Over the past year, approximately 52,140 new cases of cancer of the oral cavity, pharynx, and larynx (which comprise most head and neck squamous cell carcinomas [HNSCCs]) will have been diagnosed in the United States.1
Due to the location of the tumor and subsequent treatment, many of these patients will experience significant functional impairment. Functional deficits might include increased pain, problems with eating and swallowing, dry mouth, and speech impairment, while psychosocial changes can include heightened levels of anxious and depressive symptoms, decreased quality of life (QOL), and fewer social interactions.2–5
Such deficits can occur regardless of treatment success and may persist over many years.3,6,7
As a result, relatives and friends, commonly known as informal or family caregivers, often become an indispensable part of a patient’s support team during the treatment and post-treatment period.8
The emotional challenges of caregiving have been extensively investigated in other medical contexts, such as that of the aged, demented, or those with advanced cancer. This literature indicates that caregivers often report experiencing deficits in psychological health and functioning, which has been defined as encompassing emotional distress and depressive and anxious symptoms.9–11
In addition, prior research suggests that a variety of factors may contribute to caregiver psychological health. Many of these factors are described within the conceptual framework developed by Sherwood and colleagues,12
which proposes that caregiver psychological health outcomes (defined as including emotional distress, depressive symptoms, and anxious symptoms) are affected by both patient disease characteristics (e.g., disease stage, time since diagnosis, patient functioning and needs) and caregiver personal characteristics and resources (e.g., sociodemographic factors, social support). Further, while patient disease characteristics may directly contribute to caregiver psychological health, caregiver characteristics may either directly impact psychological health or moderate the association between disease characteristics and caregiver psychological health.
Understanding the psychological health of caregivers, and any contributing factors, is a critical undertaking given that caregiver psychological health has implications for the caregiver’s own quality of life (QOL), physical health, and ability to provide on-going care.13–16
The extant literature (primarily dementia-related) also illustrates that the psychological health of caregivers is associated with patient health outcomes, including patient utilization of health care services.17–21
Specifically, higher levels of caregiver perceived burden (i.e., how “burdened” or encumbered a caregiver feels when taking care of another person) and depressive symptoms have been shown to be directly and indirectly associated with a greater probability of placing a patient in a nursing home.22–26
In contrast, the provision of caregiver interventions, which included elements to address caregiver psychological health, was associated with delays in nursing home placement and reduced mortality among patients.20,27–29
Further, moderate and severe caregiver perceived burden and low quality of life (QOL) were reported to be early predictors of prolonged hospital stays among patients.19
Hence, a greater understanding of the factors that contribute to caregiver psychological health may have important implications not only for improving caregiver outcomes, but also for patient outcomes and the healthcare system (see ). Yet, as new and targeted therapies are enabling more patients to live longer with their cancers, relatively little attention has been focused on caregiving within the cancer context, and specifically within the domain of HNSCC, despite the considerable challenges of assisting HNSCC patients. Therefore, the purpose of this review article was to assess prior empirical data regarding the psychological health of HNSCC caregivers. In addition, guided by the conceptual framework described by Sherwood and colleagues,12
we examined whether patient disease characteristics and caregiver personal characteristics and resources were associated with caregiver psychological health. The specific research questions to be addressed include:
- What is the psychological health of HNSCC caregivers?
- What factors are associated with deficits in psychological health among HNSCC caregivers?
Implications of caregiver well-being on caregiver outcomes, patient outcomes and healthcare utilization.