The Crisis of Cancer: Psychological Impact on Family Caregivers

February 1, 1997
Carolyn Cook Gotay, PhD

Oncology, ONCOLOGY Vol 11 No 2, Volume 11, Issue 2

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

Drs. Blanchard, Albrecht, and Ruckdeschel provide a whirlwind tour ofresearch on families and cancer. The article has an ambitious mission.It attempts to establish how cancer affects families, through a reviewof 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 providesuggestions 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 ofeach of these areas is necessarily limited, and some topics (such as culturalvariation and nontraditional family systems) are mentioned without beingdiscussed at all. Despite this drawback, Blanchard et al are to be commendedfor bringing this topic to the attention of the readers of ONCOLOGY. Itis hoped that this review will pique the interest of readers, who willturn to additional, more extensive reviews[1-3] and perhaps be encouragedto conduct research in this area themselves.

I would like to comment on several issues suggested by the paper. Psychosocialoncology literature as a whole has undergone tremendous growth in the pastdecade: For example, the number of MEDLINE citations for quality of lifein cancer (most of which focus on cancer patients) rose from 397 paperspublished between 1987 and 1989 to 990 papers for the period of 1993 to1995. However, 22 of the 43 citations in the Blanchard et al paper werepublished prior to 1990. I make this observation not to imply that theirliterature review is out of date; rather, it indicates that research activityrelated to families and cancer has received considerably less recent attentionthan have patient-focused studies.

Why the Lack of Attention to Family Concerns ?

Why should this be so? There are several reasons for the disproportionatelack of attention to family concerns. The first reason relates to the logisticsof doing such research. Patients provide certain advantages. They are relativelyeasily accessed, since they are inpatients, clinic attendees, and registrantson tumor registry lists. In contrast, identifying family members and findingan opportunity to approach them for research participation can be quitedifficult.

Even if family members can be reached, they may be reluctant to participate.A number of researchers have found study refusal rates higher for partnersthan for patients.[3] Such high refusal rates may stem from gender, sincemost of the family literature to date has been based on breast cancer,and men may be less interested in or comfortable with participating inpsychosocial research studies than are women. Elevated refusal rates mayalso derive from heightened role demands, since a partner must assume additionalresponsibilities during illness of a family member (as discussed by Blanchardet al). Consequently, the partner may have less time available for optionalactivities, such as research participation.

Other factors may also play a role. It is clear that conducting researchwith two or more people is difficult and time-consuming, which may limitresearchers' enthusiasm and abilities to embark on such studies.

Another factor that, in all likelihood, has limited research in thisarea is the overwhelming emphasis of national research priorities and thehealth-care system on patient care. For example, the success of cancerprevention 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-orientedcare, not for support of the family. If family members require psychologicalor psychiatric support, in most settings, they are seen by professionalswho are not part of the cancer care team. Until the needs of family membersare 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 spousesof cancer patient experience elevated levels of stress. This figure isremarkably close to other estimates of the long-term distress experiencedby breast cancer patients[4] and cancer survivors overall[J. Holland, personalcommunication, November 4, 1996]. The consistent finding that between onein five and one in three cancer patients and family members are likelyto experience persistent psychosocial distress raises an interesting question:How much of the dysphoria of the people who have difficulties can be attributedto the cancer experience, and how much would have occurred with any stressfulexperience? Answering this question requires assessment of marital andfamily functioning prior to the diagnosis of cancer. It may be that certainindividuals, dyads, and family units are predisposed to bad outcomes, regardlessof the stressor. It would also be worthwhile to compare family adjustmentin cancer to that in other chronic, life-threatening diseases, such ascoronary heart disease.

In addition, to disentangle the distinctive impact of cancer from stressorsin general, we need to understand the nature more about the distress experiencedby family members of cancer patients. Blanchard et al use the term "distress"rather broadly, but it is important to know whether the negative outcomesrelate to a particular mood state (eg, anxiety), are at a level where professionalevaluation is advisable (eg, psychiatric depression), or are limited tospecific areas of functioning (eg, sexuality).

The nature of the distress needs to be measured specifically enoughto know what kind of intervention is required and by whom it should beprovided. Many types of interventions may be appropriate for addressingthe needs of families dealing with cancer: These include individual counseling(directed at the patient, partner, children, parents), couples or familycounseling, informational and educational programs, support groups, telephone-basedcounseling and support, family weekend retreats, and sex therapy. As thereview by Blanchard et al indicates, the literature is unfortunately meagerin this area and is insufficient to provide guidance about the relativeefficacy 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 familyresponds to cancer. In their introduction, Blanchard et al mention thatfamilies can become stronger as a result of the cancer experience, butlittle more discussion is given to this point. It is vital for researchto pay attention to this population. By focusing on families who cope extraordinarilywell, we can gain an understanding of factors promoting well-being thatmay not be evident from a "deficit model." As researchers andclinicians, we can learn a considerable amount from the resilience of patientsand families who meet and surpass the challenge of cancer.

References:

1. Baider L, Cooper CL, Kaplan De-Nour AT (eds): Cancer and the Family.New York, John Wiley & Sons, 1996.

2. Kristjanson LJ, Ashcroft T: The family's cancer journey: A literaturereview. Cancer Nurs 17:1-17, 1994

3. Lewis FM: The impact of cancer on the family: A critical analysisof the research literature. Patient Education and Counseling 8:269-289,1986.

4. Glanz K, Lerman C: Psychosocial impact of breast cancer: A criticalreview. Ann Behav Med 14:204-212, 1992.