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Advanced prostate cancer patients’ relationships with their spouses following hormonal therapy
Advanced prostate cancer patients’ relationships with their spouses following hormonal therapy
Keywords: prostate cancer, hormonal therapy, side-effects, spouses, coping, qualitative
Die Beziehung von Patienten mit fortgeschrittenem Prostatakrebs zu ihren Ehefrauen nach erfolgter Hormontherapie
Liora Navon, Lecturer, Department of Nursing, School of Health Professions, Sackler Faculty of Medicine, Tel Aviv University, Ramat Aviv, Tel Aviv 69978, Israel Tel.:+972 3 640 7157; Fax: +972 3 640 9496; E-mail: [email protected] Amira Morag, RN, MA, Oncology Clinical Nurse Specialist, Oncology Unit, Sheba Medical Centre, Tel Hashomer 52621, Israel Correspondence and offprint requests to: Liora Navon
Die vorliegende Studie untersucht bei Patienten mit fortgeschrittenem Prostatakrebs den nachteilig Einfluss, den die Nebenwirkungen einer Hormontherapie auf die Aufrechterhaltung ihrer ehelichen Beziehung haben, wie sie vor Beginn der Behandlung bestand. Sie befasst sich weiter mit der Frage, wie die Patienten mit den dabei auftretenden Schwierigkeiten fertig wurden. Schliesslich werden Folgerungen fuer notwendige Pflegemassnahmen in der Onkologie gezogen. ImVerlauf der Untersuchung wurdenTiefeninter views mit 15 israelischen Patienten durchgefuºhrt, die an Prostatakrebs erkrankt waren. Die gewonnenen Daten wurden mit Hilfe der konstantenVergleichsanalyse weiter verarbeitet. Die Ergebnisse belegen, dass sowohl unterstuetzendes Verhalten der Ehepartner als auch die Versuche der Patienten selbst, der Krankheit nicht nachzugeben, zu genereller Aufrechterhaltung der Beziehung fuehrten, wie sie vor Behandlungsbeginn bestanden hatte. Wenn umgekehrt ein Patient durch seinen Ehepartner Ablehnung erfuhr und demzufolge Resignation empfand, waren Stoerungen der ehelichen Beziehungen zu verzeichnen.Wo andererseits die Aufrechterhaltung der Partnerschaft nur vorgespiegelt wurde, folglich eine stete emotionale Belastung als Preis bezahlt werden musste, wurde die Unterbrechung der Beziehung von den Patienten letztlich als positiv aufgenommen. Diese Resultate wurden vor dem Hintergrund der Einschraenkungen analysiert, welche die Patienten auf Grund der Hormontherapie in Bezug darauf erfuhren, wie sie mit ihrer Situation im Allgemeinen zurecht kamen und wie sie sich an nichtsexuellen Aktivitaeten erfreuen konnten, Einsch raenkungen, die ihre Faehigkeiten zur Loesung ehelicher Probleme erheblich beeintraechtigten. Die Patienten wuºrden von speziellen Ausbildungsmassnahmen fuer das Pflegepersonal in der Onkologie profitieren, die sich auf die einzigartigen Schwierigkeiten richten, denen sie und ihre Partner ausgesetzt sind. Darueber hinaus kaemen ihnen gezielte Angebote an Information und Beratung durch das Pflegepersonal zugute.
European Journal of Oncology Nursing (2003) 7 (2), 73^ 80 & 2003 Elsevier Science Ltd. All rights reserved. doi:10.1016/S1462-3889(03)00022-X
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The paper analyses the adverse impact of the hormonal therapy’s side-effects on advanced prostate cancer patients’capacity for maintaining their pre-treatment spousal relationships, the pros and cons of their ways of coping with the diff|culties involved, and the implications of these issues for oncology nursing interventions. In-depth interviews were conducted with 15 Israeli prostate cancer patients, and the data were processed according to the constant comparative analysis method.The f|ndings show that partners’ supportive attitude and patients’ attempts to stage resilience led to pretreatment relationships’ maintenance, and that, accordingly, patients’ rejection by their partners and resignation to this diff|culty resulted in spousal ties’disruption. However, whereas the relationships’ maintenance came at the cost of burdensome constant pretence, their disruption was eventually reconstructed by the patients in positive terms. These f|ndings are analysed against the backdrop of the constraints imposed by the hormonal therapy on patients’ general coping competence and ability to enjoy non-sexual activities, which impair their capability to solve their marital problems more effectively. They would thus benef|t from training oncology nurses who specialize in the unique diff|culties facing them and their partners, and from oncology nursing interventions that focus on relevant information provision and counselling. & 2003 Elsevier Science Ltd. All rights reserved.
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Liora Navon, Amira Morag
74 European Journal of Oncology Nursing
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INTRODUCTION One of the most problematic psychosocial aspects of prostate cancer is its potential for jeopardizing patients’ intimacy with their spouses. This effect is commonly attributed to the life-threatening nature of the disease and its adverse impact on its sufferers’ vitality, sexuality and self-concept (Clark et al. 1997; Lavery and Clarke 1999; Phillips et al. 2000; Bokhour et al. 2001). Yet, although the intensity of these difficulties is severest among those with advanced-stage cancer who receive hormonal therapy (Kornblith et al. 1994; Fitch et al. 2000; Chapple and Ziebland 2002), only little is known about their relationships with their partners following the treatment. The present paper is aimed at analysing this issue and its implications for oncology nursing interventions. Patients with advanced prostate cancer may experience pain, fatigue, decreased mobility, constipation, scrotal oedema, urinary retention and psychological distress (Fitch et al. 2000). The hormonal therapy for the disease is palliative with the intent to cause transient tumour regression through androgen deprivation. Elimination of androgens can be achieved through bilateral orchidectomy or non-surgical treatment, consisting of exogenously administered luteinizing hormonereleasing hormone (LHRH) analogues and antiandrogens (Vaughn 2000; Iversen 2002). Depending on the specific type of therapy, sideeffects may include loss of libido, erectile dysfunction, gynecomastia, weight gain, female distribution of fat, loss of bodily hair, hot flushes and sweats, nausea, osteoporosis, decreased vitality and mood disturbances (Steginga et al. 2001; Iversen 2002). These side-effects may have an influence on patients’ ties with their partners beyond their likelihood to undergo changes due to the chronicity of the disease (see Rolland 1994) and the unique difficulties of coping with cancer (see Spencer et al. 1998). However, most of the data gathered thus far on this issue are incomplete, because of their reliance on studies focusing on patients’ general needs or on questionnaire surveys that do not fully reveal the subjects’ point of view. Even the few studies that have concentrated on marital relationships only rarely differentiated patients undergoing hormonal therapy from those untreated or receiving other treatments such as radiotherapy or radical prostatectomy. It is not surprising then that, as shown in their following brief summary, their findings are self-contradictory and difficult to explain. Most of the studies indicate that patients’ loss of libido, impotence and the resulting low European Journal of Oncology Nursing 7 (2), 73-- 80
