Families' awareness of and response to dying.

PURPOSE/OBJECTIVES: To explore how family care-givers develop and respond to an awareness that their relative is dying. DESIGN: Qualitative, interpretive. SETTINGS: Four major providers of cancer services in Brisbane, Australia, including a hospital, hospice, homecare nursing service, and oncologist's office. SAMPLE: 20 recently bereaved adult family caregivers (mean age = 48.5): 11 females, 9 males--16 spouses, 2 daughters, and 2 mothers of adults. METHODS: Semistructured interviews transcribed verbatim and content analyzed. MAIN RESEARCH VARIABLE: Developing and responding to an awareness of dying. FINDINGS: Five major themes emerged from the analysis. Two core categories, Being Uncertain and Agonizing, depict the emotional struggles that characterize the process of developing an awareness of dying. Three additional categories-Hoping, Pretending, and Preparing-represent strategies used by family caregivers to manage these emotional struggles. CONCLUSIONS: Developing an awareness of dying is a gradual process for family caregivers. Uncertainty and anguish characterize this process. Several factors contribute to this uncertainty and agony, including interactions with healthcare providers. Family caregivers attempt to manage this developing awareness by hoping, pretending, and preparing for death. IMPLICATIONS FOR NURSING PRACTICE: Nurses need to identify processes to ensure that family caregivers' needs for information and support are given high priority and that supportive interventions identified are based on a sensitive understanding of the experience of the family caregiver. The processes may include assisting family caregivers to maintain hope, sustain social relationships, and make preparations for the death. Further research into how family caregivers use these strategies for managing their developing awareness of dying is required.

Taking care: caregiving to persons with cancer and AIDS.

The purpose of this study was to provide an in-depth description of Taking Care, one of the phases of a grounded theory (The Labor of Caregiving) of caregiving for families experiencing life-threatening illnesses such as cancer and acquired immune deficiency syndrome (AIDS). In-depth interviews were conducted with 26 family caregivers of persons with cancer and AIDS during a 4-month period. Grounded theory methodology served as the basis for data collection and analysis. Data were analyzed in terms of the strategies, consequences, and interactions involved in the caregiving experience. The strategies of Taking Care included these data themes: Managing the Illness, Facing and Preparing for Dying, and Managing the Environment. The consequences of Taking Care included the data themes Coming to Know One's Own Strength, and Personal Suffering. Interactions that occurred as a result of Taking Care included Responding to Family Relationship Issues, and Struggling with the Health Care System. Findings from this research reveal that family caregivers dedicate an enormous portion of their lives to caring for their ill family members. They experience their own form of suffering as they watch their loved one die. Some also find personal meaning in the experience and an awakening of their own strengths. One of the implications from these findings is the need for a partnership between health care professionals and the families providing care.

Needs and experiences of family caregivers during marrow transplantation.

PURPOSE/OBJECTIVES: To determine the information needs of family members of people undergoing marrow transplantation as well as their actions to meet those needs. DESIGN: Descriptive, cross-sectional, qualitative design. SETTING: Marrow transplant units in the Pacific Northwestern United States. SAMPLE: 19 adult family members of people who had undergone marrow transplants. METHODS: Researchers conducted four focus group interviews. Three served as data generation interviews, and the fourth served as the validation interview. A transcriptionist recorded the subjects' responses, which then were analyzed using constant comparative techniques. FINDINGS: Themes emerged from the data in five categories: (a) Preparing for Caregiving (seeking and acquiring health care, obtaining information and materials, and evaluating the validity of information), (b) Managing the Care (providing physical care, protecting, maintaining the patient's connection with life, and advocating), (c) Facing Challenges (personal and interpersonal stress, communication barriers with healthcare professionals, and healthcare system barriers), (d) Developing Supportive Strategies (community resources, personal and self-care resources, and healthcare system facilitators), and (e) Discovering Unanticipated Rewards and Benefits (personal growth and family cohesion). CONCLUSIONS: Family members, as well as patients undergoing marrow transplant, experience a unique set of information needs and demands as a result of this experience. However, these demands can be mitigated by actions that provide appropriate education strategies and foster a sense of caring and a nurturing way of interacting among the family, healthcare professionals, and the healthcare system. IMPLICATIONS FOR NURSING PRACTICE: Healthcare professionals need to acknowledge the caregiving role and actively involve and support the family caregiver throughout the transplant experience.

Understanding the caring relationship during marrow transplantation: family caregivers and healthcare professionals.

PURPOSE/OBJECTIVES: To understand the caring relationship that family caregivers of marrow transplant recipients wish to have with healthcare professionals within the context of Swanson's Caring Model. DATA SOURCES: Published articles, books, research results. DATA SYNTHESIS: This article describes how family caregivers of marrow transplant recipients experience caring relationships with healthcare providers within the context of the five caring processes identified by Swanson. Specific strategies for forming caring relationships with family caregivers are recommended. CONCLUSIONS: Healthcare professionals can enhance their caring relationship with family caregivers of marrow transplant recipients by embracing the five processes of Swanson's Caring Model: maintaining belief, knowing, being with, doing for, and enabling. IMPLICATIONS FOR NURSING PRACTICE: Strategies for forming caring relationships between healthcare professionals and family caregivers curing marrow transplantation include acknowledging family caregivers as individuals and providing clear expectations of the family caregiver role.

Educational interventions for family caregivers during marrow transplantation.

