Social Work in Health Care
ISSN: 0098-1389 (Print) 1541-034X (Online) Journal homepage: http://www.tandfonline.com/loi/wshc20
Psychosocial Oncology Research Karolynn Siegel PhD To cite this article: Karolynn Siegel PhD (1990) Psychosocial Oncology Research, Social Work in Health Care, 15:1, 21-43, DOI: 10.1300/J010v15n01_04 To link to this article: http://dx.doi.org/10.1300/J010v15n01_04
Published online: 26 Oct 2008.
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Psychosocial Oncology Research
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Karolynn Siegel, P h D
ABSTRACT. In recent years, increased attention has been paid to psychosocial aspects of cancer treatment, recovery and survivorship because oncology health professionals have observed that psychological and social variables can influence the medical outcomes and quality of life of cancer patients. A number of theoretical and conceptual frameworks which might guide research in this field are suggested. Next, several methodological issues of concern to psychosocia1 oncology researchers are examincd. This is followed by a discussion of recent important findings from psychosocial oncology research and of their implications for social work practice. Finally, recommcndations for future rescarch in the field are offered.
INTRODUCTION In recent years, growing attention has been paid to the investigation of psychosocial aspects of cancer treatment, recovery and survivorship. This development reflccts an increasing awarcness among oncology professionals of the diverse influences of social and psychological factors on the medical outcomes and quality of life of cancer patients. Thesc factors exert their influence directly and indircctly through their association with: preventivc health related behaviors (e.g., the willingness to undertake preventive behaviors, such as breast self-examination, pap test, smoking cessation, diet modifications); delay in secking treatment following the appearance of symptoms; compliance with treatment regimens; Karolynn Sicgel is Director of Research, Department of Social Work, Memorial Sloan-Kettering Cancer Center, New York, NY 10021. Direct correspondence to: Dr. Karolynn Siegel, 17 East 96 Street, Apt. 8D, New York, N Y 10128. Social Work in Health Care, Vol. 15(1) 1990 0 1990 by The Haworth Press, Inc. All rights reserved. 21
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coping behavior; the availability of tangible and emotional support; and family communication patterns. As research on these issues has proliferated, important insights have emerged concerning patient management and the facilitation of patient and family adaptation to the disease, its treatment and consequences. Nevertheless, much psychosocial oncology research is plagued by conceptual and methodological problems that compromise its potential significance and capacity to influence health care providers and policy makers. A number of theoretical and conceptual frameworks which might guide research in this field are suggested. Next, several methodological issues of concern to psychosocial oncology researchers are examined. Recent important findings from psychosocial oncology research and their implications for social work practice are discussed and, finally, recommendations for future research in the field are offered.
THEORETICALFRAME WORKS Research in psychosocial oncology has been largely atheoretical. That is to say, in the large majority of studies a unified theoretical perspective has not guided the selection of research variables and formulation of hypotheses about expected relationships among them. In part this circumstance may be attributable to the applied focus of much of this research with its emphasis on obtaining data relevant to an immediate clinical problem. Related to this, physicians, nurses, and social workers are often skeptical about the value of psychosocial oncology research. They question whether it is appropriate to burden already stressed patients and family members with participation in such research in view of the unclear benefits. To gain their cooperation, the psychosocial researcher often has to define the research in terms clearly and directly pertinent to a patient management or treatment problem they confront. Research framed in abstract concepts and elaborate theoretical frameworks is likely to be perceived as esoteric and irrelevant. Another factor contributing to the paucity of theoretically grounded research is that health care professionals are frequently the initiators of this research and yet their professional training may
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not prepare them for theoretically grounded research. On the other hand, university based academic behavioral scientists (e.g., sociologists, health psychologists, etc.), whose training emphasizes the central importance of theory to research often do not have acccss to patient populations that will allow them to test theoretical models. Finally is the influence of funding sources. They typically cxpcct the research they support to yield results with dircct clinical applications. They tend not to encourage research activities whose focus is theory building and refinement. Rather, applicd rcscarch is accorded priority. While research has not often been guided by theoryperse (i.e., a unified body of postulates which allows one to make predictions about the relationship among variables), theoretical concepts-such as social support, quality of life, stress, coping, sick role-frequcntly have been employed and related back in a general way to the theoretical and empirical literature. While researchers often contcnd that a theoretical orientation underlies their work, this orientation frequently proves to be vcry general, leading to a focus on broad sets of variables, but not suggesting the particular ones to be examined or specific hypothcscs about the nature of the relationships among them. While concepts and gencral orientations are parts of thcory, they are not themselves a theoretical framework (Merton, 1967). Clearly, all research need not be guided by theory to be useful. Furthcrmorc, empirical research can be the foundation for theory development. Nevertheless, progress toward the establishment of a cohcsivc body of knowledge in the field of psychosocial oncology will be significantly enhanced by theoretically grounded rcscarch. Theory bears on the development of fruitful empirical rcscarch in several ways that Merton (1967) has discussed. These include: (a) by interrelating seemingly disparate findings, it extends the scope of empirical findings; (b) by rccasting the empirical findings at a higher level of conceptualization, it allows their diverse implications to be more fully drawn out and successfully explored; (c) by providing a rationale, it offers a sounder basis for predictions than merc cmpirical extrapolation from previously observed trends; and (d) by specifying determinant relationships among variables, it reduces the need for post-hoc interpretations.
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Any number of theoretical frameworks might fruitfully be employed in psychosocial research depending on the questions to be addressed. For example, contemporary theories of adult development which have gained prominence and achieved considerable empirical validation can be extremely useful in guiding research on the individual consequences of having cancer (Erikson, 1963; Colarusso & Nemiroff, 1981; Levinson, 1978). Rather than merely documenting the impacts of a cancer diagnosis on functioning in various realms (e.g., work activities, family role performance, social relationships), using these theories, the researcher can conceptualize the problem as one of explaining how the experience and consequences of diagnosis and treatment compromise the accomplishment of normal age appropriate adult developmental tasks. In this framework, the identified impacts acquire much broader significance than would a mere set of documented changes in re-morbid functioning or adjustment. They can be understood as representing discontinuities in normal adult development. An adult development framework can also guide the selection of variables to be measured, which would obviously be linked to the developmental tasks at the different stages. Analyzing the data in terms of developmental stages rather than some relatively arbitrary, post-hoc age categories facilitates the interpretation of age-associated observed differences. Reference group theory also can be fruitfully applied to understanding cancer patients' adjustment to their illness. Such theory attempts to explain how individuals' attitudes and perceptions of their own functioning may be shaped by the "reference" they make to various groups they may belong to or aspire to join and how their self-appraisals may be influenced by making comparisons between themselves and others in similar circumstances (Festinger, 1954; Hyman and Singer, 1968). Cancer patients judgments of the adequacy of their own coping may be better understood and predicted by examining those to whom they compare themselves. The comparisons patients choose to make (i.e., upward comparisons with patients doing better than themselves, or downward comparisons with patients doing worse) may be viewed and studied as a coping strategy patients adopt in attempting to adjust to their illness (Tayw
lor, 19831. klso of considerable potential use would be theories relating to perceived personal control over events. Feelings of low control are
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a common source of anxiety and depression among cancer patients and their family members who often feel they can do little to influence the outcome of their treatment or disease course. Perceptions of personal efficacy or an ability to influence events are generally, therefore, likcly to be associated with greater psychological adjustment to such crises. Theories relating to (internal-external) locus of control (Lefcourt, 1981), and perceptions of self-cfficacy (Bandura, 1977), or conversely helplessness (Garber & Seligman, 1980), might be fruitfully employed to explain psychological adjustment to illness, compliance with treatment, and preventive health behavior. They provide a perspective for examining how personality and perceptions may mediate the impact of diagnosis of cancer (Kobasa, 1979; Kobasa et al., 1981). More general theoretical models that seek to cxplain the psychological impact of stressful life events can aid psychosocial rcsearchers to understand both patient and family members' adaptation to diagnosis and thc demands of treatment (Pearlin et al., 1981; Pearlin & Schooler, 1978). They can also help investigators to examine what makes an event stressful for the individual, and what aspects of it threaten or diminish self-esteem or sense of mastery, leaving thc individual vulnerable to depression. These models also attempt to explain the mechanisms through which thc impact of a stressful evcnt is mcdiated. Because coping and social support are key mediating variables in thcse models, these related bodies of theory are also rclcvant for explaining the psychological outcomes observed among individuals with cancer and their family members (Lazarus, 1966; Lazarus and Folkman, 1984; Cohen & Syme,
1985). Theoretical models that seek to explain the conditions undcr which individuals will try to reduce thcir risk of an illness can assist psychosocial researchers in studying canccr-rclatcd preventive hcalth behavior (e.g., smoking cessation, breast self-examination, mammography screening). The Health Belief Model (Kirscht, 1983) is the most widely adopted conceptual framework emphasizing the importance of the individual's perceptions of personal susceptibility, illness severity, and costs and bencfits of adopting the preventive behaviors. Langlie (1977) has attempted to integrate these components with thosc of the Social Networks Model, which stresses in addition the individual's interaction patterns and conju-
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gal structure. The role of fear in motivating behavior change has been incorporated into both the Fear Drive Model and the Dual Process Model (Leventhal, Safer and Panagis, 1983).
