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Cancer and the partner relationship: What is its meaning?
Cancer and the Partner Relationship: What is its M e a n i n g ? Barbara B. Germino, Betsy L. Fife, and Sandra G. Funk
When cancer occurs, it is an illness that has meaning for the lives of all members of the family. This article focuses on the meaning and significance of the illness for the partner relationship, both the individuals within the relationship and the dyad. Results of two studies are presented: one study is based on in-depth interviews with 50 individuals who were newly diagnosed with cancer and their partners, and the other study used questionnaires from 412 patients and 175 partners to obtain statistical data. Findings pointed to the importance of meaning in the adjustment of individuals, as well as the dyad. Interview data indicated that patients and their partners searched for meaning in the illness that would decrease its threat, and statistical analyses showed the significance of meaning as it applies to specific aspects of adjustment. The importance of considering meaning in care that is directed toward the prevention of problems within the dyad, which can occur as a result of coping with the stress of cancer are emphasized, and some specific recommendations are made.
Copyright © 1995 by W.B. Saunders Company
T HAS FREQUENTLY been noted that cancer is a family illness; therefore, everyone who is a part of the family must struggle to integrate the cancer experience and its meaning within their lives. The meaning of cancer to the family as a unit, and to individual members, is an important factor in the adjustment process. 1-4 The family's adjustment to cancer involves, among other things, coping with a myriad of changes, including changes in the perception of their life and their world. Family members must somehow integrate the changes brought on by the illness, and in so doing comprehend the meaning for themselves as individuals and for the family as a whole. This may include challenging long held assumptions; changing the way they view themselves, their life, and their relationships; reexamining values; and addressing fears and concerns. 3'5'6 From a theoretical systems perspective, the adult partners are the executive unit of the family; that is, their responses to a crisis provide the foundation for the responses of the family system as well as its individual members. 7 The meaning of a cancer diagnosis within the partner relationship is likely to be influenced not only by each individual partner's view of that meaning, but also by the convergence and diversity of meaning within the dyad and the dynamics within the family. Partners' perspectives of the meaning of the illness may be changed by sharing that meaning within the family and with others outside the family who see the experience in divergent ways. This article has two primary purposes. First, though little research exists in this area, relevant work on the meaning of illness for spouses or part-
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Seminars in Oncology Nursing, Vol 11, No 1 (February), 1995: pp 43-50
ners, as well as for the dyad, is reviewed. Secondly, the results of two studies are presented,one qualitative and the other based on statistical data, to describe and explain the importance of the meaning of cancer within the partner relationship. The results of this work support the following premises: first, meaning within the dyad is both shared and divergent, and partners' perceptions may affect one another; second, meaning may influence both individual and dyadic adjustment. The Concept of Meaning For purposes of this article, the meaning of the illness is defined as the nature of each individual's
From the Department of Adult and Geriatric Health, School of Nursing, University of North Carolina at Chapel Hill; Center ¢~)r Nursing Research, Indiana University School of Nursing, and School of Nursing, Universi~ of North Carolina at Chapel Hill. Barbara B. Germino, PbD, RN, FAAN: Associate Professor and Chair, Department of Adult and Geriatric Health, School of Nursing, University of North Carolina at Chapel Hill; Betsy L. Fife, PhD, RN: Research Scientist, Center for Nursing Research, Indiana University School of Nursing; and Sandra G. Funk, PhD, RN: Professor, and Associate Dean for Research, School of Nursing, University of North Carolina at Chapel Hill. Supported by grants from the American Nurses' Foundation and the National Center for Nursing Research of NIH, 1RO1BRO1331-O1A1. The statistical study was supported by the Wahher Cancer Institute and Community Hospitals of Indianapolis. Address reprint request to Barbara B. Germino, PhD, RN, FAAN, CB #7460, Carrington Hall School of Nursing, University of North Carolina, Chapel Hill, NC 27599. Copyright © 1995 by W.B. Saunders Company 0749-2081/95/1101-000855.00/0 43
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GERMINO, FIFE, AND FUNK
and the dyad's perceptions of their relationship and their world, as it is shaped by the occurrence of cancer. Meaning includes peoples' perceptions of the potential significance of the illness for the future: it is on a continuum from positive to negative, and it changes over time. There are two fundamental dimensions of the construct as it is defined here, self-meaning and contextual meaning. Selfmeaning is related to the perceived effects of the cancer experience on various aspects of the individual partner's and the dyad's identities, whereas contextual meaning is related to the perceived characteristics of the cancer experience itself within the context of the social world. 8 Importantly, finding meaning is a part of the coping process, and found meaning is an outcome of that process. REVIEW OF THE LITERATURE
Although there is a small but growing literature on the meaning of cancer to those with the disease, 8q4 little has been written on the process of finding meaning or on the impact of found meaning for partners or for patient/partner dyads. Lewis 3 has begun to directly address this issue in an essay discussing the family's work in finding meaning as part of psychosocial transitions in cancer. From the studies of meaning that include patients' perspectives, which are imbedded in a larger literature that might be labelled as research on the impact of cancer on patients, spouses/ partners, and families, some beginning insights may be inferred.
Finding Meaning: Relevance of Patient Themes to the Dyad or Family Preoccupation with consequences of the cancer diagnosis and thoughts about the future have been described as part of the development of meaning for newly diagnosed cancer patients. 12 In addition to thinking about themselves, patients reported wondering about the meaning of the illness for their families, including if their families would be burdened, how family members would manage if they died, and whether their cancer meant an increased likelihood that others in the family would suffer a similar illness. Being useful to others rather than a burden was important to these individuals, and it is a particularly significant factor within American culture.15' ~6 For persons with cancer, the process of finding meaning may involve a life review that commonly
includes reflecting on close relationships. This was exemplified in the descriptions of one group of patients that included an increased awareness of the positive aspects of some relationships, their enduring quality and the elements of companionship and mutual caring, a2 The importance of communication in this process of finding meaning has been linked to adjustment both clinically and, to some extent, empirically. Close family members have been helpful in this process by allowing patients to verbalize their personal concerns, to discuss their illness and its consequences, and to process these issues interpersonally. 17-20
Finding Meaning: Impact of Cancer on Spouses~Partners The majority of research describing the impact of cancer on partners focuses on the experiences of women coping with breast cancer and therefore on male partners. There is also a small body of literature concerning problems related to sexuality for couples coping with testicular and gynecological cancers. No published studies of same-sex partners have been reported at this time. Partners of women with breast cancer have been described as distressed even 1 year to 18 months after the diagnosis; the magnitude of that stress was similar to a stressed but normally functioning population rather than to a psychiatrically ill population.2a Indicators of stress included increased anxiety and depression and feelings of inadequacy when trying to be of help and support to their partners. Furthermore, partners reported there seemed to be little support available for them, as well as feelings that they were less supported than persons with cancer. 2~-23 The source of this distress may lie in the meaning their partner's cancer holds for them. For example, descriptive research about the meaning of the illness for family members at various points in the cancer trajectory included equating cancer with death, fear about whether the patient would suffer or die in the future, and uncertainty about the prognosis and the possibility of recurrence. 24-28 Similarly, during the initial impact following a diagnosis of lung cancer, the more extreme stress reactions in spouses have been interpreted as possibly being linked to their contemplation of the potential loss of their marriage partner. 29 It is significant that husbands of women with breast cancer frequently did not discuss their feelings of distress with either their wives or with professional care-
CANCER AND THE PARTNER RELATIONSHIP
givers. 3° They tended to be most distressed during periods of active treatment, during times when their partners made an increased number of demands perceived to be related to their illness, and during periods of recurrence. 1,26,31 Feelings of isolation experienced by partners may also be a result of a meaning of cancer held by the general population, that the distress of the illness is suffered primarily by the person with the disease.
