ABSTRACT: Cancer causes changes in the family's identity, roles, and daily functioning. Studies document that spouses are as distressed as cancer patients and that spousal and patient distress are correlated. Three major areas of caregiver concern are: fear of cancer and its spread, helping patients deal with the emotional ramifications of the disease, and managing the disruptions caused by cancer. From 20% to 30% of partners suffer from psychological impairment and mood disturbance as a result of the spouse's cancer. Factors that may predict high levels of spousal distress include: disease stage; emotional adjustment of the patient; gender, age, and other characteristics of the spouse; marital adjustment; and family functioning. Studies show that interventions do not reduce spousal distress. Future studies should explore the role of mediating factors, such as coping style, marital adjustment, and family functioning, on the relationship between illness demands or prognosis and distress. Interventions could then be targeted to high-risk individuals. [ONCOLOGY 11(2):189-194, 1997]
"Families matter. They matter because they provide the context of adjustment in which the person with cancer responds to his or her disease. This context is known to affect self-care behaviours and adjustment. Families also matter because family members, and not just the patient, are directly confronted with the illness experience."
When a person develops cancer, it is family members who provide the context for this experience, but they themselves are often profoundly affected by the disease. This article will focus on the second reason that families matter—the impact that cancer has on the entire family. This impact has been compared to the result of dropping a stone in a pond. The illness causes a ripple effect that results in changes to the family's identity and to daily routines.
These changes have long-lasting effects, regardless of the outcome of the disease. Although the effects generally are perceived to be negative, involving different types of losses, it should be remembered that many families describe the positive effects and resulting strengths of coping with the crisis of cancer.
For many years, studies on cancer-related stress focused on patient adjustment, with little attention paid to the family, except for how the social support given (particularly by the spouse) affected patient adjustment (see reference 2 for reviews of this subject). During the 1970s and early '80s, descriptive studies provided evidence that family members of the cancer patient also suffer from stress. These studies, conducted in spouses (primarily of breast cancer patients), documented that partners often experience sleep disturbances and eating disorders, heightened anxiety and depression, a pervasive sense of helplessness, and fears about cancer and its treatment.
These investigations highlighted the need for additional research. Reports then began to use standardized instruments to quantify the level of stress experienced by spouses. Results of these studies reinforced the earlier findings by reporting that spouses were as distressed as patients[7,8] and that levels of patient and spousal distress were correlated,[9,10] so that when one was having difficulty adjusting so was the other.
Having documented that caregivers experience stress, several investigators turned to an examination of the specific concerns of families of cancer patients. In a recent review of the literature on caregiver needs, Northouse and Peters-Golden concluded that these concerns can be categorized into three basic areas. The first and major concern is fear of cancer and its spread. Spouses worry about the extent of disease at the time of diagnosis and about the ultimate outcome.
In a recent study of spousal care-givers, Toseland, Blanchard, and McCallion reported that fear of the spouse dying was the major concern of spouses, even when the patients were essentially asymptomatic. Similarly, in a study of breast cancer patients and their husbands, Northouse found that an even greater concern among patients and husbands than the loss of a breast was the fear of cancer itself. The sense of unpredictability and heightened uncertainty of the disease course and the experience of the disease itself add to the lack of control and resulting helplessness felt by the patient and spouse.
The second category of concern relates to helping the patient deal with the emotional ramifications of the disease. Zahlis and Shands and Toseland, Blanchard, and McCallion have documented that dealing with the patient's emotional needs is one of the most difficult areas for the spouse. Spouses often do not know how to help and may feel unprepared to meet the patient's demands. They may also deny their own feelings while trying to provide support for the patient. This can result in heightened anxiety and depression. The emotional needs of other well family members also pose challenges for the spouse, particularly when the couple has young children.
The third area of concern relates to managing the disruptions in family routines and daily living caused by the cancer. Many spouses must assume additional responsibilities and balance these duties with any needed care of the patient, as well as with other roles and duties outside of the home. Oberst and James found that almost half of the spouses of newly diagnosed cancer patients "complained" of disruptions in their employment, household and child-care schedules, and recreational and domestic activities. Providing needed transportation to therapy or assisting in the management of side effects means the disruption of daily schedules for spouses as well as patients. Furthermore, daily routines and schedules may need to be rearranged as often as the disease status changes.
If the patient is able to assume previous roles, he or she may feel more in control and more "normal." If roles cannot be reassumed, others will need to assume the duties and roles that the patient held in the household system. If some family members prefer the new arrangement, it may be difficult to return to the old routines. This may be a relief to the patient or it may make the patient feel like he or she is needed less or is a burden.