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METHODOLOGICAL ISSUES The development of an integrated body of theory and knowledge in any field requires a progression of research studies proceeding from descriptive studies, to correlational investigations,. to .predictive and explanatory studies (Siegel, 1983). ~s~chosocial oncology researchers, however, have often rushed to undertake explanatory investigations before the necessary preceding groundwork has been accomplished. Perhaps the catastrophic nature of the disease and its profound impact on patients and families create a sense of urgency to discover the causes of phenomena (e.g., psychosocial adaptation to cancer, service utilization, unmet needs) so that these factors may be favorably influenced. Or it may be accounted for by the generally lower value accorded to descriptive studies. There must be, ho\l;ever, a greater willingness to undertake the foundational descri~tiveand correlational studies that establish the Darameters of a phenomenon, permit the assessment of the utility of various measurements, and guide selection of variables for subsequent explanatory research. Similarly, there must be a greater willingness to carry out replication studies. In the absence of replication, too many interesting findings remain of questionable value because it is never established that they were not merely unique to the population under study or an artifact of some extraneous factor. Measurement problems abound in psychosocial oncology as in most fields of research. Perhaps the most significant relate to measuring patients' moods or affects, because these are frequently examined outcomes. Vegetative symptoms such as lethargy, sleep difficulties and weight loss, are almost always included in depression measures as indicators of depressive symptomatology. However, these symptoms may in reality reflect disease progression and treatment side-effects (Gottschalk, 1984). Some measures of anxiety present similar problems. These measurement problems can become pronounced when measuring change over time in patients' psychological status during disease progression (Mor & Guadagno-
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li, 1987). Until reliable and valid measures of affects are developed without items that may reflect somatic or organic changes, a completely satisfactory solution to such problems will not be achieved. Until then, a number of strategies for attempting to disentangle the somatic and psychological factors have becn suggcsted (Dcrogatis and Spencer, 1984; Mor and Guadagnoli, 1987; Endicott, 1984). Another problem is the use of different measures for thc same construct, such as "quality of life." While some measures of this construct are rather narrow in conception, others arc quitc broad. "Social support" is another example. Some studies employ instruments that tap only perceived support, others assess only obtaincd support, and still others assess both. Furthermore, some focus only on practical or tangible support, others only on emotional support, and still others on both. Studies adopting different mcasurcs of thc same concept in essencc measure different phenomena, or at least different domains of the same phenomena. This is undoubtcdly onc reason for inconsistent findings in a number of areas, especially in research concerning the quality of life of cancer patients. This problem of varying ~once~tu~aliza~ions and measurerncnts of kcy-concepts makes it difficult to meaningfully compare findings across studics. Without thc ability to make such comparisons, the discovery of patterns in the findings of various investigations is grcatly impeded. It would be extremely useful for a recommended set of "preferred" mcasurcs to be identified for frequently used variablks in psychosocial oncology research. While researchers must always rcserve the prerogative to choose the measures they regard as most appropriate to their purposes and populations, in the past their choices have frequently been based on prior familiarity with a measure or its easy accessibility. Many ncwcr rcscarchers to the field would undoubtcdly welcome the guidance of more senior investigators in selecting measures that retain their psychometric propcrtics among cancer paticnt populations, are acceptable to respondents, and do not impose excessive burden on patients and family members. At thc same time, however, psychosocial oncology researchers should avoid allowing the availability of established measures to dictate what variables will be examined. Based on their clinical
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experience, theory, or the literature, they should determine the crucial variables for understanding the phenomenon under study. If sound measures do not already exist they must begin the task of developing them. As Spinetta (1984) has pointed out, we must balance the tendency to focus on variables for which there are existing reliable and valid measures against the need to examine what is truly important. Another methodological problem is the tendency to aggregate cancer patients with diverse disease sites and stages forming heterogenous samples with different prognoses, and varying treatment regimens, side-effects and consequences. Study samples also often include patients who have lived with their disease for varying lengths of time, or have been off treatment for diverse intervals. This is often necessary to achieve an adequate sample size, especially when recruiting from a restricted patient population (e.g., from a single treatment setting). While the larger samples resulting from such heterogeneous inclusion may seem to enhance the power to discern meaningful relationships, in fact the underlying diversity may obscure meaningful relationships that would be observable in a more homogenous sample. Furthermore, rarely are there enough cases to permit meaningful subgroup analyses based on all relevant underlying factors (e.g., disease site, stage, treatment side-effects, time on treatment, time off treatment) or to control statistically for the confounding effects of this diversity. Respondent burden is another methodological concern that is particularly salient when dealing with cancer patients in active treatment who are likely to experience chronic fatigue as a consequence of the disease and treatment. Interview schedules or questionnaires should be kept as brief as possible to minimize the burden on the patient. Beyond the ethical concerns that dictate such an approach, respondent fatigue is likely to compromise the quality of the data obtained, especially toward the end of the interview or questionnaire. This means that researchers should avoid including multiple measures of the same attribute or measuring every potentially important variable in order that nothing important will be missed (Derogatis & Spencer, 1984). The responsibility exists to be selective and focused in the choice of measures. A careful review of the literature should help to identify variables most likely to be signifi-
cant. Small pilot studies or feasibility studies can also help to assess patients' difficulty or fatigue in completing the battery of measures.
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RECENT FINDINGS The advancement of psychosocial oncology has been hampered by the absence of agreed upon research priorities and a planned agenda of research to address central questions in the field. Consequently, while there has been a proliferation of published rcscarch in recent years, there are few issues about which a substantial body of empirical knowledge has developed. Even where this is the case, there has becn little tendency to build on previous findings. While researchers cite related previous findings as part of their literature rcvicw, they generally do not try to replicate them in other populations, refine or extend them, or systematically test a number of post-hoc interpretations that may have been offcrcd for the earlier results. The findings in many areas have often been contradictory, possibly owing to sample, conceptual, measurement and research design differences across studies. With these cautionary remarks in mind, a number of interesting recent findings and their implications for social work practice may be considered. Contact with Other Cancer Patients. First are those which concern the impact of contacts between fcllow cancer patients, both in self-help groups and one-to-one, on the problems they experience and on their cmotional well-being. Van den Dorne et al. (1986) reviewed the findings from six studies that examined the effects of patient contacts and employed a control group. Several studies with sound dcsigns revealed positive benefits from such interactions including: (aj more knowledge about breast cancer, greater use of a prosthesis, and better technique of breast self-examination (Stccchi, 1981); (b) greater reductions in negative affect (Spiegel et al., 1981); (c) fewer disturbances in body image (Farash, 1978); and (d) stronger improvement in perception of one's general health (Vachon et al., 1982). No evidence suggesting a negative effect associatcd with such contacts was reported in these invcstigations. [It should be noted that these studies were largely confined to breast cancer patients.] Van den Borne et al. (1987) studicd brcast cancer patients and lymphoma patients who had and had not had contact
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with ex-patients with the same illness. They found that regular contacts between fellow patients was associated with a decrease in negative affect (i.e., depression, anxiety and psychological complaints), enhanced self-esteem, and decreased feelings of uncertainty, especially among patients who did not receive adequate information from their physicians. Rogers et al. (1984) surveyed 652 women with breast cancer, and found that 90% of those who had seen a Reach to Recoveryvolunteer perceived the program as helpful. More than three-quarters said that, "just seeing someone who had recovered helped me feel that I could too." However, when the investigators examined whether participation in the program was associated with depressive symptomatology, fears of recurrence, concerns about disfigurement, or length of time required to return to normal activities, no significant differences were observed. These findings suggest the significant potential value of self-help and patient-to-patient volunteer programs for cancer patients. Such programs appear to benefit patients by: (a) destigmatizing and normalizing patients' conditions and problems; (b) making patient participants feel helpful to other patients; (c) suggesting coping strategies and modeling successful recovery; and (d) providing empathy and understanding through shared patient status (Christ et al., 1987).
