Blanchard et al provide an excellent review of the literature on the psychosocial adjustment of caregivers of the cancer patient. The importance of caregiver function and adaptation to the clinical status of the cancer patient is generally conceded, but the literature characterizing caregiver functioning lacks consistency and contains little or no investigation of how caregiver quality-of-life (QOL) issues specifically affect the state of the patient.
Thus, it is understandable that attempts to develop intervention strategies directed toward the family have not proved particularly successful. It is clear that many caregivers of cancer patients are distressed, but there is more speculation than data on what factors contribute to their emotional and functional impairments and how these caregiver impairments influence patient functioning. As a result, there is no clear indication at present as to which caregivers should be targeted for interventions, what form the interventions should take, and when would be the best time to institute them.
Factors Affecting Caregivers' Mood
As Blanchard et al describe, between 20% to 30% of caregivers develop mood disturbance. The factors affecting mood seem to be related mostly to the patient's stage of disease, length of the patient's treatment, and preillness adjustment of the family unit. It has been reported that the distress of the caregiver correlates with the distress of the patient. Women caregivers tend to be affected to a greater degree by their husband's emotional state, whereas the emotional state of the husbands of cancer patients appears to influenced to a lesser extent by their wife's mood.
We have found that, in general, patients underestimate the degree of their caregivers' emotional distress. There is a significant difference between the ratings patients ascribe to their caregivers on the Beck Depression Inventory, the state portion of the State-Trait Anxiety Inventory, and the psychological/spiritual subscale of the Ferrans and Powers Quality of Life Index compared to the caregiver's own ratings of their mood. In addition, fewer caregivers than patients endorse the positive aspects of the cancer experience, including increased family support, communication, and connectedness.
It is not known why patients underestimate the emotional distress of their caregivers. This could be a protective mechanism, as a full appreciation of the impact of the disease on their caregivers might be too burdensome for patients while they are also trying to cope with threats to their own life (denial or avoidance). Alternatively, it may be that patients are so focused on their own situation that they fail to notice its full impact on their caregivers.
Assessment of Caregiver QOL
Assessment of caregiver QOL has been hindered by the lack of adequate assessment tools. As Blanchard et al note, most studies have utilized interviews, study-specific questionnaires, or unidimensional measures of QOL. Many of the existing validated questionnaires that focus on caregivers were developed for dementia, and measure the amount of burden the caregiver experiences; one example is the questionnaire devised by Mohide et al. Many of these scales were developed without input from the individuals under study, which is not an optimal way to assess subjective QOL.
A QOL tool specifically addressing the concerns of caregivers of cancer patients is currently under development.[3,4] This questionnaire was developed from a list of caregiver QOL issues provided by the caregivers themselves, with additional areas of concern gleaned from patients and health-care providers. Concerns tended to be within the general categories of health and physical functioning, socioeconomic problems, psychological-spiritual concerns, and family issues. Issues that tended to be prominent for caregivers across types of cancer included increased responsibilities at home, stress due to worry over the patient's health, altered work schedule, and financial burdens.
Family and socioeconomic concerns tended to correlate quite closely between patients and caregivers, while patients tended to be less aware of the psychological issues that concerned caregivers, as noted above. In contrast, health-care providers tended to overemphasize the financial issues affecting caregiver QOL and focused less on the psychological and family issues than either the caregiver or the patient. Health-care providers also placed more emphasis on the possible deterioration of the caregiver's health during their care of the patient than did the caregiver.
Since caregiver QOL is understudied and poorly characterized, intervention strategies have been unsuccessful so far. This is undoubtedly due, in part, to the fact that some things can't be easily fixed; there is a continual disruption of the caregiver's schedule depending on the patient's stage of disease and treatment considerations. There also remain all of the usual stresses that families face daily, including financial problems and taking care of the needs of children or elderly parents. There is no consensus about the characteristics of individuals who might benefit from intervention, since some increase in depression and anxiety in the caregiver is expected and within the normal range of response, and criteria for inadequate coping and adaptation have yet to be defined. As Blanchard et al point out, studies that randomly assign caretakers to treatment or control groups have uniformly reported negative results.
It is of increasing importance to adequately assess caregiver functional and emotional status. Due to changes in health-care economics that often result in restrictive reimbursement of hospitalization, palliative, and supportive care, and other services, family members are becoming the major providers of care outside of the hospital setting. It has been demonstrated that psychosocial interventions can substantially decrease medical costs. If 30% of caregivers require psychosocial intervention, and no intervention so far has demonstrated efficacy, it can be expected that health-care costs for cancer patients may actually increase due to increases in crisis management and preventable medical visits.