masculine self-image lead to the irreversible deterioration of their relations with their partners (Tannock et al. 1989; da Silva et al. 1993; Herr et al. 1993; Heyman and Rosner 1996). Such patients reportedly fear that they are no longer capable of fulfilling their role as husbands and hence they feel threatened by their spouses’ expressions of affection (Clark et al. 1997; Lavery and Clarke 1999). Other findings, however, indicate that their failure to maintain intimacy does not stem from their sexual dysfunction but rather from their mood disturbances, low self-esteem or fear of rejection arising from the cancer experience (Kornblith et al. 1994; Lavery and Clarke 1999). Besides their incoherence, the analyses of such causal factors are marked by paucity of detailed information on their specific impact on the intimacy between spouses and by negligence of the unique bodily changes caused by the hormonal treatment. This probably results from patients’ preference to avoid painful discussions of the difficulties entailed in their disease. Their tendency to sidestep the problems and the consequent suppression of their partners’ willingness to talk them over are viewed by some authors as additional causes for marital tensions (Kornblith et al. 1994; Lavery and Clarke 1999). Such tensions are also ascribed to patients’ equation of intimacy with sexual relations, which hinders their spouses’ attempts to preserve it through alternative expressions of love and emotional closeness (Heyman and Rosner 1996; Lavery and Clarke 1999; O’Rourke 1999; Boehmer and Clark 2001). Interestingly enough, all the above analyses attribute the problems to the patients’ emotional state or behaviour whereas the spouses’ role in their creation is overlooked. Furthermore, some of the patients included in the cited works and the majority of other studies’ participants do not conform to the picture arising from these analyses. According to their accounts, following the disease’s diagnosis and treatment their intimacy with their spouses has been maintained or even reinforced. The improvement is reportedly reflected in the strengthening of partners’ mutual respect, support and feelings of closeness (Clark et al. 1997; Lavery and Clarke 1999; Fitch et al. 2000; Poole et al. 2001; Chapple and Ziebland 2002). Yet, similar to the therapy’s adverse consequences, the actual manifestations of such positive effects have not been thoroughly investigated. The meagre information available on this issue may explain why the contradictory evidence of disrupted and maintained/reinforced intimacy has not yet been explained beyond its attribution to diseases’ general potential to either create or
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Participants and setting The study, conducted in Israel, included 15 patients with prostate cancer who were receiving hormone therapy at an oncological outpatient clinic for a continuous period of 6 months to 3 years. Eight of them were treated with both LHRH agonists and antiandrogens, and the remaining participants -- with only one of these medications. Prior to the hormonal therapy, six underwent orchidectomy, and five radiotherapy. The participants’ average age was 70 years (ranging from 57 to 85 years), and their mean educational level was 12 years of schooling (ranging from 8 to 18 years). All of them were married or cohabited with a spouse, and all had children. Eight were working, while seven had retired before the diagnosis.
Data collection The research, conducted by means of in-depth interviews, was approved by the Institutional Review Board for the Protection of Human Subjects at the medical centre where the study was conducted. After being notified of their right to withdraw from the research and that the data gathered would be used solely for scientific purposes, the participants signed an informed consent form. All the interviews were performed by one of the authors, who is an oncology nurse specialist. They were carried out in the patient’s home during two sessions, each lasting, on average, 2 hours. The first interview questions were unstructured, allowing the subjects to describe the course of their illness and its physical, psychosocial and familial implications as they saw them. The remaining questions were more focused, concentrating on the pre-treatment daily life and spousal ties, the therapy’s side-effects, their impact on the general quality of life and specifically on spouses’ relationships, and the pros and cons of the strategies employed for coping with their implications. Because of the sensitive nature of the subjects discussed, the interviewees strongly objected to the suggestion that their accounts would be tape-recorded. They gave their consent, however, to a written record-
Data analysis The data were processed according to the constant comparative method of data analysis (Glaser 1978; Stern 1980; Wilson 1985). The interviews’ transcripts were coded by the two authors separately, and in the few cases of disagreement, a discussion was held to reach consensus (Miles and Huberman 1984). The coding process included repeated reading of the interviews’ transcripts, in-depth analysis of the identified categories and themes, and their interpretation on the basis of their comparison to relevant literature (Strauss and Corbin 1990). The sampling was terminated after the emerging theoretical categories were considered to be saturated. The analysis yielded two main patterns of relationships between spouses, representing the disruption versus maintenance of those preceding the hormonal therapy. Examination of the side-effects’ impact marked in each, and the strategies adopted for coping with it, unexpectedly revealed that each of the patterns was described by the very same patients as having both advantages and disadvantages. These ambiguities, their interpretation and their clinical implications are presented below.
RESEARCH FINDINGS Spouses’ relationships before the treatment The research participants reported that before receiving the hormonal therapy their relationships with their spouses had been satisfactory or, at the least, normal and devoid of any particular problems, apart from ‘the usual arguments that happen in all families’. They described their closeness with their partners and their enjoyment in travelling together and attending social and family events. Even those whose wives had asked to cease sexual relations due to advanced age informed that their close relationships had not been affected, since masturbation and sexual fantasies provided them with a satisfactory substitute. The other interviewees regarded the sexual relations with their partners as their main means of achieving intimacy with them and as the major source of pleasure in their lives. For example: We used to have good times together and travel abroad a lot, but I felt the strongest emotional intimacy of all when my wife and I had sexual relations. We were like a pair of turtledoves. Throughout the day, all I would think about was the night ahead. I’d come home from work early, and get ready for what we would share later that European Journal of Oncology Nursing 7 (2), 73-- 80
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RESEARCH METHODS
ing, and hence as full and as accurate notes as possible of their own words were taken during the interview sessions (Taylor and Bogdan 1984).
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ameliorate tensions between spouses (Kornblith et al. 1994; Fitch et al. 2000). The present paper attempts to shed light on this unclear picture, on the basis of patients’ detailed accounts that have provided an opportunity to elaborate the understanding of the changes that their ties with their partners undergo following the hormonal treatment.
76 European Journal of Oncology Nursing night. Sex gives a person so much, it nurtures companionship, endeavours, and success. Even if a man doesn’t have good sex, he can still dream and fantasize about sex that will never happen.
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Another aspect of the pre-treatment relationships that the patients enlarged upon was their role as the family head. They identified successful performance of this role with the manifestation of qualities they believed to be masculine, such as leadership, determination, uncompromisingness and a propensity to protect the weak, to take responsibility and to be achievementoriented. All of them maintained that before they received hormonal treatment, it was these qualities that had helped them to perform domestic tasks requiring physical and mental strength, and to bolster the family’s economic status, thereby winning their spouses’ and children’s esteem. In this context, one of them related: My wife knew she always had someone to depend on. A man has to be serious and responsible, because he must provide a livelihood for his family. Being a man means being a rock, taking charge over women, protecting them, and never shirking responsibility. At home, I used to do everything, I was the one in control. I took care of everyone, and my wife and children respected me as a result.