While most mental health professionals are well aware of the rise of the self-help group movement in recent years, this valuable resource is still underutilized among cancer patients. Some professionals feel that the groups challenge their expertise and therefore resist their use. Others feel it undesirable for patients to have too much opportunity to compare their condition and adjustment with that of other patients, because they believe such comparisons may depress patients when they are doing worse than others or create guilt when they are doing better. There has also been a tendency for professionals to underestimate the meaningful benefits which patients derive from the opportunity to socialize with each other. Available evidence does not support such concerns, but rather suggests that self-help groups are used as a complement to professional assistance, not in place of it (Taylor et al., 1986). Given the lack of identifiable negative outcomes, available data suggests that
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social workers should facilitate the creation of self-help groups and patient-to-patient volunteer programs. The social worker is often the liaison between the hospital and patient volunteer groups, such as Reach to Recovery (mastectomy) and the Lost Chord or Ncw Voice Clubs (laryngectomy), and therefore is most readily suited to making the referral. The social worker can also educate physicians about the availability of this resource and its potential benefits. (In some places, the patient's physician must still provide writtcn permission before a volunteer is called.) The physician can be very influential in encouraging the patient to meet an ex-patient volunteer or participate in a self-help group. At Memorial Sloan-Kettering Cancer Centcr participation in a post-mastectomy support1 education group is prescntcd by the physician as a routine part of rehabilitative care. In an environment with few resources availablc for psychosocial programs, mutual support groups and patient volunteer programs offer a cost-effective strategy for assisting patients because of the limited professional involvement typically required. Since they are usually free or provided at low cost, these services are accessible to patients who could not afford more individualized or intensive professional intervention. Self-help modalities may also be rhe intervention of choice when the goal is to offer serviccs to all paticnts and not just those at high risk for maladaptation to their illness. The "resilient" paticnt may especially benefit from such assistance. In many mutual support groups a social worker may rcmain involved after the group is formed, but usually in a nondirective role. This is the case at Memorial Sloan-Kettering Cancer Center where the professional clarifies information and facilitates mutual support among participants (Christ et al., 1987). Social Support from Family and Friends. The influence of social support obtained from family and fricnds in the adjustment of cancer patients to thcir illness is a related issue that has received substantial research interest. That support, especially its emotional aspects, can mitigate the adverse psychological impact of the diagnosis and trcatmcnt, as has been demonstrated in a variety of studies and its benefits to patients are widely recognizcd (Wortman, 1984). What has becn less recognized is that research also docu-
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ments that certain kinds of putative support can be detrimental or distressing. For example, family members and friends often believe that it is supportive for them to appear unswervingly optimistic in their expectations about the patient's treatment and to distract him when he begins to express distressing or worrisome thoughts about his condition and outlook. Peters-Golden (1982) studied 100 breast cancer patients and 100 disease-free individuals. While the healthy individuals felt that it was important for cancer patients to remain as optimistic as possible, and two-thirds (66%) said they would "go out of their way" to cheer up a cancer patient, the patients found such attempts to gladden them as unhelpful. Another study found of pediatric cancer patients are often distressed by that the the attempts of others to be cheerful, optimistic and reassuring (Friedman et al., 1963). Similarly, Dunkel-Schetter (1981) found that cancer patients experienced as unhelpful attempts by family and friends to minimize the patients' problems and worries. Cancer patients are also vexed by attempts by others to distract them from talking about their disease because it is assumed such discussions are distressing to the patients. Peters-Golden (1982) found that cancer patients were upset and confused by the presumption that avoiding the subject of their illness would be better for them. Furthermore, there is evidence that the provision of support can undermine patients' autonomy and self-esteem. Many patients in the Peters-Golden (1982) study reported being made to feel incompetent by excessive attention and assistance from family and friends. They felt forced to accept unnecessary dependency on others. Findings from another study (Revenson et al., 1983) also suggest that in certain contexts, social support can threaten patients' autonomy and self-worth. Brickman et al. (1982) have also argued against an uncritical view of the benefits of social support. They contend that a "secondary victimization" of victims can occur when others make awkward or ineffectual efforts to help them. Clearly these findings imply that attempts at providing support by family members and friends of cancer patients will not always be experienced as beneficial or constructive by the patients, and may even distress them. While the provision of appropriate instrumental
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and expressive aid can be very useful in maintaining patients' physical and emotional well-being, paticnts also need to retain a sense of autonomy and compctcnce which some kinds of help can undermine. Social workers can counscl family members and friends on how to communicate with the cancer paticnt, stressing the need for open and realistic discussion about thc illness and its consequences. Thc workcr can also debunk myths and misconceptions concerning what kinds of interactions and communications (or noncommunications) are helpful to the patient. Family members and friends can be madc aware how their avoidance of certain topics rclated to thc patient's illness or attempts to distract the patient from thoughts of it may inadvertently cause him to feel abandoned and isolated. Thc worker should explain that verbalizing their anxieties, fears, and anger can help patients clarify their feelings and clicit advice for coping with their distress. The social worker can also offer advice on how to enable the patient to feel competent and autonomous. Patients greatly fear the debilitation and dependency that their illness and its trcatment may bring about. In addition, they may feel guilty about the burdens it places upon members of their social network. Family members and friends need guidance on how much to do for the paticnt. They must recognize that while they may feel it is best to rclicvc the patient of some role responsibilities because they believe he should not bc troubled by such mundane mattcrs, their actions may cause the patient to feel excluded or treated as if he wcrc not competent. Any illness, but especially cancer, can profoundly threaten self-esteem. It is generally not recognized that helping the patient to continue to feel as if he or she is a productive, indcpendcnt, and contributing family member is an extremely important form of cmotional support. Psychosocial Conseqwtlces of Cancer S~rnivorship.The psychosocial consequences of cancer survivorship is a final area in which a considcrablc body of research has accumulated, although available data are sometimes inconsistent. Generally, the research has failed to demonstrate an elevated prevalence of psychopathology among survivors. However, there is evidence that a general sense of vulnerability and mild anxiety or apprehension persists among a significant proportion of recovered cancer patients, which
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while not usually sufficient to impair daily functioning, can compromise a sustained sense of well being. In a study of 3 and 6 year survivors, Mages and Mendelsohn (1979) found that most reported little change in their level of dysphoric affect or nervousness, although chronic underlying feelings of uneasiness and vulnerability did emerge. Cella and Tross's (1986) study of male Hodgkin's disease survivors (6-140 months off treatment) revealed that the mean score of his patient group on a global index of psychiatric symptomatology was one stanhard deviation above that of the measure's principal normative nonpatient sample, but also nearly one standard deviation below that of a sample of 425 male psychiatric outpatients. Scores on the symptom index did tend to be higher among patients who had more recently completed treatment, although group differences were not statistically significant. Fobair et al. (1986) found that 18% of their survivors (1-21 years off treatment) had scores indicative of clinical levels of depression, a proportion comparable to that observed in general community samples. ~epressionscores were not correlated with time since treatment, but were significantly higher among survivors less than three years past treatment. Research demonstrates that fear of recurrence is virtually ubiquitous among recovered cancer patients, even years after treatment (Mages & Mendelsohn, 1979; Schmale et al., 1983; Shanfield, 1980; Koocher, 1984; Siegel & Christ, 1989). While there is some evidence that this concern diminishes over time as the individual remains disease-free, the consensus is that it never dissipates completely. Cancer survivors experience an enduring sense of wlnerability and of living a precarious existence. The latent anxiety can be quickly reactivated by such events as follow-up visits to the doctor, the appearance of new, unrelated symptoms, learning about sorneone experiencing a relapse, and hearing or reading about cancer in the mass media (Mages and Mendelsohn, 1979; Shanfield, 1980; Siegel & Christ, 1989). Koocher (1984) observed that anniversary reactions (e.g., emotional reactions at the time of the year when diagnosis was made or successful treatment ended) and developmental marker events (e.g., social events or achievements that un-
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derscore growth or advancement, such as graduations or marriages) may also rekindle feelings of uncertainty and anxiety about recurrence. Cancer patients frequently feel that their illness has left them "damaged" cvcn in the absence of visible mutilation. Shanfield (1980) found the survivors he studied experienced an enduring feeling of being damaged which they felt would be passed on to future generations. Such a subjective sense of impairment in recovered cancer patients often causes them to avoid intimate relationships and to fear rejection. Based on their study of survivors, Magcs and Mendelsohn (1979) concludcd that following cancer, intimate scxual relationships suffer even in emotionally well adjusted individuals. Thcy suggest that sexual activity makes the cancer survivor especially vulnerablc to poignant feelings of damage, defect, and loss. While the data on sex-related differences in adjustment to survivor is not consistent, the preponderance of evidence suggcst that women cope bctter with the illness and its treatment than men. In a study of survivors by Kennedy et al. (1976), males were obscrvcd to have higher mean stress reactivity scores than females. Mages and Mendelsohn (1979) found that, regardless of age, canccr seemed to have a more negative impact on men than women, the former being more likely to blame others for their difficulties and withdraw from social activities. Several kinds of psychosocial interventions arc suggested by the research findings on survivors. Facilitating open and constructive communication between the patient and hishealth carc providers is one important area for social work intervention. Physicians and other health-care professionals have tended in the past to be reluctant to inform patients about the thoughts, feelings and emotions likely to accompany the disease and its treatment. Some.have worried that discussing possiblc negative psychological reactions to their disease and treatment that may occur will cause paticnts to experience those emotions (Freidenbergs, 1981-82). Research shows this is unlikely, and furthcr, that patients appreciate anticipatory information and praise physicians for providing it to them. Most want information about their illncss and treatment, whether it
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be good or bad (McIntosh, 1974; Cassileth et al., 1980). In fact, they often express great anger about not having been prepared for the long term consequences of treatment. Information seems to allay anxieties and diminish the fear associated with uncertainty (Bond Johnson et al., 1984). Helping survivors anticipate feelings they may experience about their recovery, as well as certain reactions they may elicit from others, will enhance their sense of control over their lives and reduce their anxieties (Cassileth et al., 1980). Preparation and "normalization" of their experiences can prevent patients from perceiving themselves as coping poorly. Instead they will view their problems as common ones that can and need to be managed. Because many of the re-entry problems survivors will experience are predictable, their educational needs can be anticipated, making planned educational interventions possible (Mullan, 1984). Social workers can facilitate patient-to-patient contact among survivors. A veteran patient's experience provides a realistic view of treatment consequences and rehabilitation. The research on the benefits of fellow patient contact has already been discussed, and this seems a useful intervention modality among survivors as well. The data suggest that special efforts may be needed to reach out to male cancer survivors. Explanations proposed for why women may cope with survivorship better than men include that: women more readily seek out and use social support (Chapman et al., 1979); women are more accustomed to and therefore more accepting of bodily change (Mages and Mendelsohn, 1979); because selfreliance is a societal expectation for men, they experience greater distress over the dependency engendered by the illness (Mages and Mendelsohn, 1979). Whatever the reason, social workers should make special efforts to offer assistance to this often underserved population. FUTURE RESEARCH
Psychosocial research has frequently centered on investigating whether cancer patients experience a more compromised quality of life in various domains than other patient groups or healthy "nor-
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mals." A more relevant rcscarch focus might be the identification of barriers to maximal functioning during treatment and the most complete rehabilitation possible afterward. Whether cancer patients experience more or fcwer problems than other paticnts is probably less important than whether treatment and illness rclated problems can be prevented or mitigated with reasonably cost-effective interventions. Given the growing number of paticnts surviving for extended periods of time, relatively little rcsearch has directly addressed their long-term rehabilitation needs. While considerable rescarch has been carried out on thc impact of cancer and its treatment on patients' own quality of life, investigations of the family impact of the disease has been largely restricted to families of pediatric cancer patients; relatively little research has been carried out on the consequences of the illness for the members of the families of adult patients, especially young children. It is crnotionally threatening for children to witness the changes cancer and its treatment may bring about in their parents' appearance, mood and functioning. Their typical patterns of social interaction with peers may also be disrupted or considerably restricted by thc added responsibilities thc illness places on them, especially on adolescents who may be called upon to care for younger siblings. An issue that should be investigated is what are the sources of social support available to children when a parent is ill with cancer. To what extent do siblings, peers, teachers and non-related adults provide emotional and practical assistance to young children and adolescents? Another important area for future investigation concerns patterns of communication within families in which one member has canccr. Difficulties in communicating with those close to them about their illness have been among the most frcquently reported and troubling problems raised by cancer patients. The patterns of noncommunication or distorted communication in families can undermine thc very social relationships and support recognized as so important in cnabling the paticnt to cope. Open communication is integral to the provision of expressive support (Wortman & Dunkel-Schetter, 1979). Yet relatively little is understood about the patterns of family
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communication following diagnosis. What expectations emerge concerning which issues, topics or feelings will or will not be openly discussed? How are these prescriptions and prohibitions enforced? What beliefs do family members hold concerning what is helpful and not helpful to discuss openly with the patient? How do the patterns of communication change over the course of the illness? How do these patterns of communication interfere with the provision of mutual family support? If we could understand more about these issues we could begin to formulate interventions to promote better family communication. Caregiver burden is another issue that has not received adequate attention from psychosocial oncology investigators. It is already well known that the patient's illness imposes considerable demands upon hisher caregivers. In addition to the obvious financial burdens, there are the physical burdens of the actual caretaking, the social burdens of restrictions placed on social interaction and leisure activities, and the emotional burdens of watching the patient both endure the pain of the disease and aversive medical procedures and suffer disfigurement and debilitation. In recent years there has been much research on the benefits from social support to individuals confronting a stressful life event, but the consequences of being the provider of support have been much less studied (Wortman, 1984). As survival for cancer patients is extended, treatment is increasingly administered on an outpatient basis, and hospital stays are shortened; informal caregivers (usually the spouse, adult children or friends) are being called upon to provide more practical and emotional assistance over longer periods. What are the short and long term consequences for the spouse and other family members of being the primary care provider? What kinds of extrafamilial support do the spouse and other family members mobilize to help them cope with these burdens? What factors influence whether the spouse or other family members seek out support from outside the family for themselves? What determines a family's preference for formal versus informal sources of support? What kinds of support are most beneficial to them? And can support be detrimental, as when it undermines autonomy and fosters unnecessary dependency?