Finding Meaning: Impact of Cancer on the Marital Dyad Although there has been speculation about the impact of breast cancer in particular on marriage relationships, research indicates that marriages that are strong before the onset of cancer generally remain strong despite reported periodic distress and communication difficulties. Breast cancer has been found to impose some strain on sexual relationships in these marriages, which is often related to patients' concerns about body image and partners' fears that sex could be harmful to the patient. Although partner acceptance of changes in body image was reported to be high, that did not alter women's anxiety about this issue or the perception that there were sexual problems. 2~ Another issue for couples coping with breast cancer was the common lack of discussion and communication of emotions either before or after mastectomy. 32 Timing was important, with patients and partners differing at specific times in how open they were to discussing their fears. Postmastectomy women had a greater need to talk about concerns than their partners. For male partners, having a positive outlook and avoiding negative views was perceived as being important to their own and their partner's adjustment; therefore, discussing negative thoughts, such as the fear of recurrence, was seen to be potentially damaging. One explanation of this orientation is that for those men, the meaning of cancer was both a threat and a challenge to be met with the defense of positive thinking. This view of how to best cope with cancer is not uncommon in the messages patients and families get from health care providers, cancer fighting organizations, and personal accounts of battles with cancer found in books and the media. However, their partners' reluctance to listen and talk about their concerns was frustrating to women who clearly needed to do this to comprehend the meaning of their experiences. 32 Likewise, in a
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study of family relationships in lung cancer, spouses, particularly male spouses, reported suppressing their feelings to a greater extent than patients. 29 The relationship of open communication to meaning and adjustment is a recurring issue in the literature, but empirical findings are certainly not definitive. Northouse et a121 hypothesized that the degree to which openness in communication facilitates a couple's adjustment to breast cancer may depend on precancer communication patterns, as well as on each partner's preference for information and disclosure. Open communication may be most beneficial when both partners have similar needs for sharing, but timing and the meaning the illness holds for each of them may be important intervening variables. Couples who have difficulty with communication regarding the painful issues related to the illness can often benefit from professional intervention. Other factors that are a part of the impact of cancer on the relationship of the dyad, and which may be important in the meaning of the illness, include major lifestyle disruptions and role changes, 21'22'32 flexibility in how roles are defined, and family developmental level. 34 In addition, the stage of the illness and the prognosis contribute to derived meaning as indicated by the change in meaning across the illness trajectory. Families have been reported to experience significantly greater distress with advancing or terminal disease, because advanced cancer often increases care giving demands. 28 Along with commonly experienced losses of functioning and increased symptoms, terminal illness confronts the family with the reality and the meaning of approaching death, as well as with the need to come to terms with their approaching loss.
Divergence and Convergence of Meaning Within the Dyad As mentioned above, patients and their partners do not always find shared meaning in their cancer experiences. Each may encounter conflict between their own fears and their need to share them and the wish to protect, reassure, and comfort the other. 2v In the process, the meanings of cancer for them may not be communicated to their partner, particularly if they involve negative feelings, resentment toward the intrusiveness of the illness, or what they perceive to be selfish concerns, such as
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GERMINO, FIFE, AND FUNK
those that are more concerned with their own well being than that of their ill partner. 27'36 Other divergence of meaning may stem from the partner being the caregiver for the patient. Caregivers of ill family members with advanced cancer have reported that standing by and observing the patient's illness is very difficult. 36 Throughout the cancer experience, family members struggle at times with being part of, yet outside of, the patient's experiences; moreover, uncertainty and the inability to alter or effectivelY manage some aspects of the illness may result in feelings of frustration and helplessness. 37,38 It has been postulated that the family's collection of perceptions shapes the meaning of the illness for that family. 39 That process is likely to be a complex one in which shared and diverse meanings are processed individually, with each other, and with confidantes outside the family. The meanings that are shared revolve around the cancer as a threat, the patient's symptoms, well being, the future, and the implications of cancer for the family's functioning and relationships. 4'35 However, what may be most significant in promoting quality of life may not be a convergence of meaning within the dyad and the family, but an openness to sharing the meaning held by each individual so that relationships can be deepened and strengthened. QUALITATIVE STUDY
Findings of the larger study of family members' concerns that result from a diagnosis of cancer, from which the data for this article were drawn, are reported elsewhere. 24 Families of 50 persons diagnosed as having breast, lung, and colorectal cancer within a period of 6 months were recruited from a number of medical center clinics and interviewed in their homes using a semistructured interview format, beginning with open-ended questions about the person's experiences and concerns since the diagnosis. Each family member was interviewed privately, and interviews were conducted simultaneously by teams of three interviewers. All interviews were tape recorded and transcribed. Although adult children were included in this study, the findings reported here are based on the responses of patients and their partners. A description of the meaning of the illness held by partners, a comparison of the meaning held by partners and patients, and their communication regarding the meaning of the illness is presented.
The meaning of the cancer experience to these individuals was best exemplified by questions like, "Why has this happened?" Partners asked the question in regard to themselves and less often in regard to the patient and their relationship, "Why has this happened to us?" Another primary issue concerned what life is about, and more personally, what the individual's and the couple's life has been about. The spouse of a man with lung cancer, in contemplation of her husband's poor prognosis and the possibility of his death asked, "Did we smell enough roses?" Others re-evaluated their priorities often questioning what had been. After his wife's diagnosis of breast cancer, a man described by his wife as a workaholic noted, " I don't know how important work is in the overall scheme of things." The wife of a seriously ill man reported that she was in a total state of shock as a result of the diagnosis and that she had been rethinking her life; she concluded, "Your children and your accomplishments-those are the things to get out of life." The essence of cancer's meaning for these people at this early point in the illness trajectory was uncertain about the patient's future. Many of the patients in these families were still undergoing treatment, their prognoses were as yet unclear, and their trajectories were uncertain. Issues of concern about the future included the possible spread of cancer and its recurrence, as well as the possibilities of future pain and suffering. The partner of a woman with breast cancer expressed it vividly when he said, "We don't know the beast at the end." Clearly, the diagnosis of cancer, regardless of the expected prognosis, precipitated fears of death and the anxiety of being constantly confronted with its threat. Wondering if the illness would end in death, many individuals expressed fears of losing their partner now or in the future. There were painful questions like, "How much time do I have with him?" and "Will she survive this?" or "Will she die?" One husband described these thoughts as "Just so much anguish." In addition to the possibility of death, partners were also confronted with how they would cope with the loss. Statements like, "Losing her would be a blow to me," or " I don't think I could take it I couldn't live here if he were to die," or " I could scream about it," convey painful meanings of anticipated and feared loss. The meaning of cancer for these partners was
CANCER AND THE PARTNER RELATIONSHIP
the possibility of a changed future, a future without the patient, a future of uncertainty about achieving goals and dreams, a future in which life may need to be managed differently. Some partners feared being alone, whereas others wondered what it would be like and whether they would be able to cope. A number of partners concluded that in managing the future they would have to "take life one day at a time," or that "life is gonna keep on g o i n g . " Some couples decided to carry out planned trips, and others vowed to "try to enjoy life more in the time we have together." For a number of subjects, issues pertaining to relationships and intimacy were precipitated by the cancer experience. Changes in relationships that had occurred or anxiety about relationships that might change were a common theme, as were communication difficulties and changes in communication patterns. The meanings expressed around this theme were striking. One husband said about communication with his wife, " I won't tell her about my feelings-it would contribute nothing," whereas a wife noted that she "Didn't want to say the wrong thing to hurt his (her husband's) feelings." The college professor husband of a physician with advanced breast cancer described his ambivalence about discussing her illness saying, " I t activates grief." For many partners, the cancer experience was characterized by the struggle to manage the patient's illness and its effects on balancing the demands of daily living within a family. In this context, partners worried about the patient's ability to continue to work in spite of the effects of the cancer and its treatment. They also worried about losing time at work themselves because of the illness demands and balancing illness demands with the demands of their daily lives. At issue for partners with heavy demands in both areas was getting adequate rest and staying healthy so they could continue to care for the patient. Concern about a lack of energy if the illness were to persist with a high level of demand and thoughts of others who might help were also common among partners. What cancer means in terms of balancing dayto-day living with illness demands was the most common issue for both patients and partners, and the specific process of defining the meaning of the illness for themselves, their relationship, and their family was the least common. Beyond these clearly shared meanings patients and partners di-