Patients’condition following the treatment Once their illness was diagnosed, the patients assumed that their ‘masculine’ skills would help them to recuperate and return to their former tranquil routine. Those hopes were dashed when, following the hormonal therapy, they realized they had become passive and lacked both energy and the capacities they identified with their masculinity. Their surprise at the changes that their personality underwent were coupled with the appalling understanding that the treatment had stripped them not only of their sexual pleasure, their erotic dreams and fantasies, but of their ability to enjoy non-sexual activities as well. At the same time, as the following quotation shows, their longing to be loved remained unabated as did their yearnings for the days when they experienced sexual thrills. This treatment is like a tranquillizer. It diminishes the sexual urge, but not the longing to be loved. Initially I still hoped I could at least fantasize about sex, but I lost my optimism when I understood that everything, even the erotic dreams, had vanished. Ever since I became sexually inactive, I don’t feel like doing anything. I’ve become passive. All of a sudden, my chief masculine quality -- my fighting spirit -- simply disappeared. I don’t understand why this is, but I’m no longer thrilled, not even by beautiful sights or experiences I have. For instance, I still go abroad with my wife, but it’s only for her sake, because I don’t enjoy anything I see there. European Journal of Oncology Nursing 7 (2), 73-- 80
The patients’ difficulty in facing these changes was compounded by their feelings of self-disgust and confusion generated by the hot flushes and the feminization of their bodies. All reported that they avoided exposing their bodies to strangers, trying to keep their illness secret. For example: Only my wife knows about the illness. I dress in a way that conceals everything, because even I can’t bear to see what I look like. Even now I can’t stand in front of the mirror naked. That’s not a man. My chest has grown, my testicles and penis have shrunk. Since the treatment, I also suffer from hot flushes, like menopausal women.
Intimacy’s disruption following the treatment Eight interviewees reported that the changes in their personality and bodily appearance had created a physical and emotional distance between them and their spouses. According to their accounts, due to the disgust evoked by the sight of their bodies, their partners refused to have any physical contact with them, and some even feared that their illness was contagious. Moreover, without consulting them, the spouses took over domestic roles that they had previously assumed, treated them slightingly, and thus diminished their worth in their children’s eyes. The following quotation clarifies why such reactions and quarrels over the need to open windows that were sparked by the hot flushes eventually spurred the interviewees to sleep in a room of their own. The love we shared is over. My wife was afraid that my illness would infect her, and refused any physical contact with me. I became repugnant to her. Once I no longer satisfied her in bed, she started answering back and doing as she pleased. Even the children began keeping their distance from me. Whenever I had to open a window because of the hot flushes, my wife said I was making her ill. Things quietened down at home only when I moved into the living room.
Such reactions on their spouses’ part kindled feelings of disappointment and humiliation among the patients, and aroused their suspicion towards the sincerity and loyalty of other relatives and friends. They did, however, admit that they themselves contributed to the creation of the situation they encountered. They noted that following the therapy, they had stopped being useful at home, made no attempts to prevent their diminished status within the family, and could not muster the mental powers necessary to improve relationships with their spouses. As shown below, some justified their behaviour by maintaining that a man lacking sexual capabilities is worthless and hence not entitled to make any demands on his wife. My wife’s attitude made me feel useless. As a result, I lost faith in people. I distrust everyone, and her
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Despite the friction between me and my wife, we no longer quarrel with each other. She is now relieved because I can’t have sexual relations with her, and this consoles me a little for the major damage I’ve suffered. I’m glad that I’ve come out of this whole business a more considerate man. Thinking positively has made me calmer. Our daughter often wonders how come our relationship’s improved, and I smile inwardly and think, ‘‘What would happen if she knew the reason?’’
Intimacy’s maintenance following the treatment In utter contrast to the interviewees described thus far, the seven other research participants enjoyed their spouses’ care and understanding. This supportive attitude was expressed through displays of affections, concern about the patients’ health, time devoted to discussing their fears and hopes, and their encouragement to participate in such joint leisure activities as cooking meals or reading books together. Other means of preserving the pre-treatment relationship patterns included leaving spouses’ division of roles unchanged, and continuing to consult the patients on financial and domestic issues. As the following quotation demonstrates, some of the partners encouraged the interviewees to have non-coital sex with them, and even to try and experience sexual stimulation. From the very start of the therapy, my wife took care of me. She is very considerate, and tries to demonstrate her love for me. She always suggests, ‘‘Even though you can’t have sex with me, hug me, kiss and stroke me, it may lead to something, who knowsy’’. We spend a lot of time together, cooking, and enjoying each other’s company. She
Just like those who contributed to intimacy’s disruption, these patients, too, played an active role in the attempt to keep the pre-treatment ties unchanged. They cooperated in the sexual activities initiated by their partners, and made efforts to project more understanding and friendliness than they had before receiving the hormonal therapy. The majority also tried to prove to their spouses that they were still capable of making the right financial decisions in the household, of supporting the family and of caring for the children. For example, one of them related: I’m still supporting my wife, and I take care of all her needs. I let her see that I’m the same responsible, reliable man, and that in fact nothing has changed. In our relationship, I’ve started placing more emphasis on other aspects of intimacy, like companionship, understanding and love in the platonic sense of the word. At the start of the treatment, I was deeply involved in my own problems, but now I pay far more attention to my wife. Even in bed, I keep on playing our game, to give her satisfaction, and I think she’s enjoying herself.
According to the interviewees, although these relationship patterns, in comparison to pretreatment intimacy, were characterized by more intense emotional companionship, they had to pay a heavy price for them. As time passed, their need to stage intimacy in and out of bed became increasingly burdensome and even evoked among some of them disgust and self-pity. They also reported that their attempts to maintain their status in the family through the performance of ‘masculine’ roles at home were marked by lack of enthusiasm and interest. The following quotation shows that the need to conceal these feelings, too, turned into an onerous obligation. I even lost interest in handling the family finances. I’m still taking care of the family’s future, but if I could have my way, I’d prefer to hand over the whole issue to someone else. The intimate relationship with my wife continues, even though I don’t enjoy it and actually dislike it. I just pretend I’m enjoying it. I let her hug and kiss me, but I realize it’s pathetic, and it makes me feel angry and sorry for myself. I believe she simply pities me, we both know there’s nothing behind it. At first, our conversations about all these emotions were very helpful, but then I stopped talking because I realized it was important for her to continue this way. I have to bear the difficulties silently, I simply have no other choice.
DISCUSSION The findings show that the impact of the hormonal therapy’s side-effects on patients’ relationships with their spouses is more wideEuropean Journal of Oncology Nursing 7 (2), 73-- 80
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It transpires, however, that once these patients moved into separate bedrooms and the quarrels with their spouses abated, they began to attribute advantages to the physical distance, such as contribution to defusing pre-treatment tensions. They described how the extinguishing of their sexual needs had imbued them with calm and liberated them from the guilt feelings they had harboured previously, when their sexual demands were an imposition on their partners. As a result, they felt they had become more relaxed and considerate individuals, and some even found consolation for the loss of potency in the relief their spouses gained from that loss. As illustrated below, such positive attitude to the changes that the relationships had undergone helped the interviewees to conceal them from friends and family.
shows me that I’m still in charge of money matters; I think that, in this way, she’s trying to prove to me that I’m still the man of the house.
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too. I can’t ask or demand anything of her because I am no longer a man. After the recovery, I should have reclaimed my status as her husband, should have put an end to the separation she’d enforced on me, but I just couldn’t do it. I’ve stopped arguing about issues that were once important to me, like her attitude towards me. At home, I’m superfluous and irrelevant.