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A better understanding of the dimcnsions of caregivcr burden and how they can be mitigated would be extremely valuable. While the increasing availability of resources to assist families in coping with the burdens is gratifying, we also have to learn more about the barricrs to families accepting or making more extensive use of many of these services. Finally, our prevention work with families could profit from greater understanding of the unique problems arising in certain vulncrable family situations. Examples might be: the single parent family in which one member has cancer; foreign families with cultural beliefs, values and practices that make it difficult for thcm to accommodate to normal cancer carc practices followed in this country; and multigenerational cancer families. Each of these types of families confronts particular difficulties in coping with the impact of the illness on the family unit. Currently, we know very little about what special strategies for adapting to the stresses of the illness these vulnerable family units develop. What happens in divorccd families when one of its members becomes ill with cancer? How docs the fractured family unit respond to the crisis? The extraordinary sources of stress that can arise for a single parent with cancer or who has a child with cancer are obvious to everyone. The special anxieties and vulnerabilities evoked in children of divorce when one's custodial parent becomes ill with cancer are also self-cvident. Foreign families confront multiple problems as well. Languagc differcnces present barriers to obtaining support from medical staff or through participation in support groups. Differing customs, values or bcliefs regarding illness, its etiology and treatmcnt may make it difficult for these families to accommodate to the organization of medical care for cancer in our country or to scck out and obtain various kinds of assistance. If thc family has traveled from another country to receive treatment in the United States, their social ties have at least tcmporarily been disrupted which can deprive them of important sources of practical and emotional assistance. Multigenerational cancer families are vulnerable because their responses to the illness and expectations concerning its progression and treatmcnt may be patterned after those of grandparents, parents,
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aunts, uncles or other relatives either with the disease or acting as care providers. Certain shared beliefs about the meaning of the cancer in these families may be self-defeating in their efforts to cope with the disease. Dynamics relating to blaming other family members for one's disease, or guilt for having passed on a vulnerability to cancer are not uncommon.
CONCLUSION Psychosocial oncology research is a rapidly growing field of inquiry which has the potential to enhance our understanding of how to promote preventive health behaviors, foster compliance with treatment, and facilitate patients and family members' adjustment to the long and short term consequences of the treatment, recovery and survivorship. As a relatively new field it is still inventing and defining itself. To date there is no unifying theoretical perspective or dominant research paradigm to guide investigators, nor are there widely agreed on priorities for research. If the growing body of empirical research being conducted is to eventually amount to more than a collection of isolated studies, these issues must be addressed in the near future. While the challenges facing psychosocial oncology researchers are great, so are the rewards. The issues addressed are important, the methodological and conceptual problems are stimulating, and the opportunities to employ the insights gained to enhance the quality of life of individuals under exceptional stress are abundant. REFERENCES Bandura, A. Self-efficacy: Toward a unifying theory of behavioral change. Psychological Review, 1977,84, 191-215. Bond Johnson, J.L. & Blumberg, B. A commentary on cancer patient education. Health Education Quarterly, 1984, 10, 7-18. Brickman, P., Rabinowitz, V.C., Karuza, J., Coates, D., Cohen, E. & Kidder, L. Models of helping and coping. American Psychologist, 1982.37,368-384. Cassileth. B.R.. Zuokis. R.V.. Sutton-Smith. K. & March. V. Information and partickation'preiere&s among cancer paiients. Annals $lnfemal Medicine, 1980, 92, 832-836.
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Cella, D.F. & Tross, S. Psychological adjustment to survival lrom Hodgkin's disease. Journal of C o n s u l h ~ gond Clinical Psycholoa, 1986,54, 616-622. Chapman, R.M., Sutcliffe, S.B., & Malpas, J.S. Cytoxic-induced ovarian failure in Hodgkin's Disease 11: Effects on sexual funclion. Journal of the American Medical Associoiion, 1979, 242, 1882-1884. Christ, G., Bowlcs, M.E. & Bauman, L.J. Educalional and support groups for breast cancer patients and their families. In J.R. Harris, I.C. Henderson, S. Hellman & D.W. Kinne (eds.) Breasi Diseases. Philadelphia: Lippincon Co., 1987, pp. 648-656. Cohcn S. & Syme, L. Issues in the study and application of social support. In S. Cohen and L. Syme (eds.) Social Suppot? otrd Henlrlr. Orlando: Academic Press, 1985. Colarusso, C.A. & Nemiroff, R.A. Adult Development: A New Dinremion in Psychodynamic Theory ond Pracrice. New York: Plenum Press, 1981. Derogatis, L.R. and Spencer, P.M. Psychometric issues in the psychological assessment of the cancer patient. Cancer, 1984, 53(10 Supp.), 2228-2232. Dunkel-Schetter, C. Social Supporr and Coping wiih Cancer, Unpublished doctoral dissertation, Northwestern Universitv, 1981. Endicott, J. ~easu;ement of depression in &cnts with cancer. Cancer, 1984, 53(10 Supp.). 2243-2247. Erikson, E. & I d h o o d and Socieiy. New York: W.W. Norton, 1963. Farash, J.L. Effect of counseling on resolution of loss and body image disturbance following a masteclomy. Dissetintiort Abstrocis Iniemaiional, 1978, 38(8B), 4027.
Feslinger, L. A theory of social comparison processes. Hunton Relaiions, 1954, 7, 117-140. Fobair, P.A., Hoppe, R.T., Bloom, J.R., Cox, R., Varghcsc, A,, & Spiegel, D. Psychosocial problems among survivors of Hodgkin's Disease. Journal of Clinical Oncology, 1986, 4, 805-814. Freidenbergs, I., Gordon, W., Hibbard, M., Levine, L., Wolf, C., & Dillcr, L. Psychosocial aspects of living with cancer: A revicw of the lilerature. International Journal of Psychiatq in Medicine, 1981-82, 11, 303-329. Garber J., & Seligman, M.E.P. (Eds.) Human Helplessness: Theory and Applicalion. Ncw York: Academic Press, 1980. Gottschalk, L.A. Measurement of mood and affect in cancer patients. Cancer, 1984, 53, 2236-2241. Hyman, H. & Singer, E. Readings in Reference Group Tlteoq and Research. New York: Free Press, 1968. Kennedy, B.J., Tellegen, A., Kennedy S. & Havernick, Psychological response of palients cured of advanced cancer. Cancer, 1976, 38, 284-291. Kirsch~,J.P. Preventive health behavior: A revicw of research and issues. Health Psychology, 1983, 2, 279-301. Kobasa, S.C. S~ressfullife events, personality and heallh: An inquiry into hardiness. Journal ofl'ersonaliiy and Social Psychology, 1979, 37, 1-1I. Kobasa, S.C., Maddi, S.R., & Courington, S. Personality and constitution as
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havior, 1981,22, 368-378.
Koocher, G.P. The crisis of survival. In A.E. Christ & K. Klomenhaft (eds.), Childhood Cancer Impact on the Family. New York, Plenum Press, 1984. Langlie, J.L. Social networks, health beliefs, and preventive health behavior. Journal of Health and Social Behavior, 1977,18, 244-260. Lazarus, R. Psychological Stress and the Coping Process. New York: McGrawHill, 1966. Lazarus, R. & Folkman, S. Stress, Appraisal, and Coping. New York: Springer, 1984. Lefcourt, H.M. (Ed.) Research with the Locus of Control Construct. New York: Academic Press, 1981. Leventhal, H., Safer, M.A., & Panagis, D.M.The impact of communications on self-regulation of health beliefs, decisions, and behavior. Health Education Quarterly, 1983, 10, 3-31. Levinson, D. J. et al. The Seasons of a Man's Life. New York: Alfred A. Knopf, 1978. Mages, N.L., & Mendelsohn, G.A. Effects of cancer on patients' lives: A personological approach. In G.C. Stone, F. Cohen, & N.E. Adler (eds.) Health Psychology-A Handbook. San Francisco, Josey-Bass, 1979. Mclntosh, J. Processes of communication, information seeking and control associated with cancer: A selective review of the literature. Social Science and Medicine, 1974, 8, 167-187. Merton, R.K. On Theoretical Sociology: Five Essays, Old and New. New York: The Free Press, 1967. Mor, V. and Guadagnoli, E. Critique of psychosocial and behavioral measurement in cancer research. Paper presented at the Current Concepts in PsychoOncology and AIDS conference, New York, NY, 1987. Mullan, F. Re-entry: The educational needs of the cancer survivors. Health Education Quarterly, 1984, 10, 88-94. Pearlin, L.I., Menaghan, E.G., Lieberman, M.A., & Mullan, J.T. The stress process. Journal of Health and Social Behavior, 1981, 22, 337-356. Pearlin, L.I., & Schooler, C. The structure of coping. Journal of Health and Social Behavior, 1978, 19, 2-21. Peters-Golden, H. Varied perceptions of social support in the illness experience. Social Science and Medicine, 1982, 16, 483-491. Revenson, T.A., Wollman, C.A. & Felton, B. Social supports as stress buffers for adult cancer patients. Psychosomatic Medicine, 1983, 45, 312-331. Rogers, T., Bauman, L. & Metzger, L. Effects of peer support: Reach to Recovery and the Cancer patient. In P.F. Engstrom, P.N. Anderson & L.E. Mortenson (Eds.) Advances in Cancer Control Epidemiology. New York; Alan R. Liss, 1984. Schmale, A.H., Morrow, G.R., Schmitt, A., Adler, L.M., Enelow, A., Murawski, B.J., & Gates, C. Well-being of cancer survivors. Psychosomatic Medicine, 1983, 45, 163-169.
