Caring for someone who is ill is a ubiquitous behavior, common to our humanity throughout recorded time. So why do family caregivers deserve mention in a textbook of psycho-oncology if they are merely fulfilling a time honored human to human covenant? The answer is 2-fold. First, in our current era of healthcare, patients with cancer receive invasive diagnostic studies and aggressive treatment as outpatients, and then convalesce at home. As such, cancer family caregivers (who customarily receive little or no training from health professionals) are essential partners with the health care team, required to provide complex physical and psychological care, as well as help the patient navigate a complicated health care system and maintain the household (Blum and Sherman 2010). The intricacies of the cancer family caregiver role and responsibilities are demanding, therefore leading us to the second justification for focusing on family caregivers. We now have several decades’ worth of descriptive data that identify the consequences of fulfilling the role of caregiver (Given et al. 2004; Harding and Higginson 2003; Park et al. 2010). The increased morbidity and mortality incurred by cancer family caregivers, some of which will be briefly described in this chapter, imply the family caregiver can be, in effect, a second patient in need of care (Northouse et al. 2012).

Mood disturbances and psychological impairments are the most commonly explored variables in the cancer family caregiver literature. Researchers have used a variety of instruments to measure conceptual and diagnostic categorizations of psychological impairment, namely: anxiety, depression, stress, tension, strain, emotional well-being, and psychological distress (Williams and McCorkle 2011). The lack of a common metric makes it difficult to precisely assess the extent of psychological impairment among cancer family caregivers, and the subgroup of caregivers who are at greatest risk; however, it is noteworthy that, across almost all metrics, caregivers consistently have anxiety, depression, and psychological distress rates two or more times that of the general population (Kurtz et al. 2004; Grov et al. 2005; Grunfeld et al. 2004; Northouse et al. 2001; Williams et al. 2013). The lack of precision in the research literature around caregiver psychological impairment in no way obscures what is undoubtedly a major burden for cancer family caregivers. Several studies which concurrently measured psychological impairment in patients and family caregivers, found the family caregivers had higher rates of impairment than the patients with cancer (Braun et al. 2007; Kim et al. 2005; Matthews 2003; Mellon et al. 2006).

Cancer family caregiver mood disturbance and psychological impairment not only contribute to the caregiver’s personal suffering, but also impact their relationship with the family member with cancer, and the care they are able to provide that family member. A wealth of data, compiled in two meta-analyses (Hagedoorn et al. 2000; Hodges et al. 2005) show mutual, bidirectional influences on psychological distress among the patient-caregiver dyad. A recent prospective, longitudinal study of patients with stage III or IV lung, gastrointestinal, or gynecological cancers and their family caregivers looked at the relationships among spirituality, health-related quality of life, and physical and psychological functioning. As expected, caregiver depression was inversely related to patient physical quality of life. Of interest, patient spiritual well-being mediated the relationship between patient physical quality of life and caregiver depression (Douglas and Daly 2012).

Uncertainty is a constant companion for patients and family caregivers living with cancer throughout all stages of disease. Diagnosis, staging, treatment decisions, treatment related side-effects, disease and treatment monitoring, survivorship, recurrence, end of life—are all wrought with uncertainty and inflict turmoil on everyday life (Stajduhar et al. 2008; Temel et al. 2008). Patients and cancer family caregivers who are uncertain as to how the patient will feel or function in the near or distant future, have difficulty planning appointments, meals, work assignments, childcare responsibilities, social engagements, or vacations (Williams and Bakitas 2012). Essentially any activity or responsibility that takes planning requires a contingency because of the uncertainty of the patient’s well-being. Managing uncertainty is a formidable trial for many people and cancer family caregivers are no exception. A 2009 qualitative study queried 33 bereaved and current cancer family caregivers of critically ill patients about what they felt was important for them to prepare for death and bereavement. Several factors related to life experience and cognitive, affective, and behavioral dimensions emerged as important to the caregivers. Notably, the participants unanimously reported uncertainty (as it relates to medical, psychosocial, religious/spiritual, and pragmatic issues) as their principal challenge; and identified communication as the chief means of managing uncertainty (Hebert et al. 2009).

The crucible of cancer family caregiving is laden with uncertainty, identity disruption, and physical and emotional challenges, and therefore, potentially provides the ideal environment for spiritual and existential questions to arise (Murray et al. 2010; Williams and Bakitas 2012). The literature on cancer family caregiver spirituality is small but burgeoning, and indicates spirituality may have been a potently influential variable that was overlooked in earlier research.

In a large national study, the American Cancer Society’s Study of Cancer Survivors and Quality of Life Survey for Caregivers assessed spiritual wellbeing (defined as the ability to find meaning and peace) and its association with several patient and caregiver variables (Kim et al. 2011). Results show a significant association between spiritual wellbeing and mental health, for both patients and caregivers. Interestingly, when the caregivers in this study reported higher spiritual wellbeing, their family members with cancer reported better physical health. Determining whether patient physical health contributes to caregiver spirituality or vice versa, or if the relationship is bidirectional, awaits replication in longitudinal studies.

A recent small epidemiologic study of family caregivers to adults with advanced cancer enrolled in palliative care found all of the participants self-identified as “spiritual” and said their spirituality was a major means by which they coped with their family member’s illness (Guay et al. 2012). That said, more than half of the participants reported they had “spiritual pain” [defined as ‘a pain deep in your soul (being) that is not physical’ (Mako et al. 2006)]. Participants who identified as having spiritual pain were significantly more likely to have elevated levels of anxiety, depression, denial, behavioral disengagement, and dysfunctional coping strategies than participants who did not identify spiritual pain. Of note, only 21 % of participants reported receiving supportive pastoral care services.

Inherent in the family caregiver role is bearing witness to the plight of the person with cancer (Weitzner et al. 1999). The cancer family caregiver’s journey with their ill family member begins with the shock of diagnosis and travels through the exploration of treatment decisions, the stress of managing symptoms and treatment side-effects, to the uncertainty of survivorship or the challenge of end of life and death. Beyond their personal experiences at each of the phases of disease, the cancer family caregiver often has the added task of witnessing the ill family member’s ordeal of enduring aggressive care and its aftermath. The cancer family caregiver may have an intimate view of the patient’s physical pain and deterioration, emotional anguish, and delerium. The consequences of witnessing for the family caregiver have not yet been fully explicated. Qualitative studies speak to the brutal reality of what cancer family caregivers witness (Murray et al. 2010; Stetz and Brown 1997; Williams and Bakitas 2012). A few epidemiologic studies have linked cancer family caregiver witnessing to their development of post-traumatic stress disorder and major depressive disorder (Barry et al. 2002; Wright et al. 2010).