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verged in several ways. In all areas of concern, patients focused primarily on themselves, whereas partners focused equally on their concerns about the patient and themselves. The second most common issue for partners was intimacy and relationships, whereas for patients it was the future in general and the trajectory of their illness. When subjects were asked if they had expressed their concerns to anyone within or outside of the family, both patients and partners were more likely to have discussed them with each other than with anyone else and least likely to have discussed them with an outside confidante or extended family member. However, it is particularly significant that there were many aspects of the meaning the illness held for them which they indicated they had not discussed with anyone at all. QUANTITATIVE STUDY
The findings presented below are part of a larger study of the adaptation of patients and partners to the stress of cancer at four specific points in the illness trajectory: the periods of (1) diagnosis, (2) first remission, (3) first recurrence, and (4) metastatic disease; however, the data are not differentiated according to these criteria in the results discussed here. The sample includes 412 patients representing various forms of cancer and 175 partners; the data are not paired. Meaning was measured using the constructed meaning scale. 4° It is a self-report measure that includes eight statements that refer to the impact of the illness on individuals' identities, their relationships with others, and their perceptions of the future. Cronbach's alpha of .81 was calculated, and other indicators of the reliability and validity of the scale are discussed elsewhere. 4° The measure uses a four-point, Likert-type scale with responses that range from strongly agree to strongly disagree. Scoring is on a continuum from positive to negative, with the highest possible score indicating the most positive perspective of the illness. Examples of the items include: " I feel cancer is something I will never recover from," and " I feel that I am the same person as I was before my illness." The items in the questionnaire for partners included the same content, but they were worded to be applicable to this group. Other variables discussed here in terms of their relationship to meaning include: emotional re-
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sponse, specifically anxiety and depression; personal control; general adjustment, as well as adjustment relative to family relationships and sexuality; and communication and satisfaction within the partner relationship. Emotional response was measured by the Bi-Polar Profile of Mood States, at the adjustment variables by the Psychological Adjustment to Illness Scale, 42 personal control by the Mastery Scale, 43 and the partner relationship variables, such as communication and marital satisfaction, by the Dyadic Adjustment Scale. 44 All of these measures have established reliability and validity that are discussed in the references given above. Initially, a t-test to evaluate the difference of means between patients and partners was carried out for each variable included in this study. It is significant that there was no difference between patients and partners with respect to the variable of meaning, with the mean score for both groups being 22. The highest possible score on this scale, which indicates the most positive meaning, is 32, and the lowest possible score, indicating the most negative meaning, is 8. The only variables in which there were significant differences for patients and partners were anxiety, depression, and family adjustment (P < .05). Partners experienced greater anxiety and depression, whereas patients had greater difficulty adjusting in terms of family relationships. Second, correlations were computed to study the relationship of meaning to individuals' emotional status, their sense of personal control, psychological adjustment, and the quality of the patient/ partner relationship. These coefficients are given in Table 1. As indicated, the Pearson correlations between meaning and most of these variables were statistically significant for both patients and partners. However, the magnitude of the coefficients for some variables differed between these two groups. The relationship between meaning and emotional response, meaning and personal control, and meaning and family adjustment was greater for patients. Specifically, the more positive the meaning, the more positive the emotional response or the lower the levels of anxiety and depression, the greater the sense of personal control, and the more positive the adjustment. However, the relationship between meaning and communication and meaning and sexual adjustment was greater for partners, that is, the more positive the meaning the better the communication and sexual adjustment within the
GERMINO, FIFE, AND FUNK
relationship from the partners' perspectives. Interestingly, meaning was not correlated with the two communication variables for the patient group. DISCUSSION
Both of the studies presented in this article support the premises set forth in the introduction. First, qualitative results indicated both similarities and differences in the specific meaning the illness held for patients and partners, whereas statistical findings indicated patients do not view the illness from a more negative perspective than do partners, or vice versa. Furthermore, based on the scores obtained using the constructed meaning scale, both groups held a fairly positive perspective. Interview data point to the similarity between patients and partners with respect to anxiety about the future in that this was a predominant source of distress precipitated by the diagnosis of cancer. Both groups reflected on the past and ways they could make the most of the present and the future. However, although these groups shared apprehension about the threat to the general well being of each family member, the dyad, and the family unit, there were important differences in the specific anxieties related to this issue for patients and partners. Patients expressed fears of pain and death, and great concern about how the family would manage without them. On the other hand, partners anticipated the significance of their loss and the possibility of confronting a future characterized by change and uncertainty. Partners also expressed anxiety concerning the need to balance Table 1. Correlation of Meaning with Emotional Status, Personal Control, Relationship Variables, and Psychological Adjustment for Patients and Partners Variables Anxietyt Depressiont Personal control Talk together Confide in each other Satisfaction with partner relationship Domestic adjustment¢ Sexual adjustmentt General psychological adjustmentt
Patients
Partners
.41 * .51" .52" .10 .10
.28" .33* .44" .18" .23*
.26* -.46* -.38*
.27* -.35* -.53*
- .59*
- .56*
* P < .05 (two-tailed) 1 These variables are coded with a high score indicating a positive emotional response. $ These variables are coded with a low score indicating a positive adjustment.
CANCER AND THE PARTNER RELATIONSHIP
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the demands of work and daily living with the role of caretaker. For some, the fear was as fundamental as finding the energy to cope with these increased demands. To reiterate it is notable that the data indicated in a t-test difference of means that partners experienced greater anxiety and depression than patients (P < .05). During interviews, both patients and partners indicated that they were more likely to communicate these important aspects of the meaning of the illness to each other than to anyone else, yet because of feelings of pain and grief aroused by these kinds of discussions, many of them had chosen not to talk about their fears and anxieties with anyone at all. The data indicated communication within the dyad was significantly associated with the development of meaning for partners but not for patients. However, communication was significantly correlated with lower levels of anxiety and depression, a greater sense of personal control, and more positive adjustment for both groups (P < .05, results not shown). Findings from both studies also supported the second premise set forth in the introduction that meaning is influential in the adjustment of both patients and partners, as well as in the dyad. Interview data pointed to the fact that both patients and partners searched to find meaning in the illness that would decrease its threat. This was supported by the statistical finding that indicated the meaning formulated by both groups tended to be more positive than negative. Furthermore, there was a significant relationship between meaning and particular aspects of adjustment as shown in Table 1. Specifically, meaning was significantly associated with domestic adjustment, sexual adjustment, and overall adjustment for both patients and partners, that is, the more positive the meaning constructed by the individual the more positive their general psychological adjustment, and their adjustment within the family and the dyad. Other correlations given in Table 1 indicate the important association between meaning and other variables that provide a more indirect measure of adjustment: specifically, emotional response, personal control, and satisfaction within the dyadic relationship.
