk of Impaired Nutritional Status, Quality of Caregiving Index, Norton Skin Index, and Major nursing problems for both the care receiver and caregiver were: a) everyday quality of life was severely impacted by an overload of caregiving stress, b) insufficient social support, and c) deficiencies in family functioning. The authors describe the details of the primary intervention effort, primarily helping the patient and caregiver locate and contact formal and informal social support resources.     

Narratives of family caregiving: the process of making meaning

Researchers across disciplines have identified meaning as an important influence on family caregivers' responses to caregiving. This Paper describes a qualitative inquiry into the process of making meaning used by caregivers. This process includes three interrelated components: expectations, explanations, and strategies. Caregivers used this process to make sense of caregiving in the larger context of their lives, interpreting both the experience of caregiving and their own affective responses. Expectations included predictions for events or behaviors. Explanations incorporated both moral and practical reasoning to account for discrepancies between predicted and actual outcomes. Strategies, actions taken to actualize expectations, were influenced both by desired outcomes and by the presence of an underlying explanation for a given course of action. This paper provides some narrative examples of the process of making meaning to illustrate the components of making meaning and the interrelationships among them.