Shanfield, S.B. On surviving cancer: Psychological considerations. Comprel~onsive Psychia/ry, 1980, 21, 128-134.
Siegel, K. Research issues in psycliosocial oncology. Jourrlal of Ps)chosociol
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Oncology, 1983, 1, 101-104.
Sicgcl, K. and Christ, G.H. Psychosocial Consequences of Long-Term Survival of Hodgkin's Disease. In J. Redman, and M. Laclier (Eds.), Hodgkin's Disease: The Consequences oJSurvival. Philadelphia PA: Lea and Febiger, 1989. Spiegel, D., Bloom, J.R., & Yalom, I. Group support for patients with metastatic cancer-a randomized prospective outcome study. Archives oJ General P.ycliiatry, 1981, 38, 527-533.
Spinetta, J. Devclopmcnt of psychometric assessment methods by life cyclc stages. Cancer, 1984, 53(10 Supp.), 2222-2225. Stecchi, J.H. The effects of the Reach to Recovery Program on ~ h quality c of life and rehabilitation of women who had had a mastectomy. Unpublished rnanuscript, Boston University, Boston, 1979. Taylor, S.E. Adjustment to threatening events: A theory of cognitive adaptarion. American Psychologist, 1983, 38, 1161-1 173.
Taylor, S.E. Social support, support groups and the cancer paticnt. Juurnal of Clinical and Consuhing Psychology, 1986, 5 4 , 608-615.
Vachon, M.L.S., Lyall, W.A.L., Rogcrs, J., Crochane, J., Freeman, S.J.J. The effectiveness of psychosocial support during post-surgical treatment of breastcancer. Inlentational Journal ofP.i)~cItiarry Medicine, 1982, I / , 365-372. Van den Bornc, H.W., Pruyn, J.F.A. 6r Van Den Heuvel, W.J.A. Effects of contacts betwecn cancer patients on their psychosocial problems. P d e n t Education and Counieling, 1987, 9, 33-5 1.
Wortman, C.B. Social support and the cancer patient. Cancer, 1984, 5.1, 23392360.
Wortman, C.B., & Dunkcl-Schetter, C. Interpersonal relationships and cancer: A theoretical analysis. Journal oJSocial Issues, 1979, 35, 120-155.
ISSN: 0098-1389 (Print) 1541-034X (Online) Journal homepage: http://www.tandfonline.com/loi/wshc20
Psychosocial Oncology Research Karolynn Siegel PhD To cite this article: Karolynn Siegel PhD (1990) Psychosocial Oncology Research, Social Work in Health Care, 15:1, 21-43, DOI: 10.1300/J010v15n01_04 To link to this article: http://dx.doi.org/10.1300/J010v15n01_04
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Psychosocial Oncology Research
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Karolynn Siegel, P h D
ABSTRACT. In recent years, increased attention has been paid to psychosocial aspects of cancer treatment, recovery and survivorship because oncology health professionals have observed that psychological and social variables can influence the medical outcomes and quality of life of cancer patients. A number of theoretical and conceptual frameworks which might guide research in this field are suggested. Next, several methodological issues of concern to psychosocia1 oncology researchers are examincd. This is followed by a discussion of recent important findings from psychosocial oncology research and of their implications for social work practice. Finally, recommcndations for future rescarch in the field are offered.
INTRODUCTION In recent years, growing attention has been paid to the investigation of psychosocial aspects of cancer treatment, recovery and survivorship. This development reflccts an increasing awarcness among oncology professionals of the diverse influences of social and psychological factors on the medical outcomes and quality of life of cancer patients. Thesc factors exert their influence directly and indircctly through their association with: preventivc health related behaviors (e.g., the willingness to undertake preventive behaviors, such as breast self-examination, pap test, smoking cessation, diet modifications); delay in secking treatment following the appearance of symptoms; compliance with treatment regimens; Karolynn Sicgel is Director of Research, Department of Social Work, Memorial Sloan-Kettering Cancer Center, New York, NY 10021. Direct correspondence to: Dr. Karolynn Siegel, 17 East 96 Street, Apt. 8D, New York, N Y 10128. Social Work in Health Care, Vol. 15(1) 1990 0 1990 by The Haworth Press, Inc. All rights reserved. 21
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coping behavior; the availability of tangible and emotional support; and family communication patterns. As research on these issues has proliferated, important insights have emerged concerning patient management and the facilitation of patient and family adaptation to the disease, its treatment and consequences. Nevertheless, much psychosocial oncology research is plagued by conceptual and methodological problems that compromise its potential significance and capacity to influence health care providers and policy makers. A number of theoretical and conceptual frameworks which might guide research in this field are suggested. Next, several methodological issues of concern to psychosocial oncology researchers are examined. Recent important findings from psychosocial oncology research and their implications for social work practice are discussed and, finally, recommendations for future research in the field are offered.
THEORETICALFRAME WORKS Research in psychosocial oncology has been largely atheoretical. That is to say, in the large majority of studies a unified theoretical perspective has not guided the selection of research variables and formulation of hypotheses about expected relationships among them. In part this circumstance may be attributable to the applied focus of much of this research with its emphasis on obtaining data relevant to an immediate clinical problem. Related to this, physicians, nurses, and social workers are often skeptical about the value of psychosocial oncology research. They question whether it is appropriate to burden already stressed patients and family members with participation in such research in view of the unclear benefits. To gain their cooperation, the psychosocial researcher often has to define the research in terms clearly and directly pertinent to a patient management or treatment problem they confront. Research framed in abstract concepts and elaborate theoretical frameworks is likely to be perceived as esoteric and irrelevant. Another factor contributing to the paucity of theoretically grounded research is that health care professionals are frequently the initiators of this research and yet their professional training may
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not prepare them for theoretically grounded research. On the other hand, university based academic behavioral scientists (e.g., sociologists, health psychologists, etc.), whose training emphasizes the central importance of theory to research often do not have acccss to patient populations that will allow them to test theoretical models. Finally is the influence of funding sources. They typically cxpcct the research they support to yield results with dircct clinical applications. They tend not to encourage research activities whose focus is theory building and refinement. Rather, applicd rcscarch is accorded priority. While research has not often been guided by theoryperse (i.e., a unified body of postulates which allows one to make predictions about the relationship among variables), theoretical concepts-such as social support, quality of life, stress, coping, sick role-frequcntly have been employed and related back in a general way to the theoretical and empirical literature. While researchers often contcnd that a theoretical orientation underlies their work, this orientation frequently proves to be vcry general, leading to a focus on broad sets of variables, but not suggesting the particular ones to be examined or specific hypothcscs about the nature of the relationships among them. While concepts and gencral orientations are parts of thcory, they are not themselves a theoretical framework (Merton, 1967). Clearly, all research need not be guided by theory to be useful. Furthcrmorc, empirical research can be the foundation for theory development. Nevertheless, progress toward the establishment of a cohcsivc body of knowledge in the field of psychosocial oncology will be significantly enhanced by theoretically grounded rcscarch. Theory bears on the development of fruitful empirical rcscarch in several ways that Merton (1967) has discussed. These include: (a) by interrelating seemingly disparate findings, it extends the scope of empirical findings; (b) by rccasting the empirical findings at a higher level of conceptualization, it allows their diverse implications to be more fully drawn out and successfully explored; (c) by providing a rationale, it offers a sounder basis for predictions than merc cmpirical extrapolation from previously observed trends; and (d) by specifying determinant relationships among variables, it reduces the need for post-hoc interpretations.