CONCLUSIONS
Perhaps of greatest significance is the relevance of these findings to the care of people coping with the threat of cancer. There are several points to be made here. First is the importance of assessing the meaning the illness holds for individuals because it may provide some indication of their ability to adjust to the stress with which they are forced to live. When individuals view their illness from a highly negative perspective and the future with great anxiety and without hope, it is important to monitor this attitude for change with on-going assessments and to make referrals for psychosocial intervention when this seems warranted. As indicated by the data presented from these studies, it is crucially important to care for the partners of patients, as well as the patients themselves. This sometimes presents a challenge, because partners are frequently less accessible, and their needs may be less apparent; however, the family is a system, and the behavior and emotions of one individual in response to a crisis affect each family member and the family as a whole. 7 Finally, painful as it may be, findings point to the need for communication within the dyad if optimal adjustment is to be achieved. This can be encouraged during the process of providing health care. It is not necessarily important that individuals within the dyad maintain similar perspectives with respect to the illness, but it is important they are able to respect and understand their differences and support one another in their efforts to live both in the present and future in a way that provides the deepest sense of satisfaction for each of them. However, as discussed in the article in this issue by Cohen, "The Meaning of Cancer and Oncology Nursing," nurses must first become aware of the meaning cancer holds for themselves as caregivers before helping others cope with this central aspect of the cancer experience. ACKNOWLEDGEMENT
Betsy L. Fife gratefully acknowledgesthe support provided by the medicaland nursing staffsof Indiana UniversityMedical Center and CommunityHospitals of Indianapolis in obtaining data for this research. The financial support of the Walther Cancer Institute in conducting the research is appreciated.
REFERENCES
1. Lewis FM, Woods NF, Hough EE, et al: The family's functioning with chronic illness in the mother: The spouse's perspective. Soc Sci Med 29:1261-1269, 1989
2. LewisFM, HammondMA: Psychosocialrehabilitation of the familyto breast cancer: A longitudinal analysis. J Am Med Worn Assoc 47:194-200, 1992
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3. Lewis FM: Psychosocial transitions and the family's work in adjusting to cancer. Semin Oncol Nurs 9:127-129, 1992 4. Lewis FM, Hammond MA, Woods NF: The family's functioning with newly diagnosed breast cancer in the mother: The development of an explanatory model. J Behav Med 16:351-359, 1993 5. Feldman DJ: Chronic disabling illness: A holistic view. J Chronic Dis 27:287-291, 1974 6. Stetz KM, Lewis FM, Primomo J: Family coping strategies and chronic illness in the mother. Fam Rel 35:515522,1986 7. Minuchin S: Families and family therapy. Cambridge, MA, Harvard University Press, 1974 8. Fife BL: The conceptualization of meaning in illness. Soc Sci Med 38:309-316, 1994 9. Barkwell DP: Ascribed meaning: A critical factor in coping and pain attenuation in patients with cancer related pain. J Palliat Care 7:5-14, 1991 10. Coward DD: Self-transcendence and emotional wellbeing in women with advanced breast cancer. Oncol Nurs Forum 18:857-863, 1991 11. Lewis FM: Attributions of control, experienced meaning and psychosocial well-being in patients with advanced cancer. J Psychosoc Oncol 7:105-119, 1989 12. O'Connor AP, Wicker CA, Germino BB: Understanding the cancer patient's search for meaning. Cancer Nurs 13: 167-175, 1990 13. Steeves R: Patients who have undergone bone marrow transplantion: Their quest in meaning. Oncol Nurs Forum 19: 899-905, 1992 14. Taylor SE, Litchman RR, Wood JV: Illness-related and treatment-related factors in psychological adjustment to breast cancer. Cancer 55:2506-2513, 1985 15. Koestenbaum P: Is there An Answer To Death? Englewood Cliffs, NJ, Prentice-Hall, 1976 16. Baird RM: Meaning in life: Discovered or created? J Rel Hlth 24:117-124, 1985 17. Gotcher JM: Intrapersonal communication and psychosocial adjustment. J Psychosoc Oncol 10(3):21-39, 1992 18. Jackson DD: Classic reprints: Family homeostasis and the physician. Fam Sys Med 2:80-86, 1986 19. Jones RB: Life-threatening illness in families, in Garfield CA (ed): Stress and Survival: The Emotional Realities Of Life-Threatening Illness. St. Louis, MO., Mosby, 1979 20. Siegel B: Love, Medicine and Miracles. New York, NY, Harper & Row, 1988 21. Northouse LL, Cracchiolo-Caraway A, Appel CP: Psychologic consequences of breast cancer on partner and family. Semin Oncol Nurs 7:216-223, 1991 22. Northouse LL: Social support in patients' and husbands' adjustment to breast cancer. Nurs Res 37:91-95,1988 23. Oberst M, James R: Going home: Patient and spouse adjustment following cancer surgery. Top Clin Nuts 7:4657,1985 24. Germino B, Funk SG, Burman SL, May AD: Cancer as
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a family experience: Concerns of family members in the first six months. (in press) 25. Lewis FM: The impact of cancer on the family: A critical analysis of the research literature. Pat Ed Couns 8:269-289, 1986 26. Northouse LL: A longitudinal study of the adjustment of patients and husbands to breast cancer. Oncol Nurs Forum 16: 511-516, 1989 27. Sales E: Psychosocial impact of the phase of cancer on the family: An updated review. J Psychosoc Oncol 9(4):1-19, 1991 28. Sales E, Schulz R, Siegel D: Predictors of strain in families of cancer patients: A review of the literature. J Psyehosoc Oneol 10(2):1-25, 1992 29. Cooper ET: A pilot study on the effects of the diagnosis of lung cancer on family relationships. Cancer Nurs 7:301-308, 1984 30. Maguire P: The repercussions of mastectomy on the family. Intl J Faro Psychi 1:485-503, 1981 31. Baider L, Kaplan De-Nour A: Couples' reactions and adjustment to mastectomy: A preliminary report. Intl J of Psychiatry Med 14:265-276, 1984 32. Litchman R: Close relationships after breast cancer. Unpublished doctoral dissertation. Uuiv: of California, Los Angeles, CA, 1982 33. Gotay CC: The experience of cancer during early and advanced stages: The views of patients and their mates. Soc Sci Med 18:605-613, 1984 34. Vess JD, Moreland Jr, Schwebel AI et al: Psychosocial needs of cancer patients: Learning from patients and their spouses. J Psychosoc Oncol 6:31-51, 1988 35. Germino B, Funk SG: Family functioning as a measure of functional status, in Functional Status and Quality of Life in Persons With Cancer (Monograph). Atlanta, GA, American Cancer Society, 1991 36. Stetz K: Caregiving demands during advanced cancer. Cancer Nurs 10:260-268, 1987 37. Germino BB: Family members' concerns after cancer diagnosis. Dissertation Abstracts International 44:3358B, 1984 38. Krant MJ, Johnston L: Family members' perceptions of communication in late stage cancer. Int J Psychiatry Med 8: 203-216, 1977 39. Quinn W, Herndon A: The family ecology of cancer. J Psychosoc Oncol 4(1/2):45-59, 1986 40. Fife BL: The measurement of meaning in illness. Soc Sci Med (in press). 41. Lorr M, McNair D: Manual Bi-Polar Profile of Mood States. San Diego, CA, EDITS, 1988 42. Derogatis, LR, Lopez MC: PAlS Administration, scoring and Procedures Manual-I. Riderwood, NMD, Clinical Psychometric Research, Inc., 1983 43. Pearlin, L, Lieberman M, Menaghan E, et al: The stress process. J Hlth Soc Behav 22:337-356, 1981 44. Spanier GB: Measuring dyadic adjustment: New scales for assessing the quality of marriage and similar dyads. J Marr Fam 38:15-28, 1976
When cancer occurs, it is an illness that has meaning for the lives of all members of the family. This article focuses on the meaning and significance of the illness for the partner relationship, both the individuals within the relationship and the dyad. Results of two studies are presented: one study is based on in-depth interviews with 50 individuals who were newly diagnosed with cancer and their partners, and the other study used questionnaires from 412 patients and 175 partners to obtain statistical data. Findings pointed to the importance of meaning in the adjustment of individuals, as well as the dyad. Interview data indicated that patients and their partners searched for meaning in the illness that would decrease its threat, and statistical analyses showed the significance of meaning as it applies to specific aspects of adjustment. The importance of considering meaning in care that is directed toward the prevention of problems within the dyad, which can occur as a result of coping with the stress of cancer are emphasized, and some specific recommendations are made.
