Although PMBTs are relatively rare, the mortality rate is high, accounting for more than 12,000 deaths per year in the United States (Chandana, Movva, Arora, & Singh, 2008
). Glioblastoma multiforme tumors are the most frequently diagnosed PMBTs, with a survival rate often less than one year (Ishihara et al., 2008
). PMBTs may cause severe physical, neuropsychological, and neurologic dysfunction, reducing the patient’s ability to perform usual activities and meet occupational, financial, familial, and social roles (Sherwood et al., 2006
). Decline in memory, information processing, and attention are a few of the cognitive changes that may occur when undergoing treatment for PMBTs. Even after aggressive treatment, cognitive dysfunction is likely to persist (Chandana et al., 2008
) as a result of permanent neuronal damage from surgery, cerebral edema during treatment, radiation necrosis, or other factors. Such deterioration in cognitive functioning affects the patient’s ability to fulfill his or her previously held roles (Fox, Mitchell, & Booth-Jones, 2006
). Caregivers often assume additional roles to ensure financial, familial, and household stability.
has described the care situation as a “biopsychosocial process,” meaning that caregiver perceptions of the care situation, as well as the ability to fulfill the caregiver role, will directly affect psychological health. The distress that accompanies demands placed on caregivers of those with cancer has been well documented (Schumacher et al., 2008
). Family members often assume multiple responsibilities, such as providing physical care and emotional support, managing symptoms, and coordinating healthcare appointments (Stajduhar, Martin, Barwich, & Fyles, 2008
). Unfortunately, many family members feel inadequately prepared to cope with care demands (Schumacher, Beidler, Beeber, & Gambino, 2006
). Schumacher et al. (2006)
described the dual meaning of care demands. A care demand may not necessarily act as a stressor; instead, demands are relabeled as care needs
that may or may not act as stressors for the caregiver. Whether something is viewed as a stressor depends on the degree to which caregivers are prepared for given situations as well as their ability to cope. Stajduhar et al. (2008)
examined caregivers’ ability to cope during end-of-life care of a loved one with cancer. Caregivers reported that they were better able to cope when patients were aware and accepting of their illness and when they demonstrated appreciation for their work. Other factors that influenced caregivers’ ability to cope were having a supportive social network, having early access to information, and knowing that the home healthcare system would support them in difficult times.
Literature has shown that physical health can be affected by an individual’s accessibility and quality of social support networks. The risk of mortality may be lower for those with a wider network of high-quality social support. However, the type of support needed within networks may depend on the situation (Reblin & Uchino, 2008
). In Australia, Janda, Eakin, Bailey, Walker, and Troy (2006)
used qualitative analysis to examine responses from patients diagnosed with a brain tumor and caregivers who were using a support service and inquired about what services would have been helpful and whether they had difficulty obtaining information about caring for a loved one with a brain tumor. Caregivers reported that they wanted help in the following areas but were unable to obtain assistance: acquiring information about the diagnosis and treatment process, methods of coping, support from family and friends, and support with financial issues and preparing for long-term care. In neuro-oncology, caregiver support varies in the disease trajectory. Janda et al. (2006)
found that patients who survived one year following diagnosis became better able to complete tasks and resume some of their personal care needs. Although the findings are similar to the needs that are addressed by other cancer populations, some are unique to the brain tumor population, such as managing difficult behaviors and emotional lability.
Previous studies in neuro-oncology family caregiving (and in most family caregiving in other populations) have been quantitative. The nature of quantitative research precludes a deeper understanding of caregiver stress—data that are vital for planning and implementing interventions. Research has shown that the use of qualitative analysis gives more detailed insight to the lived experience and may demonstrate the limitations of global clinical outcome measures (Happ, DeVito-Dabbs, Tate, Hricik, & Erlen, 2006
). The use of qualitative data supports the quantitative findings by providing a more detailed explanation of the caregivers’ experiences. That information would be influential when developing future interventions for caregivers to target specific needs throughout the patient’s disease trajectory. Although the previous studies have provided much-needed information regarding perspectives of caregivers’ stress and needs, information is limited about how distress emerges during the care trajectory. Without understanding the timing and initiators of caregiver distress, interventions to reduce distress are likely to be ineffective. The purpose of this analysis was to examine how caregiver responses to open-ended questions changed from the time of diagnosis to four months after diagnosis. The theoretical framework for this study was the Pittsburgh Mind-Body Center’s common pathways model adapted by Sherwood et al. (2008)
. In this model, the patient’s disease characteristics and caregivers’ personal characteristics determine the degree to which caregivers will perceive negative psychological outcomes during the care situation. These negative psychological outcomes may, in turn, affect the physiologic stress response and ultimately lead to poor overall health. Content analysis was used to identify themes and subjects of common interest across caregivers (Patton, 2002