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Any number of theoretical frameworks might fruitfully be employed in psychosocial research depending on the questions to be addressed. For example, contemporary theories of adult development which have gained prominence and achieved considerable empirical validation can be extremely useful in guiding research on the individual consequences of having cancer (Erikson, 1963; Colarusso & Nemiroff, 1981; Levinson, 1978). Rather than merely documenting the impacts of a cancer diagnosis on functioning in various realms (e.g., work activities, family role performance, social relationships), using these theories, the researcher can conceptualize the problem as one of explaining how the experience and consequences of diagnosis and treatment compromise the accomplishment of normal age appropriate adult developmental tasks. In this framework, the identified impacts acquire much broader significance than would a mere set of documented changes in re-morbid functioning or adjustment. They can be understood as representing discontinuities in normal adult development. An adult development framework can also guide the selection of variables to be measured, which would obviously be linked to the developmental tasks at the different stages. Analyzing the data in terms of developmental stages rather than some relatively arbitrary, post-hoc age categories facilitates the interpretation of age-associated observed differences. Reference group theory also can be fruitfully applied to understanding cancer patients' adjustment to their illness. Such theory attempts to explain how individuals' attitudes and perceptions of their own functioning may be shaped by the "reference" they make to various groups they may belong to or aspire to join and how their self-appraisals may be influenced by making comparisons between themselves and others in similar circumstances (Festinger, 1954; Hyman and Singer, 1968). Cancer patients judgments of the adequacy of their own coping may be better understood and predicted by examining those to whom they compare themselves. The comparisons patients choose to make (i.e., upward comparisons with patients doing better than themselves, or downward comparisons with patients doing worse) may be viewed and studied as a coping strategy patients adopt in attempting to adjust to their illness (Tayw
lor, 19831. klso of considerable potential use would be theories relating to perceived personal control over events. Feelings of low control are
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a common source of anxiety and depression among cancer patients and their family members who often feel they can do little to influence the outcome of their treatment or disease course. Perceptions of personal efficacy or an ability to influence events are generally, therefore, likcly to be associated with greater psychological adjustment to such crises. Theories relating to (internal-external) locus of control (Lefcourt, 1981), and perceptions of self-cfficacy (Bandura, 1977), or conversely helplessness (Garber & Seligman, 1980), might be fruitfully employed to explain psychological adjustment to illness, compliance with treatment, and preventive health behavior. They provide a perspective for examining how personality and perceptions may mediate the impact of diagnosis of cancer (Kobasa, 1979; Kobasa et al., 1981). More general theoretical models that seek to cxplain the psychological impact of stressful life events can aid psychosocial rcsearchers to understand both patient and family members' adaptation to diagnosis and thc demands of treatment (Pearlin et al., 1981; Pearlin & Schooler, 1978). They can also help investigators to examine what makes an event stressful for the individual, and what aspects of it threaten or diminish self-esteem or sense of mastery, leaving thc individual vulnerable to depression. These models also attempt to explain the mechanisms through which thc impact of a stressful evcnt is mcdiated. Because coping and social support are key mediating variables in thcse models, these related bodies of theory are also rclcvant for explaining the psychological outcomes observed among individuals with cancer and their family members (Lazarus, 1966; Lazarus and Folkman, 1984; Cohen & Syme,
1985). Theoretical models that seek to explain the conditions undcr which individuals will try to reduce thcir risk of an illness can assist psychosocial researchers in studying canccr-rclatcd preventive hcalth behavior (e.g., smoking cessation, breast self-examination, mammography screening). The Health Belief Model (Kirscht, 1983) is the most widely adopted conceptual framework emphasizing the importance of the individual's perceptions of personal susceptibility, illness severity, and costs and bencfits of adopting the preventive behaviors. Langlie (1977) has attempted to integrate these components with thosc of the Social Networks Model, which stresses in addition the individual's interaction patterns and conju-
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gal structure. The role of fear in motivating behavior change has been incorporated into both the Fear Drive Model and the Dual Process Model (Leventhal, Safer and Panagis, 1983).
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METHODOLOGICAL ISSUES The development of an integrated body of theory and knowledge in any field requires a progression of research studies proceeding from descriptive studies, to correlational investigations,. to .predictive and explanatory studies (Siegel, 1983). ~s~chosocial oncology researchers, however, have often rushed to undertake explanatory investigations before the necessary preceding groundwork has been accomplished. Perhaps the catastrophic nature of the disease and its profound impact on patients and families create a sense of urgency to discover the causes of phenomena (e.g., psychosocial adaptation to cancer, service utilization, unmet needs) so that these factors may be favorably influenced. Or it may be accounted for by the generally lower value accorded to descriptive studies. There must be, ho\l;ever, a greater willingness to undertake the foundational descri~tiveand correlational studies that establish the Darameters of a phenomenon, permit the assessment of the utility of various measurements, and guide selection of variables for subsequent explanatory research. Similarly, there must be a greater willingness to carry out replication studies. In the absence of replication, too many interesting findings remain of questionable value because it is never established that they were not merely unique to the population under study or an artifact of some extraneous factor. Measurement problems abound in psychosocial oncology as in most fields of research. Perhaps the most significant relate to measuring patients' moods or affects, because these are frequently examined outcomes. Vegetative symptoms such as lethargy, sleep difficulties and weight loss, are almost always included in depression measures as indicators of depressive symptomatology. However, these symptoms may in reality reflect disease progression and treatment side-effects (Gottschalk, 1984). Some measures of anxiety present similar problems. These measurement problems can become pronounced when measuring change over time in patients' psychological status during disease progression (Mor & Guadagno-
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li, 1987). Until reliable and valid measures of affects are developed without items that may reflect somatic or organic changes, a completely satisfactory solution to such problems will not be achieved. Until then, a number of strategies for attempting to disentangle the somatic and psychological factors have becn suggcsted (Dcrogatis and Spencer, 1984; Mor and Guadagnoli, 1987; Endicott, 1984). Another problem is the use of different measures for thc same construct, such as "quality of life." While some measures of this construct are rather narrow in conception, others arc quitc broad. "Social support" is another example. Some studies employ instruments that tap only perceived support, others assess only obtaincd support, and still others assess both. Furthermore, some focus only on practical or tangible support, others only on emotional support, and still others on both. Studies adopting different mcasurcs of thc same concept in essencc measure different phenomena, or at least different domains of the same phenomena. This is undoubtcdly onc reason for inconsistent findings in a number of areas, especially in research concerning the quality of life of cancer patients. This problem of varying ~once~tu~aliza~ions and measurerncnts of kcy-concepts makes it difficult to meaningfully compare findings across studics. Without thc ability to make such comparisons, the discovery of patterns in the findings of various investigations is grcatly impeded. It would be extremely useful for a recommended set of "preferred" mcasurcs to be identified for frequently used variablks in psychosocial oncology research. While researchers must always rcserve the prerogative to choose the measures they regard as most appropriate to their purposes and populations, in the past their choices have frequently been based on prior familiarity with a measure or its easy accessibility. Many ncwcr rcscarchers to the field would undoubtcdly welcome the guidance of more senior investigators in selecting measures that retain their psychometric propcrtics among cancer paticnt populations, are acceptable to respondents, and do not impose excessive burden on patients and family members. At thc same time, however, psychosocial oncology researchers should avoid allowing the availability of established measures to dictate what variables will be examined. Based on their clinical
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experience, theory, or the literature, they should determine the crucial variables for understanding the phenomenon under study. If sound measures do not already exist they must begin the task of developing them. As Spinetta (1984) has pointed out, we must balance the tendency to focus on variables for which there are existing reliable and valid measures against the need to examine what is truly important. Another methodological problem is the tendency to aggregate cancer patients with diverse disease sites and stages forming heterogenous samples with different prognoses, and varying treatment regimens, side-effects and consequences. Study samples also often include patients who have lived with their disease for varying lengths of time, or have been off treatment for diverse intervals. This is often necessary to achieve an adequate sample size, especially when recruiting from a restricted patient population (e.g., from a single treatment setting). While the larger samples resulting from such heterogeneous inclusion may seem to enhance the power to discern meaningful relationships, in fact the underlying diversity may obscure meaningful relationships that would be observable in a more homogenous sample. Furthermore, rarely are there enough cases to permit meaningful subgroup analyses based on all relevant underlying factors (e.g., disease site, stage, treatment side-effects, time on treatment, time off treatment) or to control statistically for the confounding effects of this diversity. Respondent burden is another methodological concern that is particularly salient when dealing with cancer patients in active treatment who are likely to experience chronic fatigue as a consequence of the disease and treatment. Interview schedules or questionnaires should be kept as brief as possible to minimize the burden on the patient. Beyond the ethical concerns that dictate such an approach, respondent fatigue is likely to compromise the quality of the data obtained, especially toward the end of the interview or questionnaire. This means that researchers should avoid including multiple measures of the same attribute or measuring every potentially important variable in order that nothing important will be missed (Derogatis & Spencer, 1984). The responsibility exists to be selective and focused in the choice of measures. A careful review of the literature should help to identify variables most likely to be signifi-
cant. Small pilot studies or feasibility studies can also help to assess patients' difficulty or fatigue in completing the battery of measures.
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RECENT FINDINGS The advancement of psychosocial oncology has been hampered by the absence of agreed upon research priorities and a planned agenda of research to address central questions in the field. Consequently, while there has been a proliferation of published rcscarch in recent years, there are few issues about which a substantial body of empirical knowledge has developed. Even where this is the case, there has becn little tendency to build on previous findings. While researchers cite related previous findings as part of their literature rcvicw, they generally do not try to replicate them in other populations, refine or extend them, or systematically test a number of post-hoc interpretations that may have been offcrcd for the earlier results. The findings in many areas have often been contradictory, possibly owing to sample, conceptual, measurement and research design differences across studies. With these cautionary remarks in mind, a number of interesting recent findings and their implications for social work practice may be considered. Contact with Other Cancer Patients. First are those which concern the impact of contacts between fcllow cancer patients, both in self-help groups and one-to-one, on the problems they experience and on their cmotional well-being. Van den Dorne et al. (1986) reviewed the findings from six studies that examined the effects of patient contacts and employed a control group. Several studies with sound dcsigns revealed positive benefits from such interactions including: (aj more knowledge about breast cancer, greater use of a prosthesis, and better technique of breast self-examination (Stccchi, 1981); (b) greater reductions in negative affect (Spiegel et al., 1981); (c) fewer disturbances in body image (Farash, 1978); and (d) stronger improvement in perception of one's general health (Vachon et al., 1982). No evidence suggesting a negative effect associatcd with such contacts was reported in these invcstigations. [It should be noted that these studies were largely confined to breast cancer patients.] Van den Borne et al. (1987) studicd brcast cancer patients and lymphoma patients who had and had not had contact
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with ex-patients with the same illness. They found that regular contacts between fellow patients was associated with a decrease in negative affect (i.e., depression, anxiety and psychological complaints), enhanced self-esteem, and decreased feelings of uncertainty, especially among patients who did not receive adequate information from their physicians. Rogers et al. (1984) surveyed 652 women with breast cancer, and found that 90% of those who had seen a Reach to Recoveryvolunteer perceived the program as helpful. More than three-quarters said that, "just seeing someone who had recovered helped me feel that I could too." However, when the investigators examined whether participation in the program was associated with depressive symptomatology, fears of recurrence, concerns about disfigurement, or length of time required to return to normal activities, no significant differences were observed. These findings suggest the significant potential value of self-help and patient-to-patient volunteer programs for cancer patients. Such programs appear to benefit patients by: (a) destigmatizing and normalizing patients' conditions and problems; (b) making patient participants feel helpful to other patients; (c) suggesting coping strategies and modeling successful recovery; and (d) providing empathy and understanding through shared patient status (Christ et al., 1987).