Copyright © 1995 by W.B. Saunders Company
T HAS FREQUENTLY been noted that cancer is a family illness; therefore, everyone who is a part of the family must struggle to integrate the cancer experience and its meaning within their lives. The meaning of cancer to the family as a unit, and to individual members, is an important factor in the adjustment process. 1-4 The family's adjustment to cancer involves, among other things, coping with a myriad of changes, including changes in the perception of their life and their world. Family members must somehow integrate the changes brought on by the illness, and in so doing comprehend the meaning for themselves as individuals and for the family as a whole. This may include challenging long held assumptions; changing the way they view themselves, their life, and their relationships; reexamining values; and addressing fears and concerns. 3'5'6 From a theoretical systems perspective, the adult partners are the executive unit of the family; that is, their responses to a crisis provide the foundation for the responses of the family system as well as its individual members. 7 The meaning of a cancer diagnosis within the partner relationship is likely to be influenced not only by each individual partner's view of that meaning, but also by the convergence and diversity of meaning within the dyad and the dynamics within the family. Partners' perspectives of the meaning of the illness may be changed by sharing that meaning within the family and with others outside the family who see the experience in divergent ways. This article has two primary purposes. First, though little research exists in this area, relevant work on the meaning of illness for spouses or part-
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Seminars in Oncology Nursing, Vol 11, No 1 (February), 1995: pp 43-50
ners, as well as for the dyad, is reviewed. Secondly, the results of two studies are presented,one qualitative and the other based on statistical data, to describe and explain the importance of the meaning of cancer within the partner relationship. The results of this work support the following premises: first, meaning within the dyad is both shared and divergent, and partners' perceptions may affect one another; second, meaning may influence both individual and dyadic adjustment. The Concept of Meaning For purposes of this article, the meaning of the illness is defined as the nature of each individual's
From the Department of Adult and Geriatric Health, School of Nursing, University of North Carolina at Chapel Hill; Center ¢~)r Nursing Research, Indiana University School of Nursing, and School of Nursing, Universi~ of North Carolina at Chapel Hill. Barbara B. Germino, PbD, RN, FAAN: Associate Professor and Chair, Department of Adult and Geriatric Health, School of Nursing, University of North Carolina at Chapel Hill; Betsy L. Fife, PhD, RN: Research Scientist, Center for Nursing Research, Indiana University School of Nursing; and Sandra G. Funk, PhD, RN: Professor, and Associate Dean for Research, School of Nursing, University of North Carolina at Chapel Hill. Supported by grants from the American Nurses' Foundation and the National Center for Nursing Research of NIH, 1RO1BRO1331-O1A1. The statistical study was supported by the Wahher Cancer Institute and Community Hospitals of Indianapolis. Address reprint request to Barbara B. Germino, PhD, RN, FAAN, CB #7460, Carrington Hall School of Nursing, University of North Carolina, Chapel Hill, NC 27599. Copyright © 1995 by W.B. Saunders Company 0749-2081/95/1101-000855.00/0 43
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GERMINO, FIFE, AND FUNK
and the dyad's perceptions of their relationship and their world, as it is shaped by the occurrence of cancer. Meaning includes peoples' perceptions of the potential significance of the illness for the future: it is on a continuum from positive to negative, and it changes over time. There are two fundamental dimensions of the construct as it is defined here, self-meaning and contextual meaning. Selfmeaning is related to the perceived effects of the cancer experience on various aspects of the individual partner's and the dyad's identities, whereas contextual meaning is related to the perceived characteristics of the cancer experience itself within the context of the social world. 8 Importantly, finding meaning is a part of the coping process, and found meaning is an outcome of that process. REVIEW OF THE LITERATURE
Although there is a small but growing literature on the meaning of cancer to those with the disease, 8q4 little has been written on the process of finding meaning or on the impact of found meaning for partners or for patient/partner dyads. Lewis 3 has begun to directly address this issue in an essay discussing the family's work in finding meaning as part of psychosocial transitions in cancer. From the studies of meaning that include patients' perspectives, which are imbedded in a larger literature that might be labelled as research on the impact of cancer on patients, spouses/ partners, and families, some beginning insights may be inferred.
Finding Meaning: Relevance of Patient Themes to the Dyad or Family Preoccupation with consequences of the cancer diagnosis and thoughts about the future have been described as part of the development of meaning for newly diagnosed cancer patients. 12 In addition to thinking about themselves, patients reported wondering about the meaning of the illness for their families, including if their families would be burdened, how family members would manage if they died, and whether their cancer meant an increased likelihood that others in the family would suffer a similar illness. Being useful to others rather than a burden was important to these individuals, and it is a particularly significant factor within American culture.15' ~6 For persons with cancer, the process of finding meaning may involve a life review that commonly
includes reflecting on close relationships. This was exemplified in the descriptions of one group of patients that included an increased awareness of the positive aspects of some relationships, their enduring quality and the elements of companionship and mutual caring, a2 The importance of communication in this process of finding meaning has been linked to adjustment both clinically and, to some extent, empirically. Close family members have been helpful in this process by allowing patients to verbalize their personal concerns, to discuss their illness and its consequences, and to process these issues interpersonally. 17-20
Finding Meaning: Impact of Cancer on Spouses~Partners The majority of research describing the impact of cancer on partners focuses on the experiences of women coping with breast cancer and therefore on male partners. There is also a small body of literature concerning problems related to sexuality for couples coping with testicular and gynecological cancers. No published studies of same-sex partners have been reported at this time. Partners of women with breast cancer have been described as distressed even 1 year to 18 months after the diagnosis; the magnitude of that stress was similar to a stressed but normally functioning population rather than to a psychiatrically ill population.2a Indicators of stress included increased anxiety and depression and feelings of inadequacy when trying to be of help and support to their partners. Furthermore, partners reported there seemed to be little support available for them, as well as feelings that they were less supported than persons with cancer. 2~-23 The source of this distress may lie in the meaning their partner's cancer holds for them. For example, descriptive research about the meaning of the illness for family members at various points in the cancer trajectory included equating cancer with death, fear about whether the patient would suffer or die in the future, and uncertainty about the prognosis and the possibility of recurrence. 24-28 Similarly, during the initial impact following a diagnosis of lung cancer, the more extreme stress reactions in spouses have been interpreted as possibly being linked to their contemplation of the potential loss of their marriage partner. 29 It is significant that husbands of women with breast cancer frequently did not discuss their feelings of distress with either their wives or with professional care-
CANCER AND THE PARTNER RELATIONSHIP
givers. 3° They tended to be most distressed during periods of active treatment, during times when their partners made an increased number of demands perceived to be related to their illness, and during periods of recurrence. 1,26,31 Feelings of isolation experienced by partners may also be a result of a meaning of cancer held by the general population, that the distress of the illness is suffered primarily by the person with the disease.
