The often overwhelming and unpredictable roles associated with cancer caregiving puts caregivers at risk for physical and psychological health problems. Utilizing secondary analysis, the purpose of this dissertation was to gain insight into cancer caregiver burden, especially when caregivers are engaged in the provision of specific symptom management interventions in addition to basic care. Particular attention was focused on caregivers of patients who did not respond to symptom management interventions in a 12-week trial (1R01 CA193706). This dissertation was conceptually guided by the Organizing Framework for Caregiver Intervention Model. Over the 12 weeks of the parent trial, there were two randomization points depending on the patient's response to the symptom of fatigue. First, all patients and caregivers (dyads) were randomized to four weeks of either reflexology or meditative practices. Patients who did not report decreased fatigue during the first four weeks (Phase I) of the study were referred to as non-responders. Non-responders were then re-randomized to four additional weeks (Phase II) of either the same therapy or the addition of the second therapy. This dissertation used a three-manuscript format. Manuscript one was a literature review of caregiver burden. Manuscript two was a secondary analysis examining associations between perceived baseline burden and caregiver socio-demographic characteristics, comorbid conditions, anxiety, and depression among caregivers who agreed to provide symptom management intervention for their cancer patients. A total of 349 cancer caregivers completed the baseline interview. The majority of caregivers (58%) were female, 61% were spouses/partners, and 73% resided with the patient. Being female, Asian, a spouse, employed, and having higher depression and anxiety were all significantly associated with lower self-esteem, higher schedule and higher health burden (12%-24% of explained variance in the multivariable models). Depression and anxiety were significant factors contributing to a greater lack of family support and higher financial burden, with 13%-18% of explained variance.Manuscript three was a secondary analysis from the same parent study that evaluated the level of perceived burden among caregivers who delivered one or two symptom management interventions to patients who were non-responders during Phase I of the parent trial. This manuscript included a subset of caregivers (n= 89) at the end of the 12-week parent study. Multivariable general linear modeling was used to assess the difference in caregiver burden. Two separate analyses were conducted for caregivers who: 1) began the study providing reflexology; and 2) began the study providing meditative practices. The results demonstrated a significantly lower level of caregiver burden at week 12 in the areas of lack of family support, schedule burden, and health burden among caregivers of non-responders who delivered meditative practice alone over 8 weeks, compared to caregivers who added reflexology during weeks 5-8. Whereas, there were no group differences in caregiver burden at week 12 were found between the two groups of caregivers of non-responders who were initially randomized to reflexology. Caregivers who were initially randomized to reflexology reported a greater schedule burden if they were employed versus unemployed at week 12. The results from these manuscripts advance science by demonstrating the predictive variables for caregiver burden in cancer caregivers before and after providing a nurse-designed symptom management intervention to patients. Caregiver burden assessment may help reduce the caregivers' risk of becoming hidden patients in the healthcare system.
Read
