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The Hidden Morbidity of Cancer: An Exploratory Study of Burden in Caregivers of Cancer Patients with Brain Metastases


Caregiving is a highly individualized experience. While numerous papers have been published on caregiver burden in the context of a variety of diagnoses and conditions, this paper presents the unique features of caregiving in cancer patients with brain metastases. Improved long-term survival of patients, concerns about disease recurrence or progression, the mileposts of the cancer experience (initial diagnosis, treatment, survivorship, recurrence, progression, and end of life), and the increasing complexity of cancer treatments add to the demands placed upon the caregiver of patients with brain metastases.

The aim of this dissertation was to explore the antecedents and outcomes of caregiver burden within the context of brain metastases using the Comprehensive Health Seeking and Coping Paradigm as a framework to describe the highly interactive relationship among the variables. The first paper derived from this dissertation is a literature review that describes the challenges of caring for a patient with brain metastases and highlights the implications for healthcare professionals. The second paper presents the analysis of the relationships between caregiver burden and the affective disorders anxiety and depression. It describes the higher risk of screening positive for anxiety and depression for caregivers who report increased schedule burden. The third paper examines the impact of the patient’s cognitive impairment on caregiver resilience and caregiver coping strategies. This paper reports the significant correlation found between the coping strategy acceptance and the two dimensions of the patient’s cognitive/behavioral status, i.e., patient’s memory problems and disruptive behavior.

Caregivers of patients with brain metastases are the hidden morbidity of cancer. While the healthcare industry has consistently recognized the contributions of caregivers, we have fallen behind in identifying and managing their needs. Healthcare providers need to continue to be perceptive of caregiver burden and be ready to administer the appropriate interventions that must be as unique and individualized as their experiences.

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