Finding Meaning: Impact of Cancer on the Marital Dyad Although there has been speculation about the impact of breast cancer in particular on marriage relationships, research indicates that marriages that are strong before the onset of cancer generally remain strong despite reported periodic distress and communication difficulties. Breast cancer has been found to impose some strain on sexual relationships in these marriages, which is often related to patients' concerns about body image and partners' fears that sex could be harmful to the patient. Although partner acceptance of changes in body image was reported to be high, that did not alter women's anxiety about this issue or the perception that there were sexual problems. 2~ Another issue for couples coping with breast cancer was the common lack of discussion and communication of emotions either before or after mastectomy. 32 Timing was important, with patients and partners differing at specific times in how open they were to discussing their fears. Postmastectomy women had a greater need to talk about concerns than their partners. For male partners, having a positive outlook and avoiding negative views was perceived as being important to their own and their partner's adjustment; therefore, discussing negative thoughts, such as the fear of recurrence, was seen to be potentially damaging. One explanation of this orientation is that for those men, the meaning of cancer was both a threat and a challenge to be met with the defense of positive thinking. This view of how to best cope with cancer is not uncommon in the messages patients and families get from health care providers, cancer fighting organizations, and personal accounts of battles with cancer found in books and the media. However, their partners' reluctance to listen and talk about their concerns was frustrating to women who clearly needed to do this to comprehend the meaning of their experiences. 32 Likewise, in a
45
study of family relationships in lung cancer, spouses, particularly male spouses, reported suppressing their feelings to a greater extent than patients. 29 The relationship of open communication to meaning and adjustment is a recurring issue in the literature, but empirical findings are certainly not definitive. Northouse et a121 hypothesized that the degree to which openness in communication facilitates a couple's adjustment to breast cancer may depend on precancer communication patterns, as well as on each partner's preference for information and disclosure. Open communication may be most beneficial when both partners have similar needs for sharing, but timing and the meaning the illness holds for each of them may be important intervening variables. Couples who have difficulty with communication regarding the painful issues related to the illness can often benefit from professional intervention. Other factors that are a part of the impact of cancer on the relationship of the dyad, and which may be important in the meaning of the illness, include major lifestyle disruptions and role changes, 21'22'32 flexibility in how roles are defined, and family developmental level. 34 In addition, the stage of the illness and the prognosis contribute to derived meaning as indicated by the change in meaning across the illness trajectory. Families have been reported to experience significantly greater distress with advancing or terminal disease, because advanced cancer often increases care giving demands. 28 Along with commonly experienced losses of functioning and increased symptoms, terminal illness confronts the family with the reality and the meaning of approaching death, as well as with the need to come to terms with their approaching loss.
Divergence and Convergence of Meaning Within the Dyad As mentioned above, patients and their partners do not always find shared meaning in their cancer experiences. Each may encounter conflict between their own fears and their need to share them and the wish to protect, reassure, and comfort the other. 2v In the process, the meanings of cancer for them may not be communicated to their partner, particularly if they involve negative feelings, resentment toward the intrusiveness of the illness, or what they perceive to be selfish concerns, such as
46
GERMINO, FIFE, AND FUNK
those that are more concerned with their own well being than that of their ill partner. 27'36 Other divergence of meaning may stem from the partner being the caregiver for the patient. Caregivers of ill family members with advanced cancer have reported that standing by and observing the patient's illness is very difficult. 36 Throughout the cancer experience, family members struggle at times with being part of, yet outside of, the patient's experiences; moreover, uncertainty and the inability to alter or effectivelY manage some aspects of the illness may result in feelings of frustration and helplessness. 37,38 It has been postulated that the family's collection of perceptions shapes the meaning of the illness for that family. 39 That process is likely to be a complex one in which shared and diverse meanings are processed individually, with each other, and with confidantes outside the family. The meanings that are shared revolve around the cancer as a threat, the patient's symptoms, well being, the future, and the implications of cancer for the family's functioning and relationships. 4'35 However, what may be most significant in promoting quality of life may not be a convergence of meaning within the dyad and the family, but an openness to sharing the meaning held by each individual so that relationships can be deepened and strengthened. QUALITATIVE STUDY
Findings of the larger study of family members' concerns that result from a diagnosis of cancer, from which the data for this article were drawn, are reported elsewhere. 24 Families of 50 persons diagnosed as having breast, lung, and colorectal cancer within a period of 6 months were recruited from a number of medical center clinics and interviewed in their homes using a semistructured interview format, beginning with open-ended questions about the person's experiences and concerns since the diagnosis. Each family member was interviewed privately, and interviews were conducted simultaneously by teams of three interviewers. All interviews were tape recorded and transcribed. Although adult children were included in this study, the findings reported here are based on the responses of patients and their partners. A description of the meaning of the illness held by partners, a comparison of the meaning held by partners and patients, and their communication regarding the meaning of the illness is presented.
The meaning of the cancer experience to these individuals was best exemplified by questions like, "Why has this happened?" Partners asked the question in regard to themselves and less often in regard to the patient and their relationship, "Why has this happened to us?" Another primary issue concerned what life is about, and more personally, what the individual's and the couple's life has been about. The spouse of a man with lung cancer, in contemplation of her husband's poor prognosis and the possibility of his death asked, "Did we smell enough roses?" Others re-evaluated their priorities often questioning what had been. After his wife's diagnosis of breast cancer, a man described by his wife as a workaholic noted, " I don't know how important work is in the overall scheme of things." The wife of a seriously ill man reported that she was in a total state of shock as a result of the diagnosis and that she had been rethinking her life; she concluded, "Your children and your accomplishments-those are the things to get out of life." The essence of cancer's meaning for these people at this early point in the illness trajectory was uncertain about the patient's future. Many of the patients in these families were still undergoing treatment, their prognoses were as yet unclear, and their trajectories were uncertain. Issues of concern about the future included the possible spread of cancer and its recurrence, as well as the possibilities of future pain and suffering. The partner of a woman with breast cancer expressed it vividly when he said, "We don't know the beast at the end." Clearly, the diagnosis of cancer, regardless of the expected prognosis, precipitated fears of death and the anxiety of being constantly confronted with its threat. Wondering if the illness would end in death, many individuals expressed fears of losing their partner now or in the future. There were painful questions like, "How much time do I have with him?" and "Will she survive this?" or "Will she die?" One husband described these thoughts as "Just so much anguish." In addition to the possibility of death, partners were also confronted with how they would cope with the loss. Statements like, "Losing her would be a blow to me," or " I don't think I could take it I couldn't live here if he were to die," or " I could scream about it," convey painful meanings of anticipated and feared loss. The meaning of cancer for these partners was
CANCER AND THE PARTNER RELATIONSHIP
the possibility of a changed future, a future without the patient, a future of uncertainty about achieving goals and dreams, a future in which life may need to be managed differently. Some partners feared being alone, whereas others wondered what it would be like and whether they would be able to cope. A number of partners concluded that in managing the future they would have to "take life one day at a time," or that "life is gonna keep on g o i n g . " Some couples decided to carry out planned trips, and others vowed to "try to enjoy life more in the time we have together." For a number of subjects, issues pertaining to relationships and intimacy were precipitated by the cancer experience. Changes in relationships that had occurred or anxiety about relationships that might change were a common theme, as were communication difficulties and changes in communication patterns. The meanings expressed around this theme were striking. One husband said about communication with his wife, " I won't tell her about my feelings-it would contribute nothing," whereas a wife noted that she "Didn't want to say the wrong thing to hurt his (her husband's) feelings." The college professor husband of a physician with advanced breast cancer described his ambivalence about discussing her illness saying, " I t activates grief." For many partners, the cancer experience was characterized by the struggle to manage the patient's illness and its effects on balancing the demands of daily living within a family. In this context, partners worried about the patient's ability to continue to work in spite of the effects of the cancer and its treatment. They also worried about losing time at work themselves because of the illness demands and balancing illness demands with the demands of their daily lives. At issue for partners with heavy demands in both areas was getting adequate rest and staying healthy so they could continue to care for the patient. Concern about a lack of energy if the illness were to persist with a high level of demand and thoughts of others who might help were also common among partners. What cancer means in terms of balancing dayto-day living with illness demands was the most common issue for both patients and partners, and the specific process of defining the meaning of the illness for themselves, their relationship, and their family was the least common. Beyond these clearly shared meanings patients and partners di-