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78 European Journal of Oncology Nursing
ranging than that documented in the literature. It may encompass spouses’ daily, sexual and leisure activities, the emotional closeness, sincerity and patterns of communication between them, the roles and relative status of each within the family, and even their willingness to share the same bedroom. Yet, adverse changes in these domains have been experienced only by some research participants whereas others have managed to maintain intimacy with their partners. The lack of variation in the pre-treatment relationships between the interviewees and their spouses suggests that the clue to this difference should be sought in post-treatment factors. The patients’ accounts reveal in this regard that contrary to the picture arising from the literature (Kornblith et al. 1994; Heyman and Rosner 1996; Boehmer and Clark 2001), not only their own reaction to the difficulties entailed in their physical and mental condition but that of their partners, too, determine the chances of intimacy’s maintenance. Overt rejection on the part of spouses and patients’ subsequent resignation to the difficulties have worsened their relationships, but such deterioration has been prevented in cases of supportive spouses and patients’ efforts to stage resilience. However, it has been found that in the long run spouses may benefit from pulling away from each other whereas the maintenance of intimacy among those who cling to each other may come at a significant price. This implies that by depicting the process that such relationships undergo merely in terms of deterioration versus maintenance/ improvement (Clark et al. 1997; Lavery and Clarke 1999; Fitch et al. 2000), former studies have oversimplified its complexity. Both patterns of couples’ reactions and their complex pros and cons can be understood against the backdrop of the interviewees’ reports on their condition following the therapy. Their accounts indicate that by attributing the threat to such partners’ relationships mainly to patients’ loss of potency and libido, studies in the field (Tannock et al. 1989; da Silva et al. 1993; Herr et al. 1993; Heyman and Rosner 1996) have underestimated the significance of spouses’ loss of attraction to them due to their bodily feminization and the hot flushes they suffer from. Neither have former studies sufficiently attended to their loss of vigour, dwindling fighting spirit and reduced capacity to enjoy non-sexual activities. These side-effects imply the impairment of their general coping competence and of their ability to compensate for the sexual dysfunction by manifesting other masculine skills and sharing alternative interests with their spouses. The above difficulties clarify the limited effectiveness of the efforts made by some of the interviewees to pursue the pre-treatment relationships with their partners by means of their European Journal of Oncology Nursing 7 (2), 73-- 80
redefinition in terms of platonic love, the substitution of lost capacities for emphasis placed on others, or the maintenance of past role divisions within their families and even the sexual relations. Unlike the successful adoption of such strategies for coping with other lifecourse disruptive medical conditions (Kleinman 1988; Becker 1993; Frank 1995; Sutherland and Jensen 2000), it appears that their employment in the present case requires staged behaviour and spouses’ tacit agreement to avoid disclosure of their true feelings. The findings show that besides the burden entailed in the constant pretence, it may generate such misunderstandings as spouses’ expectations that the patients would experience sexual pleasure. It thus transpires that the relationship pattern which seemingly reflects better coping among the two that have been traced in this study constitutes itself an undertaking that is difficult to cope with. Since the relinquishing of pre-treatment relationships has been reported only by patients who had been rejected and humiliated by their spouses, this solution cannot be interpreted as a deliberate effort to contend with the difficulties. Yet the comfort that they have eventually found in the relaxed atmosphere at home suggests that they have come to terms with, and even positively reconstructed, the constraints imposed on their ties with their partners. Just like the resort to dramaturgical tactics, the reliance of this coping strategy merely on cognitive manipulations can be ascribed to patients’ limited capacity for taking practical steps to handle the difficulties. It is reasonable to assume, however, that had such spouses’ ties been modified in a joint decision that meets the needs of both sides, they could have represented an effective alternative to the attempts to maintain pre-treatment intimacy. Given the limited number of participants in this study and its reliance on patients’ accounts without exploring their spouses’ experiences, its findings still await corroboration. Furthermore, its being based on interviews carried out solely in one country calls for its replication in different cultural settings. However, it is reasonable to assume that the picture relevant to Israeli society represents the one generally prevailing in the Western world, because in both contexts negative attitudes towards impotence and gender-related classificatory transgressions are mitigated by social norms venerating commitment to a suffering spouse (Weiss 1995; Feigin et al. 1996; Becker 1997). This picture may thus provide a preliminary basis for understanding and integrating the contradictory data accumulated thus far on partners’ relationships following hormonal therapy. They also pinpoint the potential threats to such relationships, the constraints imposed on handling them and the disadvan-
IMPLICATIONS FOR ONCOLOGY NURSING Oncology nursing interventions aimed at preventing or resolving the difficulties described in this paper should be based on information provision, problem identification and proper counselling. As regards the educational needs, it appears that patients and spouses alike do not fully understand the nature of the hormonal therapy’s side-effects and its impact on the coping competence and capability to enjoy nonsexual activities. Adequate information provision may prevent patients’ efforts to undertake tasks that are beyond their capacity and partners’ fear that they are contagious or expectations that they would enjoy sexual relations. It can also mitigate the distress caused by the bodily feminization process and the hot flushes. Since some patients resort to pretence and others employ unobservable cognitive coping strategies, the tracing of tensions between them and their partners requires careful nursing assessment. The latter may benefit from experience already gained from the application of various biopsychosocial models for evaluating sexual difficulties faced by cancer patients and their spouses (Lamb and Woods 1981; Auchincloss 1991; Tan et al. 2002). However, the assessment should avoid generalized and clearcut evaluations that neglect the complexity of the relationships characterizing the couples discussed herein and the coping tactics that they adopt. For instance, the option of substituting sexual relationships by partners’ alternative enjoyable activities would be irrelevant to cases of patients’ severely reduced capacities for enjoyment. Neither should the assessment focus solely on sex-related problems, but rather encompass various aspects of the relationships, such as the sincerity prevailing between spouses and the roledivision within the family. Special attention needs to be paid to problems that are not generated by the treatment’s side-effects but rather by the strategies employed for coping with them. Spouses’ tendency to adopt such strategies on their own initiative points to their unawareness of available advisory services, whose counselling may improve the communication between them and supply them with information on alternative ways to maintain intimacy and on available
means of alleviating patients’ fatigue, hot flushes and low self-concept and body image. Nurses can play an important role in providing them with referral to psychologists, sexologists, marriage counsellors, alternative therapists and selfhelp groups. However, it is quite likely that such counsellors do not necessarily bear in mind the impairment of patients’ general coping capabilities. Training oncology nurses who specialize in the unique difficulties facing such patients and their spouses would thus contribute more effectively towards their solution. Full understanding of these difficulties requires the combination of problem identification interventions with follow-up studies. Empirical studies, too, are needed for refining the knowledge of their causes, nature and intensity. Among the issues that still await clarification are the congruity between patients and spouses conception of the difficulties and the latter’s dependence on the quality of pre-treatment relationships and on cancer-related versus treatment-related factors. Further oncology nursing research would allow the development of assessment tools aimed at tracing couples whose relationships are at risk and counselling programmes that would meet their differential needs.
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tages of strategies employed for this purpose, all of which would benefit from oncology nursing interventions. Since they nevertheless point to patients’ lasting coping competence, they hold promise that adequate guidance would allow couples who face such difficulties to contend with them more effectively.
