Changes in caregiver perceptions over time in response to providing care for a loved one with a primary malignant brain tumor.
ABSTRACT To examine how family members of patients with a primary malignant brain tumor transition into the caregiver role and how their perceptions of this transition change over time.
Neurosurgery and neuro-oncology clinics of a regional medical center.
10 family caregivers of patients with a primary malignant brain tumor.
A series of 11 open-ended questions addressing various aspects of the care situation were administered to each caregiver. The same questions were asked at baseline (within one month of the patient's diagnosis) and four months later. Content analysis was performed to identify themes among interviews.
Patient changes, caregiver adjustments, and accessing support.
Caregivers described difficulties stemming from the patient's tumor-related dysfunction and changes in their familial, occupational, and social roles. Support from family and friends was vital to caregivers' emotional health, but shock and fear were evident in all interviews. Becoming subsumed in the care situation was described as enmeshment. Caregivers reported difficulty in communicating with healthcare providers. When looking at change over time, three major themes emerged: Patient Changes: The New Normal; Caregiver Adjustments; and Accessing Support.
Caregivers require support in handling neurologic and physical sequelae, transitioning into new roles, and avoiding becoming enmeshed in the care situation.
This study underlines the importance of continuing research in this area to provide the necessary interventions that will assist caregivers and provide support throughout their loved one's disease trajectory.
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ABSTRACT: High-grade gliomas (HGGs) are the most malignant type of brain tumours. The 5-year survival is 10% and a significant part of the ongoing research aims to increase survival through surgical and oncological treatments. Accordingly, there is an increasing need for investigating the HGG trajectory in order to recommend specific guidelines for rehabilitative and supportive interventions. This study protocol (phase I) describes a longitudinal, qualitative, explorative and descriptive interview study of the life situation and need for rehabilitation among patients and their caregivers and a quantitative evaluation of health-related quality of life. Qualitative and quantitative data are collected in parallel, analysed separately and then merged. The finding of this study will, together with the existing literature, form the background for phase II, which is a feasibility study with a pre-experimental one-group design testing a rehabilitative and supportive intervention programme. The aim of this paper was to describe the design of an upcoming study. Interviews with 30 patients and 30 caregivers will provide information about how the life situation is experienced during the first year after being diagnosed with HGG. Quantitative measurements of quality of life, well-being and physical activity will provide additional information. More precisely, both qualitative and quantitative data will support the planning of the programme regarding the type of intervention(s), with or without supervision, the appropriate time along the trajectory, frequency, localisation, endpoint measurements and eligible patients and/or caregivers. According to the Research Ethics Committee, approval is not needed for phase I as it is a non-intervention part of the study. Ethical approval of phase II will be sought at the time where the content of the intervention programme has been developed. Dissemination will occur through presentation and findings will be published in peer-reviewed journals.BMJ Open 07/2013; 3(7). DOI:10.1136/bmjopen-2013-003183 · 2.06 Impact Factor
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ABSTRACT: Purpose/Objectives: To explore the survivor experience of adults who have been diagnosed three years or longer with a primary malignant brain tumor (PMBT).Research Approach: Qualitative using a biographical narrative approach.Setting: Six sites across the United States.Participants: Survivors of PMBTs (N = 35) and their family caregivers (N = 35).Methodologic Approach: Using a semistructured interview guide, survivors and caregivers were interviewed individually about their lives before and since the PMBT diagnosis. Thematic analysis was performed to identify themes.Findings: Stability in survivor lives disintegrated as a result of the changes experienced related to the tumor and its treatment. Those changes were profound and ultimately contributed to multiple losses in key areas of their lives. Over time, living with the diagnosis and its consequences required survivors and their caregivers to adapt to the new reality of their lives. Through the process of becoming a survivor, individuals were able to take back control of their lives. Adaptation required survivors to use internal and external resources as ways of coping with their new reality.Conclusions: People with PMBTs require support as they adapt to losses and changes that impact their lives. Assessment of specific changes that impact survivors' lives may be useful in guiding type of support given. Symptom management and mobilization of internal and external resources may lessen the life-changing impact.Interpretation: Nurses should capture symptom meaning during assessments and expand assessments to include social support systems. Instituting measures that facilitate survivor independence may lessen the impact of disability. The significance of symptom worsening over time requires additional research.Knowledge Translation: Restoring self-worth and taking control of their lives are critical concerns for survivors of PMBTs.Oncology Nursing Forum 05/2013; 40(3):267-74. DOI:10.1188/13.ONF.267-274 · 1.91 Impact Factor
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ABSTRACT: Shorter hospital stays and greater emphasis on outpatient care means that family members have the primary responsibility for supporting a person with brain tumor to manage the physical, cognitive, behavioral, and emotional effects of the illness and its treatment. Given the integral role of family caregivers, it is essential to understand their experience of the impact of brain tumor and their own support needs. Accordingly, this qualitative study aimed to investigate family caregivers' experiences of support and relationship changes in the context of brain tumor. In-depth interviews were conducted with 11 family caregivers (8 spouse/partner, 3 parents) of people with malignant or benign tumor. A thematic analysis of interview transcripts identified two major themes, namely, "Meanings of Support" and "Relationship Impacts." The Meanings of Support theme was characterized by intertwined and distinct support needs, varied expectations of support and factors influencing support expectations. The Relationship Impacts theme depicted mixed experiences of strengthened, maintained, and strained relations with the person with brain tumor. Overall, the findings highlight that there is considerable variability in caregivers' experiences and expectations of support and the impact of brain tumor on relationships. The implications of these findings for the provision of caregiver support are discussed.