47
verged in several ways. In all areas of concern, patients focused primarily on themselves, whereas partners focused equally on their concerns about the patient and themselves. The second most common issue for partners was intimacy and relationships, whereas for patients it was the future in general and the trajectory of their illness. When subjects were asked if they had expressed their concerns to anyone within or outside of the family, both patients and partners were more likely to have discussed them with each other than with anyone else and least likely to have discussed them with an outside confidante or extended family member. However, it is particularly significant that there were many aspects of the meaning the illness held for them which they indicated they had not discussed with anyone at all. QUANTITATIVE STUDY
The findings presented below are part of a larger study of the adaptation of patients and partners to the stress of cancer at four specific points in the illness trajectory: the periods of (1) diagnosis, (2) first remission, (3) first recurrence, and (4) metastatic disease; however, the data are not differentiated according to these criteria in the results discussed here. The sample includes 412 patients representing various forms of cancer and 175 partners; the data are not paired. Meaning was measured using the constructed meaning scale. 4° It is a self-report measure that includes eight statements that refer to the impact of the illness on individuals' identities, their relationships with others, and their perceptions of the future. Cronbach's alpha of .81 was calculated, and other indicators of the reliability and validity of the scale are discussed elsewhere. 4° The measure uses a four-point, Likert-type scale with responses that range from strongly agree to strongly disagree. Scoring is on a continuum from positive to negative, with the highest possible score indicating the most positive perspective of the illness. Examples of the items include: " I feel cancer is something I will never recover from," and " I feel that I am the same person as I was before my illness." The items in the questionnaire for partners included the same content, but they were worded to be applicable to this group. Other variables discussed here in terms of their relationship to meaning include: emotional re-
48
sponse, specifically anxiety and depression; personal control; general adjustment, as well as adjustment relative to family relationships and sexuality; and communication and satisfaction within the partner relationship. Emotional response was measured by the Bi-Polar Profile of Mood States, at the adjustment variables by the Psychological Adjustment to Illness Scale, 42 personal control by the Mastery Scale, 43 and the partner relationship variables, such as communication and marital satisfaction, by the Dyadic Adjustment Scale. 44 All of these measures have established reliability and validity that are discussed in the references given above. Initially, a t-test to evaluate the difference of means between patients and partners was carried out for each variable included in this study. It is significant that there was no difference between patients and partners with respect to the variable of meaning, with the mean score for both groups being 22. The highest possible score on this scale, which indicates the most positive meaning, is 32, and the lowest possible score, indicating the most negative meaning, is 8. The only variables in which there were significant differences for patients and partners were anxiety, depression, and family adjustment (P < .05). Partners experienced greater anxiety and depression, whereas patients had greater difficulty adjusting in terms of family relationships. Second, correlations were computed to study the relationship of meaning to individuals' emotional status, their sense of personal control, psychological adjustment, and the quality of the patient/ partner relationship. These coefficients are given in Table 1. As indicated, the Pearson correlations between meaning and most of these variables were statistically significant for both patients and partners. However, the magnitude of the coefficients for some variables differed between these two groups. The relationship between meaning and emotional response, meaning and personal control, and meaning and family adjustment was greater for patients. Specifically, the more positive the meaning, the more positive the emotional response or the lower the levels of anxiety and depression, the greater the sense of personal control, and the more positive the adjustment. However, the relationship between meaning and communication and meaning and sexual adjustment was greater for partners, that is, the more positive the meaning the better the communication and sexual adjustment within the
GERMINO, FIFE, AND FUNK
relationship from the partners' perspectives. Interestingly, meaning was not correlated with the two communication variables for the patient group. DISCUSSION
Both of the studies presented in this article support the premises set forth in the introduction. First, qualitative results indicated both similarities and differences in the specific meaning the illness held for patients and partners, whereas statistical findings indicated patients do not view the illness from a more negative perspective than do partners, or vice versa. Furthermore, based on the scores obtained using the constructed meaning scale, both groups held a fairly positive perspective. Interview data point to the similarity between patients and partners with respect to anxiety about the future in that this was a predominant source of distress precipitated by the diagnosis of cancer. Both groups reflected on the past and ways they could make the most of the present and the future. However, although these groups shared apprehension about the threat to the general well being of each family member, the dyad, and the family unit, there were important differences in the specific anxieties related to this issue for patients and partners. Patients expressed fears of pain and death, and great concern about how the family would manage without them. On the other hand, partners anticipated the significance of their loss and the possibility of confronting a future characterized by change and uncertainty. Partners also expressed anxiety concerning the need to balance Table 1. Correlation of Meaning with Emotional Status, Personal Control, Relationship Variables, and Psychological Adjustment for Patients and Partners Variables Anxietyt Depressiont Personal control Talk together Confide in each other Satisfaction with partner relationship Domestic adjustment¢ Sexual adjustmentt General psychological adjustmentt
Patients
Partners
.41 * .51" .52" .10 .10
.28" .33* .44" .18" .23*
.26* -.46* -.38*
.27* -.35* -.53*
- .59*
- .56*
* P < .05 (two-tailed) 1 These variables are coded with a high score indicating a positive emotional response. $ These variables are coded with a low score indicating a positive adjustment.
CANCER AND THE PARTNER RELATIONSHIP
49
the demands of work and daily living with the role of caretaker. For some, the fear was as fundamental as finding the energy to cope with these increased demands. To reiterate it is notable that the data indicated in a t-test difference of means that partners experienced greater anxiety and depression than patients (P < .05). During interviews, both patients and partners indicated that they were more likely to communicate these important aspects of the meaning of the illness to each other than to anyone else, yet because of feelings of pain and grief aroused by these kinds of discussions, many of them had chosen not to talk about their fears and anxieties with anyone at all. The data indicated communication within the dyad was significantly associated with the development of meaning for partners but not for patients. However, communication was significantly correlated with lower levels of anxiety and depression, a greater sense of personal control, and more positive adjustment for both groups (P < .05, results not shown). Findings from both studies also supported the second premise set forth in the introduction that meaning is influential in the adjustment of both patients and partners, as well as in the dyad. Interview data pointed to the fact that both patients and partners searched to find meaning in the illness that would decrease its threat. This was supported by the statistical finding that indicated the meaning formulated by both groups tended to be more positive than negative. Furthermore, there was a significant relationship between meaning and particular aspects of adjustment as shown in Table 1. Specifically, meaning was significantly associated with domestic adjustment, sexual adjustment, and overall adjustment for both patients and partners, that is, the more positive the meaning constructed by the individual the more positive their general psychological adjustment, and their adjustment within the family and the dyad. Other correlations given in Table 1 indicate the important association between meaning and other variables that provide a more indirect measure of adjustment: specifically, emotional response, personal control, and satisfaction within the dyadic relationship.