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80 European Journal of Oncology Nursing implications for oncology nurses. Oncology Nursing Forum 27(8): 1255--1263 Frank AW (1995) The wounded storyteller: body, illness, and ethics. University of Chicago Press, Chicago Glaser B (1978) Theoretical sensitivity. Sociology Press, Mill Valey, CA Herr H, Kornblith A, Ofman U (1993) A comparison of the quality of life of patients with metastatic prostate cancer who received or did not receive hormonal therapy. Cancer 71(3) (Suppl.): 1143--1150 Heyman EN, Rosner TT (1996) Prostate cancer: An intimate view from patients and wives. Urologic Nursing 16(2): 37--44 Iversen P (2002) Antiandrogen monotherapy: indications and results. Urology 60(3A): 64--71 Kleinman A (1988) The illness narratives: suffering, healing, and the human condition. Basic Books, New York Kornblith AB, Herr HW, Ofman US, Scher HI, Holland JC (1994) Quality of life of patients with prostate cancer and their spouses: the value of a data base in clinical care. Cancer 73(11): 2791--2802 Lamb MA, Woods NF (1981) Sexuality and the cancer patient. Cancer Nursing 4(2): 137--144 Lavery JF, Clarke VA (1999) Prostate cancer: patients’ and spouses’ coping and marital adjustment. Psychology, Health and Medicine 4(3): 289--302 Miles MB, Huberman AM (1984) Qualitative data analysis: a sourcebook of new methods. Sage, Newbury Park, CA O’Rourke ME (1999) Narrowing the options: the process of deciding on prostate cancer treatment. Cancer Investigation 17: 349--359 Phillips C, Gary RE, Fitch MI, Labrecque M, Fergus K, Klotz, L (2000) Early postsurgery experience of prostate cancer patients and spouses. Cancer Practice 8(4): 165--171 Poole G, Poon C, Achille M, White K, Franz N, Jittler S, Watt K, Cox DN, Doll R (2001) Social support for
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patients with prostate cancer: the effect of support groups. Journal of Psychosocial Oncology 19(2): 1--16 Rolland JS (1994) In sickness and in health: the impact of illness on couples’ relationships. Journal of Marital and Family Therapy 20(4): 327--347 Spencer SM, Carver CS, Price AA (1998) Psychological and social factors in adaptation. In: Holland JC (Ed) Psycho-oncology. Oxford University Press, Oxford Steginga SK, Occhipinti S, Dunn J, Gardiner RA, Heathcote P, Yaxley J (2001) The supportive care needs of men with prostate cancer (2000). Psycho-Oncology 10(1): 66--75 Stern P (1980) Grounded theory methodology: its uses and processes. Image 12: 20--23 Strauss A, Corbin J (1990) Basics of qualitative research: grounded theory procedures and techniques. Sage, Newbury Park, CA Sutherland B, Jensen L (2000) Living with change: elderly women’s perceptions of having a myocardial infarction. Qualitative Health Research 10(5): 661--676 Tan G, Waldman K, Bostick R (2002) Psychosocial issues, sexuality, and cancer. Sexuality and Disability 20(4): 297--318 Tannock I, Gospodarowicz M, Meakin W, Panzarella T, Stewart L, Rider W (1989) Treatment of metastatic prostatic cancer with low-dose prednisone: evaluation of pain and quality of life as pragmatic indices of response. Journal of Clinical Oncology 7(5): 590--597 Taylor SJ, Bogdan R (1984) Introduction to qualitative research methods: the search for meanings, 2nd Edn. Wiley, New York Vaughn DJ (2000) Hormonal therapy for advanced prostate cancer (editorial). Annals of Internal Medicine 132(7): 584--585 Weiss M (1995) Fence sitters: parents’ reactions to sexual ambiguities in their newborn children. Semiotica 107(1/2): 33--50 Wilson H (1985) Research in nursing. Addison-Wesley, Menlo Park, CA
Keywords: prostate cancer, hormonal therapy, side-effects, spouses, coping, qualitative
Die Beziehung von Patienten mit fortgeschrittenem Prostatakrebs zu ihren Ehefrauen nach erfolgter Hormontherapie
Liora Navon, Lecturer, Department of Nursing, School of Health Professions, Sackler Faculty of Medicine, Tel Aviv University, Ramat Aviv, Tel Aviv 69978, Israel Tel.:+972 3 640 7157; Fax: +972 3 640 9496; E-mail: [email protected] Amira Morag, RN, MA, Oncology Clinical Nurse Specialist, Oncology Unit, Sheba Medical Centre, Tel Hashomer 52621, Israel Correspondence and offprint requests to: Liora Navon
Die vorliegende Studie untersucht bei Patienten mit fortgeschrittenem Prostatakrebs den nachteilig Einfluss, den die Nebenwirkungen einer Hormontherapie auf die Aufrechterhaltung ihrer ehelichen Beziehung haben, wie sie vor Beginn der Behandlung bestand. Sie befasst sich weiter mit der Frage, wie die Patienten mit den dabei auftretenden Schwierigkeiten fertig wurden. Schliesslich werden Folgerungen fuer notwendige Pflegemassnahmen in der Onkologie gezogen. ImVerlauf der Untersuchung wurdenTiefeninter views mit 15 israelischen Patienten durchgefuºhrt, die an Prostatakrebs erkrankt waren. Die gewonnenen Daten wurden mit Hilfe der konstantenVergleichsanalyse weiter verarbeitet. Die Ergebnisse belegen, dass sowohl unterstuetzendes Verhalten der Ehepartner als auch die Versuche der Patienten selbst, der Krankheit nicht nachzugeben, zu genereller Aufrechterhaltung der Beziehung fuehrten, wie sie vor Behandlungsbeginn bestanden hatte. Wenn umgekehrt ein Patient durch seinen Ehepartner Ablehnung erfuhr und demzufolge Resignation empfand, waren Stoerungen der ehelichen Beziehungen zu verzeichnen.Wo andererseits die Aufrechterhaltung der Partnerschaft nur vorgespiegelt wurde, folglich eine stete emotionale Belastung als Preis bezahlt werden musste, wurde die Unterbrechung der Beziehung von den Patienten letztlich als positiv aufgenommen. Diese Resultate wurden vor dem Hintergrund der Einschraenkungen analysiert, welche die Patienten auf Grund der Hormontherapie in Bezug darauf erfuhren, wie sie mit ihrer Situation im Allgemeinen zurecht kamen und wie sie sich an nichtsexuellen Aktivitaeten erfreuen konnten, Einsch raenkungen, die ihre Faehigkeiten zur Loesung ehelicher Probleme erheblich beeintraechtigten. Die Patienten wuºrden von speziellen Ausbildungsmassnahmen fuer das Pflegepersonal in der Onkologie profitieren, die sich auf die einzigartigen Schwierigkeiten richten, denen sie und ihre Partner ausgesetzt sind. Darueber hinaus kaemen ihnen gezielte Angebote an Information und Beratung durch das Pflegepersonal zugute.
European Journal of Oncology Nursing (2003) 7 (2), 73^ 80 & 2003 Elsevier Science Ltd. All rights reserved. doi:10.1016/S1462-3889(03)00022-X
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The paper analyses the adverse impact of the hormonal therapy’s side-effects on advanced prostate cancer patients’capacity for maintaining their pre-treatment spousal relationships, the pros and cons of their ways of coping with the diff|culties involved, and the implications of these issues for oncology nursing interventions. In-depth interviews were conducted with 15 Israeli prostate cancer patients, and the data were processed according to the constant comparative analysis method.The f|ndings show that partners’ supportive attitude and patients’ attempts to stage resilience led to pretreatment relationships’ maintenance, and that, accordingly, patients’ rejection by their partners and resignation to this diff|culty resulted in spousal ties’disruption. However, whereas the relationships’ maintenance came at the cost of burdensome constant pretence, their disruption was eventually reconstructed by the patients in positive terms. These f|ndings are analysed against the backdrop of the constraints imposed by the hormonal therapy on patients’ general coping competence and ability to enjoy non-sexual activities, which impair their capability to solve their marital problems more effectively. They would thus benef|t from training oncology nurses who specialize in the unique diff|culties facing them and their partners, and from oncology nursing interventions that focus on relevant information provision and counselling. & 2003 Elsevier Science Ltd. All rights reserved.