In a review of studies of family caregiver needs, Laizner et al suggested various barriers that may prevent caregivers from successfully addressing these concerns. These included lack of awareness or knowledge, financial constraints, stigma of accepting help, family resistance, transportation issues, depletion of existing services, and incongruent goals between the health-care providers and the patient.
Given the impact of cancer on every aspect of the family's life, it is not surprising that most studies have documented that family members experience significant distress. Although the majority of spouses appear to adapt to the stress of cancer without exhibiting clinically significant levels of psychological distress, it is estimated that a significant minority of spouses, 20% to 30%, suffer from mood disturbance and psychological impairment.[3,14,17]
Toseland and colleagues reported that cancer patients and spousal caregivers were significantly less depressed than psychiatric inpatients but were significantly more depressed (as measured by the Center for Epidemiologic Studies Depression Scale [CES-D]) than samples of people in the community who did not have cancer. The Dyadic Adjustment Scale was used to assess the impact of cancer on the marital relationship of participants. Both spouses and patients reported significantly lower scores on marital consensus, marital satisfaction, and marital cohesion when compared to a community sample of married respondents. State anxiety (measured by the State-Trait Anxiety Inventory [STAI]) was assessed for spousal caregivers only and was found to be significantly greater than the values reported in a community sample.
Interestingly, even though the spouses in the study by Toseland et al were more distressed than samples of people from the community, the spousal caregivers in this study felt that they were dealing effectively with their major concerns (fear of the patient's dying, living with uncertainty, and meeting the patient's emotional needs). Similar findings were reported by Carter and associates. Although they found breast cancer patients and spouses to be maladjusted on measures of marital adjustment, videotapes of interactions, as well as individual measures, did not support these findings. Perhaps the spouses in these studies were reporting normal responses to a life-threatening illness.
Northouse and Peters-Golden have suggested that the stress of can-cer extends over time for caregivers. Northouse found no change over 18 months in husbands' level of distress despite improvements in mood and role functioning. In a study of spouses of patients with lung, breast, or colon cancer, Ell, Nishimoto, and Mantell reported that partners experienced an increase in levels of distress from diagnosis to 1-year follow-up. These results can be explained, at least in part, by a study by Oberst and Scott, which found that stress levels of spouses varied, depending on the ongoing demands of the illness.
The changing demands of the illness have led Lewis to suggest that psychosocial transitions occur as the family attempts to cope with the disease. These transitions include a new pattern of communication within the family, the development of new self-concepts by each family member, the relinquishing of old roles and the assumption of new ones, shifts in status and social structures affecting the person or the family experiencing cancer, and the management of the family's routines, patterns, and basic maintenance functions in light of the demands of the illness.
Given that not all spouses experience clinically significant psychological distress, researchers have turned their attention to identifying factors that may predict those at highest risk for distress. Two major factors have been identified: illness-related variables and contextual variables (Table 1).
Disease Stage—In view of the central importance of stage of the disease on treatment and prognosis, it is not surprising that this factor relates to psychological distress. (For a review of the literature relating to shifts in family issues across disease stages, see reference 22.) Studies have consistently shown a close association between disease stage and emotional distress. Not surprisingly, more severe mood disturbances and feelings of being overwhelmed have been found in partners of patients with advanced disease, as compared with spouses of those with localized disease.[6,10,19,23] Mor, Guadagnoli, and Wool concluded, "The burden of caretaking in the context of extended illness, advanced stage of cancer, and poor prognosis not infrequently leads to emotional conflict, strain, and guilt."
At present, it is impossible to ascertain whether the psychosocial problems are related to increased caregiving responsibilities or to the anticipated loss of the loved partner. Commenting on the inconsistent impact that the duration of the illness has had on distress, Sales and associates suggested that the length of the terminal illness rather than the time since diagnosis may be the more important factor contributing to the distress.
The impact of cancer treatment on the spouse has been studied primarily for breast cancer. Although the focus has often been on the impact of surgery on the couple's intimate relationship, radiation therapy and chemotherapy each create disruptions in daily routines, uncertainty about the outcome, and, often, difficult side effects. Studies are inconsistent with regard to the problems associated with adjuvant chemotherapy, but difficulties appear to increase with the length of treatment, whether it be given for cure or palliation.[25,26] It may be that disruptions in normal routines cannot be tolerated after a limited amount of time.
Patient's Emotional Adjustment—The spouse's emotional state is related closely to the patient's emotional adjustment throughout the illness. Corresponding levels of distress have been found in breast cancer patients and their spouses, as well as in colon cancer patients and their spouses.[7,27] Thus, Wellisch et al concluded that patient adjustment may be a major determinant of family adjustment. However, this relationship between patient and spousal adjustment may be mediated by other factors. For example, both patient and spouse may be responding to an increase in symptoms, a poor prognosis, or other factors in their relationship.