CONCLUSIONS
Perhaps of greatest significance is the relevance of these findings to the care of people coping with the threat of cancer. There are several points to be made here. First is the importance of assessing the meaning the illness holds for individuals because it may provide some indication of their ability to adjust to the stress with which they are forced to live. When individuals view their illness from a highly negative perspective and the future with great anxiety and without hope, it is important to monitor this attitude for change with on-going assessments and to make referrals for psychosocial intervention when this seems warranted. As indicated by the data presented from these studies, it is crucially important to care for the partners of patients, as well as the patients themselves. This sometimes presents a challenge, because partners are frequently less accessible, and their needs may be less apparent; however, the family is a system, and the behavior and emotions of one individual in response to a crisis affect each family member and the family as a whole. 7 Finally, painful as it may be, findings point to the need for communication within the dyad if optimal adjustment is to be achieved. This can be encouraged during the process of providing health care. It is not necessarily important that individuals within the dyad maintain similar perspectives with respect to the illness, but it is important they are able to respect and understand their differences and support one another in their efforts to live both in the present and future in a way that provides the deepest sense of satisfaction for each of them. However, as discussed in the article in this issue by Cohen, "The Meaning of Cancer and Oncology Nursing," nurses must first become aware of the meaning cancer holds for themselves as caregivers before helping others cope with this central aspect of the cancer experience. ACKNOWLEDGEMENT
Betsy L. Fife gratefully acknowledgesthe support provided by the medicaland nursing staffsof Indiana UniversityMedical Center and CommunityHospitals of Indianapolis in obtaining data for this research. The financial support of the Walther Cancer Institute in conducting the research is appreciated.
REFERENCES
1. Lewis FM, Woods NF, Hough EE, et al: The family's functioning with chronic illness in the mother: The spouse's perspective. Soc Sci Med 29:1261-1269, 1989
2. LewisFM, HammondMA: Psychosocialrehabilitation of the familyto breast cancer: A longitudinal analysis. J Am Med Worn Assoc 47:194-200, 1992
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3. Lewis FM: Psychosocial transitions and the family's work in adjusting to cancer. Semin Oncol Nurs 9:127-129, 1992 4. Lewis FM, Hammond MA, Woods NF: The family's functioning with newly diagnosed breast cancer in the mother: The development of an explanatory model. J Behav Med 16:351-359, 1993 5. Feldman DJ: Chronic disabling illness: A holistic view. J Chronic Dis 27:287-291, 1974 6. Stetz KM, Lewis FM, Primomo J: Family coping strategies and chronic illness in the mother. Fam Rel 35:515522,1986 7. Minuchin S: Families and family therapy. Cambridge, MA, Harvard University Press, 1974 8. Fife BL: The conceptualization of meaning in illness. Soc Sci Med 38:309-316, 1994 9. Barkwell DP: Ascribed meaning: A critical factor in coping and pain attenuation in patients with cancer related pain. J Palliat Care 7:5-14, 1991 10. Coward DD: Self-transcendence and emotional wellbeing in women with advanced breast cancer. Oncol Nurs Forum 18:857-863, 1991 11. Lewis FM: Attributions of control, experienced meaning and psychosocial well-being in patients with advanced cancer. J Psychosoc Oncol 7:105-119, 1989 12. O'Connor AP, Wicker CA, Germino BB: Understanding the cancer patient's search for meaning. Cancer Nurs 13: 167-175, 1990 13. Steeves R: Patients who have undergone bone marrow transplantion: Their quest in meaning. Oncol Nurs Forum 19: 899-905, 1992 14. Taylor SE, Litchman RR, Wood JV: Illness-related and treatment-related factors in psychological adjustment to breast cancer. Cancer 55:2506-2513, 1985 15. Koestenbaum P: Is there An Answer To Death? Englewood Cliffs, NJ, Prentice-Hall, 1976 16. Baird RM: Meaning in life: Discovered or created? J Rel Hlth 24:117-124, 1985 17. Gotcher JM: Intrapersonal communication and psychosocial adjustment. J Psychosoc Oncol 10(3):21-39, 1992 18. Jackson DD: Classic reprints: Family homeostasis and the physician. Fam Sys Med 2:80-86, 1986 19. Jones RB: Life-threatening illness in families, in Garfield CA (ed): Stress and Survival: The Emotional Realities Of Life-Threatening Illness. St. Louis, MO., Mosby, 1979 20. Siegel B: Love, Medicine and Miracles. New York, NY, Harper & Row, 1988 21. Northouse LL, Cracchiolo-Caraway A, Appel CP: Psychologic consequences of breast cancer on partner and family. Semin Oncol Nurs 7:216-223, 1991 22. Northouse LL: Social support in patients' and husbands' adjustment to breast cancer. Nurs Res 37:91-95,1988 23. Oberst M, James R: Going home: Patient and spouse adjustment following cancer surgery. Top Clin Nuts 7:4657,1985 24. Germino B, Funk SG, Burman SL, May AD: Cancer as
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a family experience: Concerns of family members in the first six months. (in press) 25. Lewis FM: The impact of cancer on the family: A critical analysis of the research literature. Pat Ed Couns 8:269-289, 1986 26. Northouse LL: A longitudinal study of the adjustment of patients and husbands to breast cancer. Oncol Nurs Forum 16: 511-516, 1989 27. Sales E: Psychosocial impact of the phase of cancer on the family: An updated review. J Psychosoc Oncol 9(4):1-19, 1991 28. Sales E, Schulz R, Siegel D: Predictors of strain in families of cancer patients: A review of the literature. J Psyehosoc Oneol 10(2):1-25, 1992 29. Cooper ET: A pilot study on the effects of the diagnosis of lung cancer on family relationships. Cancer Nurs 7:301-308, 1984 30. Maguire P: The repercussions of mastectomy on the family. Intl J Faro Psychi 1:485-503, 1981 31. Baider L, Kaplan De-Nour A: Couples' reactions and adjustment to mastectomy: A preliminary report. Intl J of Psychiatry Med 14:265-276, 1984 32. Litchman R: Close relationships after breast cancer. Unpublished doctoral dissertation. Uuiv: of California, Los Angeles, CA, 1982 33. Gotay CC: The experience of cancer during early and advanced stages: The views of patients and their mates. Soc Sci Med 18:605-613, 1984 34. Vess JD, Moreland Jr, Schwebel AI et al: Psychosocial needs of cancer patients: Learning from patients and their spouses. J Psychosoc Oncol 6:31-51, 1988 35. Germino B, Funk SG: Family functioning as a measure of functional status, in Functional Status and Quality of Life in Persons With Cancer (Monograph). Atlanta, GA, American Cancer Society, 1991 36. Stetz K: Caregiving demands during advanced cancer. Cancer Nurs 10:260-268, 1987 37. Germino BB: Family members' concerns after cancer diagnosis. Dissertation Abstracts International 44:3358B, 1984 38. Krant MJ, Johnston L: Family members' perceptions of communication in late stage cancer. Int J Psychiatry Med 8: 203-216, 1977 39. Quinn W, Herndon A: The family ecology of cancer. J Psychosoc Oncol 4(1/2):45-59, 1986 40. Fife BL: The measurement of meaning in illness. Soc Sci Med (in press). 41. Lorr M, McNair D: Manual Bi-Polar Profile of Mood States. San Diego, CA, EDITS, 1988 42. Derogatis, LR, Lopez MC: PAlS Administration, scoring and Procedures Manual-I. Riderwood, NMD, Clinical Psychometric Research, Inc., 1983 43. Pearlin, L, Lieberman M, Menaghan E, et al: The stress process. J Hlth Soc Behav 22:337-356, 1981 44. Spanier GB: Measuring dyadic adjustment: New scales for assessing the quality of marriage and similar dyads. J Marr Fam 38:15-28, 1976