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Liora Navon, Amira Morag
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INTRODUCTION One of the most problematic psychosocial aspects of prostate cancer is its potential for jeopardizing patients’ intimacy with their spouses. This effect is commonly attributed to the life-threatening nature of the disease and its adverse impact on its sufferers’ vitality, sexuality and self-concept (Clark et al. 1997; Lavery and Clarke 1999; Phillips et al. 2000; Bokhour et al. 2001). Yet, although the intensity of these difficulties is severest among those with advanced-stage cancer who receive hormonal therapy (Kornblith et al. 1994; Fitch et al. 2000; Chapple and Ziebland 2002), only little is known about their relationships with their partners following the treatment. The present paper is aimed at analysing this issue and its implications for oncology nursing interventions. Patients with advanced prostate cancer may experience pain, fatigue, decreased mobility, constipation, scrotal oedema, urinary retention and psychological distress (Fitch et al. 2000). The hormonal therapy for the disease is palliative with the intent to cause transient tumour regression through androgen deprivation. Elimination of androgens can be achieved through bilateral orchidectomy or non-surgical treatment, consisting of exogenously administered luteinizing hormonereleasing hormone (LHRH) analogues and antiandrogens (Vaughn 2000; Iversen 2002). Depending on the specific type of therapy, sideeffects may include loss of libido, erectile dysfunction, gynecomastia, weight gain, female distribution of fat, loss of bodily hair, hot flushes and sweats, nausea, osteoporosis, decreased vitality and mood disturbances (Steginga et al. 2001; Iversen 2002). These side-effects may have an influence on patients’ ties with their partners beyond their likelihood to undergo changes due to the chronicity of the disease (see Rolland 1994) and the unique difficulties of coping with cancer (see Spencer et al. 1998). However, most of the data gathered thus far on this issue are incomplete, because of their reliance on studies focusing on patients’ general needs or on questionnaire surveys that do not fully reveal the subjects’ point of view. Even the few studies that have concentrated on marital relationships only rarely differentiated patients undergoing hormonal therapy from those untreated or receiving other treatments such as radiotherapy or radical prostatectomy. It is not surprising then that, as shown in their following brief summary, their findings are self-contradictory and difficult to explain. Most of the studies indicate that patients’ loss of libido, impotence and the resulting low European Journal of Oncology Nursing 7 (2), 73-- 80
masculine self-image lead to the irreversible deterioration of their relations with their partners (Tannock et al. 1989; da Silva et al. 1993; Herr et al. 1993; Heyman and Rosner 1996). Such patients reportedly fear that they are no longer capable of fulfilling their role as husbands and hence they feel threatened by their spouses’ expressions of affection (Clark et al. 1997; Lavery and Clarke 1999). Other findings, however, indicate that their failure to maintain intimacy does not stem from their sexual dysfunction but rather from their mood disturbances, low self-esteem or fear of rejection arising from the cancer experience (Kornblith et al. 1994; Lavery and Clarke 1999). Besides their incoherence, the analyses of such causal factors are marked by paucity of detailed information on their specific impact on the intimacy between spouses and by negligence of the unique bodily changes caused by the hormonal treatment. This probably results from patients’ preference to avoid painful discussions of the difficulties entailed in their disease. Their tendency to sidestep the problems and the consequent suppression of their partners’ willingness to talk them over are viewed by some authors as additional causes for marital tensions (Kornblith et al. 1994; Lavery and Clarke 1999). Such tensions are also ascribed to patients’ equation of intimacy with sexual relations, which hinders their spouses’ attempts to preserve it through alternative expressions of love and emotional closeness (Heyman and Rosner 1996; Lavery and Clarke 1999; O’Rourke 1999; Boehmer and Clark 2001). Interestingly enough, all the above analyses attribute the problems to the patients’ emotional state or behaviour whereas the spouses’ role in their creation is overlooked. Furthermore, some of the patients included in the cited works and the majority of other studies’ participants do not conform to the picture arising from these analyses. According to their accounts, following the disease’s diagnosis and treatment their intimacy with their spouses has been maintained or even reinforced. The improvement is reportedly reflected in the strengthening of partners’ mutual respect, support and feelings of closeness (Clark et al. 1997; Lavery and Clarke 1999; Fitch et al. 2000; Poole et al. 2001; Chapple and Ziebland 2002). Yet, similar to the therapy’s adverse consequences, the actual manifestations of such positive effects have not been thoroughly investigated. The meagre information available on this issue may explain why the contradictory evidence of disrupted and maintained/reinforced intimacy has not yet been explained beyond its attribution to diseases’ general potential to either create or
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Participants and setting The study, conducted in Israel, included 15 patients with prostate cancer who were receiving hormone therapy at an oncological outpatient clinic for a continuous period of 6 months to 3 years. Eight of them were treated with both LHRH agonists and antiandrogens, and the remaining participants -- with only one of these medications. Prior to the hormonal therapy, six underwent orchidectomy, and five radiotherapy. The participants’ average age was 70 years (ranging from 57 to 85 years), and their mean educational level was 12 years of schooling (ranging from 8 to 18 years). All of them were married or cohabited with a spouse, and all had children. Eight were working, while seven had retired before the diagnosis.
Data collection The research, conducted by means of in-depth interviews, was approved by the Institutional Review Board for the Protection of Human Subjects at the medical centre where the study was conducted. After being notified of their right to withdraw from the research and that the data gathered would be used solely for scientific purposes, the participants signed an informed consent form. All the interviews were performed by one of the authors, who is an oncology nurse specialist. They were carried out in the patient’s home during two sessions, each lasting, on average, 2 hours. The first interview questions were unstructured, allowing the subjects to describe the course of their illness and its physical, psychosocial and familial implications as they saw them. The remaining questions were more focused, concentrating on the pre-treatment daily life and spousal ties, the therapy’s side-effects, their impact on the general quality of life and specifically on spouses’ relationships, and the pros and cons of the strategies employed for coping with their implications. Because of the sensitive nature of the subjects discussed, the interviewees strongly objected to the suggestion that their accounts would be tape-recorded. They gave their consent, however, to a written record-
Data analysis The data were processed according to the constant comparative method of data analysis (Glaser 1978; Stern 1980; Wilson 1985). The interviews’ transcripts were coded by the two authors separately, and in the few cases of disagreement, a discussion was held to reach consensus (Miles and Huberman 1984). The coding process included repeated reading of the interviews’ transcripts, in-depth analysis of the identified categories and themes, and their interpretation on the basis of their comparison to relevant literature (Strauss and Corbin 1990). The sampling was terminated after the emerging theoretical categories were considered to be saturated. The analysis yielded two main patterns of relationships between spouses, representing the disruption versus maintenance of those preceding the hormonal therapy. Examination of the side-effects’ impact marked in each, and the strategies adopted for coping with it, unexpectedly revealed that each of the patterns was described by the very same patients as having both advantages and disadvantages. These ambiguities, their interpretation and their clinical implications are presented below.