While most mental health professionals are well aware of the rise of the self-help group movement in recent years, this valuable resource is still underutilized among cancer patients. Some professionals feel that the groups challenge their expertise and therefore resist their use. Others feel it undesirable for patients to have too much opportunity to compare their condition and adjustment with that of other patients, because they believe such comparisons may depress patients when they are doing worse than others or create guilt when they are doing better. There has also been a tendency for professionals to underestimate the meaningful benefits which patients derive from the opportunity to socialize with each other. Available evidence does not support such concerns, but rather suggests that self-help groups are used as a complement to professional assistance, not in place of it (Taylor et al., 1986). Given the lack of identifiable negative outcomes, available data suggests that
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social workers should facilitate the creation of self-help groups and patient-to-patient volunteer programs. The social worker is often the liaison between the hospital and patient volunteer groups, such as Reach to Recovery (mastectomy) and the Lost Chord or Ncw Voice Clubs (laryngectomy), and therefore is most readily suited to making the referral. The social worker can also educate physicians about the availability of this resource and its potential benefits. (In some places, the patient's physician must still provide writtcn permission before a volunteer is called.) The physician can be very influential in encouraging the patient to meet an ex-patient volunteer or participate in a self-help group. At Memorial Sloan-Kettering Cancer Centcr participation in a post-mastectomy support1 education group is prescntcd by the physician as a routine part of rehabilitative care. In an environment with few resources availablc for psychosocial programs, mutual support groups and patient volunteer programs offer a cost-effective strategy for assisting patients because of the limited professional involvement typically required. Since they are usually free or provided at low cost, these services are accessible to patients who could not afford more individualized or intensive professional intervention. Self-help modalities may also be rhe intervention of choice when the goal is to offer serviccs to all paticnts and not just those at high risk for maladaptation to their illness. The "resilient" paticnt may especially benefit from such assistance. In many mutual support groups a social worker may rcmain involved after the group is formed, but usually in a nondirective role. This is the case at Memorial Sloan-Kettering Cancer Center where the professional clarifies information and facilitates mutual support among participants (Christ et al., 1987). Social Support from Family and Friends. The influence of social support obtained from family and fricnds in the adjustment of cancer patients to thcir illness is a related issue that has received substantial research interest. That support, especially its emotional aspects, can mitigate the adverse psychological impact of the diagnosis and trcatmcnt, as has been demonstrated in a variety of studies and its benefits to patients are widely recognizcd (Wortman, 1984). What has becn less recognized is that research also docu-
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ments that certain kinds of putative support can be detrimental or distressing. For example, family members and friends often believe that it is supportive for them to appear unswervingly optimistic in their expectations about the patient's treatment and to distract him when he begins to express distressing or worrisome thoughts about his condition and outlook. Peters-Golden (1982) studied 100 breast cancer patients and 100 disease-free individuals. While the healthy individuals felt that it was important for cancer patients to remain as optimistic as possible, and two-thirds (66%) said they would "go out of their way" to cheer up a cancer patient, the patients found such attempts to gladden them as unhelpful. Another study found of pediatric cancer patients are often distressed by that the the attempts of others to be cheerful, optimistic and reassuring (Friedman et al., 1963). Similarly, Dunkel-Schetter (1981) found that cancer patients experienced as unhelpful attempts by family and friends to minimize the patients' problems and worries. Cancer patients are also vexed by attempts by others to distract them from talking about their disease because it is assumed such discussions are distressing to the patients. Peters-Golden (1982) found that cancer patients were upset and confused by the presumption that avoiding the subject of their illness would be better for them. Furthermore, there is evidence that the provision of support can undermine patients' autonomy and self-esteem. Many patients in the Peters-Golden (1982) study reported being made to feel incompetent by excessive attention and assistance from family and friends. They felt forced to accept unnecessary dependency on others. Findings from another study (Revenson et al., 1983) also suggest that in certain contexts, social support can threaten patients' autonomy and self-worth. Brickman et al. (1982) have also argued against an uncritical view of the benefits of social support. They contend that a "secondary victimization" of victims can occur when others make awkward or ineffectual efforts to help them. Clearly these findings imply that attempts at providing support by family members and friends of cancer patients will not always be experienced as beneficial or constructive by the patients, and may even distress them. While the provision of appropriate instrumental
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and expressive aid can be very useful in maintaining patients' physical and emotional well-being, paticnts also need to retain a sense of autonomy and compctcnce which some kinds of help can undermine. Social workers can counscl family members and friends on how to communicate with the cancer paticnt, stressing the need for open and realistic discussion about thc illness and its consequences. Thc workcr can also debunk myths and misconceptions concerning what kinds of interactions and communications (or noncommunications) are helpful to the patient. Family members and friends can be madc aware how their avoidance of certain topics rclated to thc patient's illness or attempts to distract the patient from thoughts of it may inadvertently cause him to feel abandoned and isolated. Thc worker should explain that verbalizing their anxieties, fears, and anger can help patients clarify their feelings and clicit advice for coping with their distress. The social worker can also offer advice on how to enable the patient to feel competent and autonomous. Patients greatly fear the debilitation and dependency that their illness and its trcatment may bring about. In addition, they may feel guilty about the burdens it places upon members of their social network. Family members and friends need guidance on how much to do for the paticnt. They must recognize that while they may feel it is best to rclicvc the patient of some role responsibilities because they believe he should not bc troubled by such mundane mattcrs, their actions may cause the patient to feel excluded or treated as if he wcrc not competent. Any illness, but especially cancer, can profoundly threaten self-esteem. It is generally not recognized that helping the patient to continue to feel as if he or she is a productive, indcpendcnt, and contributing family member is an extremely important form of cmotional support. Psychosocial Conseqwtlces of Cancer S~rnivorship.The psychosocial consequences of cancer survivorship is a final area in which a considcrablc body of research has accumulated, although available data are sometimes inconsistent. Generally, the research has failed to demonstrate an elevated prevalence of psychopathology among survivors. However, there is evidence that a general sense of vulnerability and mild anxiety or apprehension persists among a significant proportion of recovered cancer patients, which
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while not usually sufficient to impair daily functioning, can compromise a sustained sense of well being. In a study of 3 and 6 year survivors, Mages and Mendelsohn (1979) found that most reported little change in their level of dysphoric affect or nervousness, although chronic underlying feelings of uneasiness and vulnerability did emerge. Cella and Tross's (1986) study of male Hodgkin's disease survivors (6-140 months off treatment) revealed that the mean score of his patient group on a global index of psychiatric symptomatology was one stanhard deviation above that of the measure's principal normative nonpatient sample, but also nearly one standard deviation below that of a sample of 425 male psychiatric outpatients. Scores on the symptom index did tend to be higher among patients who had more recently completed treatment, although group differences were not statistically significant. Fobair et al. (1986) found that 18% of their survivors (1-21 years off treatment) had scores indicative of clinical levels of depression, a proportion comparable to that observed in general community samples. ~epressionscores were not correlated with time since treatment, but were significantly higher among survivors less than three years past treatment. Research demonstrates that fear of recurrence is virtually ubiquitous among recovered cancer patients, even years after treatment (Mages & Mendelsohn, 1979; Schmale et al., 1983; Shanfield, 1980; Koocher, 1984; Siegel & Christ, 1989). While there is some evidence that this concern diminishes over time as the individual remains disease-free, the consensus is that it never dissipates completely. Cancer survivors experience an enduring sense of wlnerability and of living a precarious existence. The latent anxiety can be quickly reactivated by such events as follow-up visits to the doctor, the appearance of new, unrelated symptoms, learning about sorneone experiencing a relapse, and hearing or reading about cancer in the mass media (Mages and Mendelsohn, 1979; Shanfield, 1980; Siegel & Christ, 1989). Koocher (1984) observed that anniversary reactions (e.g., emotional reactions at the time of the year when diagnosis was made or successful treatment ended) and developmental marker events (e.g., social events or achievements that un-
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derscore growth or advancement, such as graduations or marriages) may also rekindle feelings of uncertainty and anxiety about recurrence. Cancer patients frequently feel that their illness has left them "damaged" cvcn in the absence of visible mutilation. Shanfield (1980) found the survivors he studied experienced an enduring feeling of being damaged which they felt would be passed on to future generations. Such a subjective sense of impairment in recovered cancer patients often causes them to avoid intimate relationships and to fear rejection. Based on their study of survivors, Magcs and Mendelsohn (1979) concludcd that following cancer, intimate scxual relationships suffer even in emotionally well adjusted individuals. Thcy suggest that sexual activity makes the cancer survivor especially vulnerablc to poignant feelings of damage, defect, and loss. While the data on sex-related differences in adjustment to survivor is not consistent, the preponderance of evidence suggcst that women cope bctter with the illness and its treatment than men. In a study of survivors by Kennedy et al. (1976), males were obscrvcd to have higher mean stress reactivity scores than females. Mages and Mendelsohn (1979) found that, regardless of age, canccr seemed to have a more negative impact on men than women, the former being more likely to blame others for their difficulties and withdraw from social activities. Several kinds of psychosocial interventions arc suggested by the research findings on survivors. Facilitating open and constructive communication between the patient and hishealth carc providers is one important area for social work intervention. Physicians and other health-care professionals have tended in the past to be reluctant to inform patients about the thoughts, feelings and emotions likely to accompany the disease and its treatment. Some.have worried that discussing possiblc negative psychological reactions to their disease and treatment that may occur will cause paticnts to experience those emotions (Freidenbergs, 1981-82). Research shows this is unlikely, and furthcr, that patients appreciate anticipatory information and praise physicians for providing it to them. Most want information about their illncss and treatment, whether it
