Drs. Blanchard, Albrecht, and Ruckdeschel provide a whirlwind tour of research on families and cancer. The article has an ambitious mission. It attempts to establish how cancer affects families, through a review of studies that assess the psychological impact of cancer on family members. The article also tries to identify who is likely to suffer adverse effects, by examining analytic studies of risk factors. Finally, the authors provide suggestions on how to improve psychological outcomes for family members, through an analysis of the intervention literature.
Given the brevity of the paper, the authors' depth of discussion of each of these areas is necessarily limited, and some topics (such as cultural variation and nontraditional family systems) are mentioned without being discussed at all. Despite this drawback, Blanchard et al are to be commended for bringing this topic to the attention of the readers of ONCOLOGY. It is hoped that this review will pique the interest of readers, who will turn to additional, more extensive reviews[1-3] and perhaps be encouraged to conduct research in this area themselves.
I would like to comment on several issues suggested by the paper. Psychosocial oncology literature as a whole has undergone tremendous growth in the past decade: For example, the number of MEDLINE citations for quality of life in cancer (most of which focus on cancer patients) rose from 397 papers published between 1987 and 1989 to 990 papers for the period of 1993 to 1995. However, 22 of the 43 citations in the Blanchard et al paper were published prior to 1990. I make this observation not to imply that their literature review is out of date; rather, it indicates that research activity related to families and cancer has received considerably less recent attention than have patient-focused studies.
Why the Lack of Attention to Family Concerns ?
Why should this be so? There are several reasons for the disproportionate lack of attention to family concerns. The first reason relates to the logistics of doing such research. Patients provide certain advantages. They are relatively easily accessed, since they are inpatients, clinic attendees, and registrants on tumor registry lists. In contrast, identifying family members and finding an opportunity to approach them for research participation can be quite difficult.
Even if family members can be reached, they may be reluctant to participate. A number of researchers have found study refusal rates higher for partners than for patients. Such high refusal rates may stem from gender, since most of the family literature to date has been based on breast cancer, and men may be less interested in or comfortable with participating in psychosocial research studies than are women. Elevated refusal rates may also derive from heightened role demands, since a partner must assume additional responsibilities during illness of a family member (as discussed by Blanchard et al). Consequently, the partner may have less time available for optional activities, such as research participation.
Other factors may also play a role. It is clear that conducting research with two or more people is difficult and time-consuming, which may limit researchers' enthusiasm and abilities to embark on such studies.
Another factor that, in all likelihood, has limited research in this area is the overwhelming emphasis of national research priorities and the health-care system on patient care. For example, the success of cancer prevention and control efforts is judged by their effects on cancer incidence, mortality, and morbidity. Nowhere are effects on family members mentioned. Likewise, oncologists are generally reimbursed for patient care and patient-oriented care, not for support of the family. If family members require psychological or psychiatric support, in most settings, they are seen by professionals who are not part of the cancer care team. Until the needs of family members are viewed as central to the missions of cancer care and cancer control, it is likely that research in this area will continue to lag behind.
Understanding the Stress Experienced by Family Members
Blanchard and colleagues estimate that approximately 20% to 30% of spouses of cancer patient experience elevated levels of stress. This figure is remarkably close to other estimates of the long-term distress experienced by breast cancer patients and cancer survivors overall[J. Holland, personal communication, November 4, 1996]. The consistent finding that between one in five and one in three cancer patients and family members are likely to experience persistent psychosocial distress raises an interesting question: How much of the dysphoria of the people who have difficulties can be attributed to the cancer experience, and how much would have occurred with any stressful experience? Answering this question requires assessment of marital and family functioning prior to the diagnosis of cancer. It may be that certain individuals, dyads, and family units are predisposed to bad outcomes, regardless of the stressor. It would also be worthwhile to compare family adjustment in cancer to that in other chronic, life-threatening diseases, such as coronary heart disease.
In addition, to disentangle the distinctive impact of cancer from stressors in general, we need to understand the nature more about the distress experienced by family members of cancer patients. Blanchard et al use the term "distress" rather broadly, but it is important to know whether the negative outcomes relate to a particular mood state (eg, anxiety), are at a level where professional evaluation is advisable (eg, psychiatric depression), or are limited to specific areas of functioning (eg, sexuality).
The nature of the distress needs to be measured specifically enough to know what kind of intervention is required and by whom it should be provided. Many types of interventions may be appropriate for addressing the needs of families dealing with cancer: These include individual counseling (directed at the patient, partner, children, parents), couples or family counseling, informational and educational programs, support groups, telephone-based counseling and support, family weekend retreats, and sex therapy. As the review by Blanchard et al indicates, the literature is unfortunately meager in this area and is insufficient to provide guidance about the relative efficacy of these approaches.
Understanding Positive Family Responses to Cancer
In addition to knowing about the problems experienced by family members, it is important to understand more about the positive ways that the family responds to cancer. In their introduction, Blanchard et al mention that families can become stronger as a result of the cancer experience, but little more discussion is given to this point. It is vital for research to pay attention to this population. By focusing on families who cope extraordinarily well, we can gain an understanding of factors promoting well-being that may not be evident from a "deficit model." As researchers and clinicians, we can learn a considerable amount from the resilience of patients and families who meet and surpass the challenge of cancer.