RESEARCH FINDINGS Spouses’ relationships before the treatment The research participants reported that before receiving the hormonal therapy their relationships with their spouses had been satisfactory or, at the least, normal and devoid of any particular problems, apart from ‘the usual arguments that happen in all families’. They described their closeness with their partners and their enjoyment in travelling together and attending social and family events. Even those whose wives had asked to cease sexual relations due to advanced age informed that their close relationships had not been affected, since masturbation and sexual fantasies provided them with a satisfactory substitute. The other interviewees regarded the sexual relations with their partners as their main means of achieving intimacy with them and as the major source of pleasure in their lives. For example: We used to have good times together and travel abroad a lot, but I felt the strongest emotional intimacy of all when my wife and I had sexual relations. We were like a pair of turtledoves. Throughout the day, all I would think about was the night ahead. I’d come home from work early, and get ready for what we would share later that European Journal of Oncology Nursing 7 (2), 73-- 80
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RESEARCH METHODS
ing, and hence as full and as accurate notes as possible of their own words were taken during the interview sessions (Taylor and Bogdan 1984).
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ameliorate tensions between spouses (Kornblith et al. 1994; Fitch et al. 2000). The present paper attempts to shed light on this unclear picture, on the basis of patients’ detailed accounts that have provided an opportunity to elaborate the understanding of the changes that their ties with their partners undergo following the hormonal treatment.
76 European Journal of Oncology Nursing night. Sex gives a person so much, it nurtures companionship, endeavours, and success. Even if a man doesn’t have good sex, he can still dream and fantasize about sex that will never happen.
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Another aspect of the pre-treatment relationships that the patients enlarged upon was their role as the family head. They identified successful performance of this role with the manifestation of qualities they believed to be masculine, such as leadership, determination, uncompromisingness and a propensity to protect the weak, to take responsibility and to be achievementoriented. All of them maintained that before they received hormonal treatment, it was these qualities that had helped them to perform domestic tasks requiring physical and mental strength, and to bolster the family’s economic status, thereby winning their spouses’ and children’s esteem. In this context, one of them related: My wife knew she always had someone to depend on. A man has to be serious and responsible, because he must provide a livelihood for his family. Being a man means being a rock, taking charge over women, protecting them, and never shirking responsibility. At home, I used to do everything, I was the one in control. I took care of everyone, and my wife and children respected me as a result.
Patients’condition following the treatment Once their illness was diagnosed, the patients assumed that their ‘masculine’ skills would help them to recuperate and return to their former tranquil routine. Those hopes were dashed when, following the hormonal therapy, they realized they had become passive and lacked both energy and the capacities they identified with their masculinity. Their surprise at the changes that their personality underwent were coupled with the appalling understanding that the treatment had stripped them not only of their sexual pleasure, their erotic dreams and fantasies, but of their ability to enjoy non-sexual activities as well. At the same time, as the following quotation shows, their longing to be loved remained unabated as did their yearnings for the days when they experienced sexual thrills. This treatment is like a tranquillizer. It diminishes the sexual urge, but not the longing to be loved. Initially I still hoped I could at least fantasize about sex, but I lost my optimism when I understood that everything, even the erotic dreams, had vanished. Ever since I became sexually inactive, I don’t feel like doing anything. I’ve become passive. All of a sudden, my chief masculine quality -- my fighting spirit -- simply disappeared. I don’t understand why this is, but I’m no longer thrilled, not even by beautiful sights or experiences I have. For instance, I still go abroad with my wife, but it’s only for her sake, because I don’t enjoy anything I see there. European Journal of Oncology Nursing 7 (2), 73-- 80
The patients’ difficulty in facing these changes was compounded by their feelings of self-disgust and confusion generated by the hot flushes and the feminization of their bodies. All reported that they avoided exposing their bodies to strangers, trying to keep their illness secret. For example: Only my wife knows about the illness. I dress in a way that conceals everything, because even I can’t bear to see what I look like. Even now I can’t stand in front of the mirror naked. That’s not a man. My chest has grown, my testicles and penis have shrunk. Since the treatment, I also suffer from hot flushes, like menopausal women.
Intimacy’s disruption following the treatment Eight interviewees reported that the changes in their personality and bodily appearance had created a physical and emotional distance between them and their spouses. According to their accounts, due to the disgust evoked by the sight of their bodies, their partners refused to have any physical contact with them, and some even feared that their illness was contagious. Moreover, without consulting them, the spouses took over domestic roles that they had previously assumed, treated them slightingly, and thus diminished their worth in their children’s eyes. The following quotation clarifies why such reactions and quarrels over the need to open windows that were sparked by the hot flushes eventually spurred the interviewees to sleep in a room of their own. The love we shared is over. My wife was afraid that my illness would infect her, and refused any physical contact with me. I became repugnant to her. Once I no longer satisfied her in bed, she started answering back and doing as she pleased. Even the children began keeping their distance from me. Whenever I had to open a window because of the hot flushes, my wife said I was making her ill. Things quietened down at home only when I moved into the living room.
Such reactions on their spouses’ part kindled feelings of disappointment and humiliation among the patients, and aroused their suspicion towards the sincerity and loyalty of other relatives and friends. They did, however, admit that they themselves contributed to the creation of the situation they encountered. They noted that following the therapy, they had stopped being useful at home, made no attempts to prevent their diminished status within the family, and could not muster the mental powers necessary to improve relationships with their spouses. As shown below, some justified their behaviour by maintaining that a man lacking sexual capabilities is worthless and hence not entitled to make any demands on his wife. My wife’s attitude made me feel useless. As a result, I lost faith in people. I distrust everyone, and her
Relationships with spouses 77
Despite the friction between me and my wife, we no longer quarrel with each other. She is now relieved because I can’t have sexual relations with her, and this consoles me a little for the major damage I’ve suffered. I’m glad that I’ve come out of this whole business a more considerate man. Thinking positively has made me calmer. Our daughter often wonders how come our relationship’s improved, and I smile inwardly and think, ‘‘What would happen if she knew the reason?’’
Intimacy’s maintenance following the treatment In utter contrast to the interviewees described thus far, the seven other research participants enjoyed their spouses’ care and understanding. This supportive attitude was expressed through displays of affections, concern about the patients’ health, time devoted to discussing their fears and hopes, and their encouragement to participate in such joint leisure activities as cooking meals or reading books together. Other means of preserving the pre-treatment relationship patterns included leaving spouses’ division of roles unchanged, and continuing to consult the patients on financial and domestic issues. As the following quotation demonstrates, some of the partners encouraged the interviewees to have non-coital sex with them, and even to try and experience sexual stimulation. From the very start of the therapy, my wife took care of me. She is very considerate, and tries to demonstrate her love for me. She always suggests, ‘‘Even though you can’t have sex with me, hug me, kiss and stroke me, it may lead to something, who knowsy’’. We spend a lot of time together, cooking, and enjoying each other’s company. She
Just like those who contributed to intimacy’s disruption, these patients, too, played an active role in the attempt to keep the pre-treatment ties unchanged. They cooperated in the sexual activities initiated by their partners, and made efforts to project more understanding and friendliness than they had before receiving the hormonal therapy. The majority also tried to prove to their spouses that they were still capable of making the right financial decisions in the household, of supporting the family and of caring for the children. For example, one of them related: I’m still supporting my wife, and I take care of all her needs. I let her see that I’m the same responsible, reliable man, and that in fact nothing has changed. In our relationship, I’ve started placing more emphasis on other aspects of intimacy, like companionship, understanding and love in the platonic sense of the word. At the start of the treatment, I was deeply involved in my own problems, but now I pay far more attention to my wife. Even in bed, I keep on playing our game, to give her satisfaction, and I think she’s enjoying herself.