PURPOSE/OBJECTIVES: To make recommendations for the use of informational strategies and the development of resources for family caregivers of patients receiving marrow transplantation based on their identified informational needs. DATA SOURCES: Literature review and research that identifies informational needs of family caregivers of patients receiving marrow transplantation. DATA SYNTHESIS: Stetz, McDonald, and Compton described informational needs of family caregivers. The needs fell into five major categories: Preparing for Caregiving, Managing the Care, Facing Challenges, Developing Supportive Strategies, and Discovering Unanticipated Rewards and Benefits. CONCLUSIONS: Family members and close friends are assuming increasing responsibilities in providing care in the home for the patient during marrow transplantation. Much of this care occurs when the patient is being treated on an outpatient basis. The responsibilities are demanding and involve helping the patient access treatment, evaluate and deal with the stress of information, gain skills with complex procedures, manage symptoms at home, and communicate with healthcare providers. For this essential role, family caregivers need to be educated and supported by appropriate resources. IMPLICATIONS FOR NURSING PRACTICE: Family caregivers' need for information begins well before the patient's treatment is initiated at the selected center. Availability of accurate, specific written guidelines and personal contact is essential. Educational strategies that prepare family members before the caregiving skills are needed could include skill development, access to and use of resources, homecare management, decision making, and self-care.

1994 Oncology Nursing Society Research Priorities Survey.

PURPOSE/OBJECTIVES: To determine oncology nursing research priorities as well as the type of research needed to address these priorities. DESIGN: Cross-sectional survey design. SETTING: Mail-out survey with return, postage-paid envelope provided. SAMPLE: A random sample of 10% of Oncology Nursing Society (ONS) members who identified patient care as their primary functional area, the ONS leadership group (e.g., Board of Directors, all committee chairs), all doctorally prepared ONS members, and all members of the ONS Advanced Nursing Research Special interest Group (N = 2,178). METHODS: The questionnaire was based on prior ONS Research Surveys and updated to reflect issues or topics that currently are relevant to oncology nurses. MAIN RESEARCH VARIABLES: Priority ranking of 93 research topics organized into seven major categories. FINDINGS: Seven hundred eighty-nine surveys were returned, for a 36% return rate. The top 10 priorities according to the priority index were pain; prevention; quality of life; risk reduction/screening; ethical issues; neutropenia/immunosuppression; patient education; stress, coping, and adaptation; detection; and cost containment. CONCLUSIONS: The top 10 research issues can be used to develop priorities for the direction of research in oncology nursing. IMPLICATIONS FOR NURSING PRACTICE: The findings provide a basis for identifying trends in nursing practice. The fact that prevention, risk reduction, and detection appear in the top 10 suggests that nurses are moving toward a definition of practice that is not limited to managing symptoms of disease. These findings also provide guidance for forming health policy in cancer care.

Family goals as indicants of adaptation during chronic illness.

Families that successfully adapt to new situations have been found not only to appraise the situations as manageable but also to possess the necessary resources to meet the challenges. The purpose of this study was to determine the goals that families in which the mother had chronic illness identified for themselves and how these goals related to family functioning. A five-occasion, 15-month, descriptive longitudinal design was used to collect data. Data from occasions 2 and 3 were used to generate the coding scheme. This coding scheme was used to analyze the fourth-occasion data set, which is presented here. The sample at the fourth occasion consisted of 103 families in which the mother was diagnosed with breast cancer, diabetes, or fibrocystic breast disease. Content analysis of responses revealed 10 mutually exclusive categories of family goals: viability of children, cohesion, adaptation, boundary alterations, health maintenance, conflict management, individual achievements and pursuits, acquisition of possessions, financial stability, and family relocation. Types of goals identified did not significantly differ by disease type. The results suggest that family-system goals are relatively enduring and not readily discarded in response to health or illness disruption.

Survival work: the experience of the patient and the spouse involved in experimental treatment for cancer.

The unpredictable course of cancer and its treatment and the ability to adjust to these uncertainties may influence the psychological stress experienced by the patient and family as well as their ability to engage in coping activities. This study describes the experiences of patients--and their spouses--involved in experimental therapy for advanced cancer, including their decision to enter a clinical trial and the processes that contributed to the patients' continuation of treatment.

Alterations in perceptions of caregiving demands in advanced cancer during and after the experience.

Bereaved spouse caregivers (N = 65) studied during the time they were giving care were contacted a minimum of 6 months following the first interview to determine if perceptions of the demands of caregiving had changed over time. Thirty-one participated in the second phase of the study. Although managing the physical care was identified as most difficult during the time of caregiving, reflective thought about the difficulties in caregiving revealed that standing by or observing the slow deterioration of the ill spouse was perceived as most difficult. In addition, over 50% of the caregivers returning the survey at Time 2 reported personal regrets with respect to their ole as caregiver. These people wished they had sought out and utilized more resources to aid them in their caregiving activities. Recommendations for clinical work include: helping the spouses to: (a) recognize their own grief over the losses they incur, and (b) accept assistance from resources outside the home.

The relationship among background characteristics, purpose in life, and caregiving demands on perceived health of spouse caregivers.

Little is known about the impact on the family at home of managing the final course of cancer. Research to date has focused on the negative impact of physical caregiving on the caregiver's physical and emotional well-being. Limited information exists about other dimensions of the experience which may serve to buffer or prevent negative health outcomes. The purposes of this study were to examine the effect of personal meaning and the experience of caregiving on spouse caregiver health. Cross-sectional data were obtained from interviews with 65 spouse caregivers of persons with advanced cancer. Findings from the multiple regression analysis revealed that sense of purpose in life (Beta = .32, p less than or equal to .05) and the caregiver's level of uncertainty (Beta = -.46, p less than or equal to .01) were statistically significant predictors of health. The results of this study suggest that a stronger sense of purpose in life is positively associated with perceived health. Further, the finding that a higher level of caregiver uncertainty is negatively associated with health suggests the need for nursing interventions to assist caregivers to cope with their role.