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be good or bad (McIntosh, 1974; Cassileth et al., 1980). In fact, they often express great anger about not having been prepared for the long term consequences of treatment. Information seems to allay anxieties and diminish the fear associated with uncertainty (Bond Johnson et al., 1984). Helping survivors anticipate feelings they may experience about their recovery, as well as certain reactions they may elicit from others, will enhance their sense of control over their lives and reduce their anxieties (Cassileth et al., 1980). Preparation and "normalization" of their experiences can prevent patients from perceiving themselves as coping poorly. Instead they will view their problems as common ones that can and need to be managed. Because many of the re-entry problems survivors will experience are predictable, their educational needs can be anticipated, making planned educational interventions possible (Mullan, 1984). Social workers can facilitate patient-to-patient contact among survivors. A veteran patient's experience provides a realistic view of treatment consequences and rehabilitation. The research on the benefits of fellow patient contact has already been discussed, and this seems a useful intervention modality among survivors as well. The data suggest that special efforts may be needed to reach out to male cancer survivors. Explanations proposed for why women may cope with survivorship better than men include that: women more readily seek out and use social support (Chapman et al., 1979); women are more accustomed to and therefore more accepting of bodily change (Mages and Mendelsohn, 1979); because selfreliance is a societal expectation for men, they experience greater distress over the dependency engendered by the illness (Mages and Mendelsohn, 1979). Whatever the reason, social workers should make special efforts to offer assistance to this often underserved population. FUTURE RESEARCH
Psychosocial research has frequently centered on investigating whether cancer patients experience a more compromised quality of life in various domains than other patient groups or healthy "nor-
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mals." A more relevant rcscarch focus might be the identification of barriers to maximal functioning during treatment and the most complete rehabilitation possible afterward. Whether cancer patients experience more or fcwer problems than other paticnts is probably less important than whether treatment and illness rclated problems can be prevented or mitigated with reasonably cost-effective interventions. Given the growing number of paticnts surviving for extended periods of time, relatively little rcsearch has directly addressed their long-term rehabilitation needs. While considerable rescarch has been carried out on thc impact of cancer and its treatment on patients' own quality of life, investigations of the family impact of the disease has been largely restricted to families of pediatric cancer patients; relatively little research has been carried out on the consequences of the illness for the members of the families of adult patients, especially young children. It is crnotionally threatening for children to witness the changes cancer and its treatment may bring about in their parents' appearance, mood and functioning. Their typical patterns of social interaction with peers may also be disrupted or considerably restricted by thc added responsibilities thc illness places on them, especially on adolescents who may be called upon to care for younger siblings. An issue that should be investigated is what are the sources of social support available to children when a parent is ill with cancer. To what extent do siblings, peers, teachers and non-related adults provide emotional and practical assistance to young children and adolescents? Another important area for future investigation concerns patterns of communication within families in which one member has canccr. Difficulties in communicating with those close to them about their illness have been among the most frcquently reported and troubling problems raised by cancer patients. The patterns of noncommunication or distorted communication in families can undermine thc very social relationships and support recognized as so important in cnabling the paticnt to cope. Open communication is integral to the provision of expressive support (Wortman & Dunkel-Schetter, 1979). Yet relatively little is understood about the patterns of family
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communication following diagnosis. What expectations emerge concerning which issues, topics or feelings will or will not be openly discussed? How are these prescriptions and prohibitions enforced? What beliefs do family members hold concerning what is helpful and not helpful to discuss openly with the patient? How do the patterns of communication change over the course of the illness? How do these patterns of communication interfere with the provision of mutual family support? If we could understand more about these issues we could begin to formulate interventions to promote better family communication. Caregiver burden is another issue that has not received adequate attention from psychosocial oncology investigators. It is already well known that the patient's illness imposes considerable demands upon hisher caregivers. In addition to the obvious financial burdens, there are the physical burdens of the actual caretaking, the social burdens of restrictions placed on social interaction and leisure activities, and the emotional burdens of watching the patient both endure the pain of the disease and aversive medical procedures and suffer disfigurement and debilitation. In recent years there has been much research on the benefits from social support to individuals confronting a stressful life event, but the consequences of being the provider of support have been much less studied (Wortman, 1984). As survival for cancer patients is extended, treatment is increasingly administered on an outpatient basis, and hospital stays are shortened; informal caregivers (usually the spouse, adult children or friends) are being called upon to provide more practical and emotional assistance over longer periods. What are the short and long term consequences for the spouse and other family members of being the primary care provider? What kinds of extrafamilial support do the spouse and other family members mobilize to help them cope with these burdens? What factors influence whether the spouse or other family members seek out support from outside the family for themselves? What determines a family's preference for formal versus informal sources of support? What kinds of support are most beneficial to them? And can support be detrimental, as when it undermines autonomy and fosters unnecessary dependency?
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A better understanding of the dimcnsions of caregivcr burden and how they can be mitigated would be extremely valuable. While the increasing availability of resources to assist families in coping with the burdens is gratifying, we also have to learn more about the barricrs to families accepting or making more extensive use of many of these services. Finally, our prevention work with families could profit from greater understanding of the unique problems arising in certain vulncrable family situations. Examples might be: the single parent family in which one member has cancer; foreign families with cultural beliefs, values and practices that make it difficult for thcm to accommodate to normal cancer carc practices followed in this country; and multigenerational cancer families. Each of these types of families confronts particular difficulties in coping with the impact of the illness on the family unit. Currently, we know very little about what special strategies for adapting to the stresses of the illness these vulnerable family units develop. What happens in divorccd families when one of its members becomes ill with cancer? How docs the fractured family unit respond to the crisis? The extraordinary sources of stress that can arise for a single parent with cancer or who has a child with cancer are obvious to everyone. The special anxieties and vulnerabilities evoked in children of divorce when one's custodial parent becomes ill with cancer are also self-cvident. Foreign families confront multiple problems as well. Languagc differcnces present barriers to obtaining support from medical staff or through participation in support groups. Differing customs, values or bcliefs regarding illness, its etiology and treatmcnt may make it difficult for these families to accommodate to the organization of medical care for cancer in our country or to scck out and obtain various kinds of assistance. If thc family has traveled from another country to receive treatment in the United States, their social ties have at least tcmporarily been disrupted which can deprive them of important sources of practical and emotional assistance. Multigenerational cancer families are vulnerable because their responses to the illness and expectations concerning its progression and treatmcnt may be patterned after those of grandparents, parents,
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aunts, uncles or other relatives either with the disease or acting as care providers. Certain shared beliefs about the meaning of the cancer in these families may be self-defeating in their efforts to cope with the disease. Dynamics relating to blaming other family members for one's disease, or guilt for having passed on a vulnerability to cancer are not uncommon.
CONCLUSION Psychosocial oncology research is a rapidly growing field of inquiry which has the potential to enhance our understanding of how to promote preventive health behaviors, foster compliance with treatment, and facilitate patients and family members' adjustment to the long and short term consequences of the treatment, recovery and survivorship. As a relatively new field it is still inventing and defining itself. To date there is no unifying theoretical perspective or dominant research paradigm to guide investigators, nor are there widely agreed on priorities for research. If the growing body of empirical research being conducted is to eventually amount to more than a collection of isolated studies, these issues must be addressed in the near future. While the challenges facing psychosocial oncology researchers are great, so are the rewards. The issues addressed are important, the methodological and conceptual problems are stimulating, and the opportunities to employ the insights gained to enhance the quality of life of individuals under exceptional stress are abundant. REFERENCES Bandura, A. Self-efficacy: Toward a unifying theory of behavioral change. Psychological Review, 1977,84, 191-215. Bond Johnson, J.L. & Blumberg, B. A commentary on cancer patient education. Health Education Quarterly, 1984, 10, 7-18. Brickman, P., Rabinowitz, V.C., Karuza, J., Coates, D., Cohen, E. & Kidder, L. Models of helping and coping. American Psychologist, 1982.37,368-384. Cassileth. B.R.. Zuokis. R.V.. Sutton-Smith. K. & March. V. Information and partickation'preiere&s among cancer paiients. Annals $lnfemal Medicine, 1980, 92, 832-836.
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Cella, D.F. & Tross, S. Psychological adjustment to survival lrom Hodgkin's disease. Journal of C o n s u l h ~ gond Clinical Psycholoa, 1986,54, 616-622. Chapman, R.M., Sutcliffe, S.B., & Malpas, J.S. Cytoxic-induced ovarian failure in Hodgkin's Disease 11: Effects on sexual funclion. Journal of the American Medical Associoiion, 1979, 242, 1882-1884. Christ, G., Bowlcs, M.E. & Bauman, L.J. Educalional and support groups for breast cancer patients and their families. In J.R. Harris, I.C. Henderson, S. Hellman & D.W. Kinne (eds.) Breasi Diseases. Philadelphia: Lippincon Co., 1987, pp. 648-656. Cohcn S. & Syme, L. Issues in the study and application of social support. In S. Cohen and L. Syme (eds.) Social Suppot? otrd Henlrlr. Orlando: Academic Press, 1985. Colarusso, C.A. & Nemiroff, R.A. Adult Development: A New Dinremion in Psychodynamic Theory ond Pracrice. New York: Plenum Press, 1981. Derogatis, L.R. and Spencer, P.M. Psychometric issues in the psychological assessment of the cancer patient. Cancer, 1984, 53(10 Supp.), 2228-2232. Dunkel-Schetter, C. Social Supporr and Coping wiih Cancer, Unpublished doctoral dissertation, Northwestern Universitv, 1981. Endicott, J. ~easu;ement of depression in &cnts with cancer. Cancer, 1984, 53(10 Supp.). 2243-2247. Erikson, E. & I d h o o d and Socieiy. New York: W.W. Norton, 1963. Farash, J.L. Effect of counseling on resolution of loss and body image disturbance following a masteclomy. Dissetintiort Abstrocis Iniemaiional, 1978, 38(8B), 4027.
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