According to the interviewees, although these relationship patterns, in comparison to pretreatment intimacy, were characterized by more intense emotional companionship, they had to pay a heavy price for them. As time passed, their need to stage intimacy in and out of bed became increasingly burdensome and even evoked among some of them disgust and self-pity. They also reported that their attempts to maintain their status in the family through the performance of ‘masculine’ roles at home were marked by lack of enthusiasm and interest. The following quotation shows that the need to conceal these feelings, too, turned into an onerous obligation. I even lost interest in handling the family finances. I’m still taking care of the family’s future, but if I could have my way, I’d prefer to hand over the whole issue to someone else. The intimate relationship with my wife continues, even though I don’t enjoy it and actually dislike it. I just pretend I’m enjoying it. I let her hug and kiss me, but I realize it’s pathetic, and it makes me feel angry and sorry for myself. I believe she simply pities me, we both know there’s nothing behind it. At first, our conversations about all these emotions were very helpful, but then I stopped talking because I realized it was important for her to continue this way. I have to bear the difficulties silently, I simply have no other choice.
DISCUSSION The findings show that the impact of the hormonal therapy’s side-effects on patients’ relationships with their spouses is more wideEuropean Journal of Oncology Nursing 7 (2), 73-- 80
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It transpires, however, that once these patients moved into separate bedrooms and the quarrels with their spouses abated, they began to attribute advantages to the physical distance, such as contribution to defusing pre-treatment tensions. They described how the extinguishing of their sexual needs had imbued them with calm and liberated them from the guilt feelings they had harboured previously, when their sexual demands were an imposition on their partners. As a result, they felt they had become more relaxed and considerate individuals, and some even found consolation for the loss of potency in the relief their spouses gained from that loss. As illustrated below, such positive attitude to the changes that the relationships had undergone helped the interviewees to conceal them from friends and family.
shows me that I’m still in charge of money matters; I think that, in this way, she’s trying to prove to me that I’m still the man of the house.
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too. I can’t ask or demand anything of her because I am no longer a man. After the recovery, I should have reclaimed my status as her husband, should have put an end to the separation she’d enforced on me, but I just couldn’t do it. I’ve stopped arguing about issues that were once important to me, like her attitude towards me. At home, I’m superfluous and irrelevant.
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ranging than that documented in the literature. It may encompass spouses’ daily, sexual and leisure activities, the emotional closeness, sincerity and patterns of communication between them, the roles and relative status of each within the family, and even their willingness to share the same bedroom. Yet, adverse changes in these domains have been experienced only by some research participants whereas others have managed to maintain intimacy with their partners. The lack of variation in the pre-treatment relationships between the interviewees and their spouses suggests that the clue to this difference should be sought in post-treatment factors. The patients’ accounts reveal in this regard that contrary to the picture arising from the literature (Kornblith et al. 1994; Heyman and Rosner 1996; Boehmer and Clark 2001), not only their own reaction to the difficulties entailed in their physical and mental condition but that of their partners, too, determine the chances of intimacy’s maintenance. Overt rejection on the part of spouses and patients’ subsequent resignation to the difficulties have worsened their relationships, but such deterioration has been prevented in cases of supportive spouses and patients’ efforts to stage resilience. However, it has been found that in the long run spouses may benefit from pulling away from each other whereas the maintenance of intimacy among those who cling to each other may come at a significant price. This implies that by depicting the process that such relationships undergo merely in terms of deterioration versus maintenance/ improvement (Clark et al. 1997; Lavery and Clarke 1999; Fitch et al. 2000), former studies have oversimplified its complexity. Both patterns of couples’ reactions and their complex pros and cons can be understood against the backdrop of the interviewees’ reports on their condition following the therapy. Their accounts indicate that by attributing the threat to such partners’ relationships mainly to patients’ loss of potency and libido, studies in the field (Tannock et al. 1989; da Silva et al. 1993; Herr et al. 1993; Heyman and Rosner 1996) have underestimated the significance of spouses’ loss of attraction to them due to their bodily feminization and the hot flushes they suffer from. Neither have former studies sufficiently attended to their loss of vigour, dwindling fighting spirit and reduced capacity to enjoy non-sexual activities. These side-effects imply the impairment of their general coping competence and of their ability to compensate for the sexual dysfunction by manifesting other masculine skills and sharing alternative interests with their spouses. The above difficulties clarify the limited effectiveness of the efforts made by some of the interviewees to pursue the pre-treatment relationships with their partners by means of their European Journal of Oncology Nursing 7 (2), 73-- 80
redefinition in terms of platonic love, the substitution of lost capacities for emphasis placed on others, or the maintenance of past role divisions within their families and even the sexual relations. Unlike the successful adoption of such strategies for coping with other lifecourse disruptive medical conditions (Kleinman 1988; Becker 1993; Frank 1995; Sutherland and Jensen 2000), it appears that their employment in the present case requires staged behaviour and spouses’ tacit agreement to avoid disclosure of their true feelings. The findings show that besides the burden entailed in the constant pretence, it may generate such misunderstandings as spouses’ expectations that the patients would experience sexual pleasure. It thus transpires that the relationship pattern which seemingly reflects better coping among the two that have been traced in this study constitutes itself an undertaking that is difficult to cope with. Since the relinquishing of pre-treatment relationships has been reported only by patients who had been rejected and humiliated by their spouses, this solution cannot be interpreted as a deliberate effort to contend with the difficulties. Yet the comfort that they have eventually found in the relaxed atmosphere at home suggests that they have come to terms with, and even positively reconstructed, the constraints imposed on their ties with their partners. Just like the resort to dramaturgical tactics, the reliance of this coping strategy merely on cognitive manipulations can be ascribed to patients’ limited capacity for taking practical steps to handle the difficulties. It is reasonable to assume, however, that had such spouses’ ties been modified in a joint decision that meets the needs of both sides, they could have represented an effective alternative to the attempts to maintain pre-treatment intimacy. Given the limited number of participants in this study and its reliance on patients’ accounts without exploring their spouses’ experiences, its findings still await corroboration. Furthermore, its being based on interviews carried out solely in one country calls for its replication in different cultural settings. However, it is reasonable to assume that the picture relevant to Israeli society represents the one generally prevailing in the Western world, because in both contexts negative attitudes towards impotence and gender-related classificatory transgressions are mitigated by social norms venerating commitment to a suffering spouse (Weiss 1995; Feigin et al. 1996; Becker 1997). This picture may thus provide a preliminary basis for understanding and integrating the contradictory data accumulated thus far on partners’ relationships following hormonal therapy. They also pinpoint the potential threats to such relationships, the constraints imposed on handling them and the disadvan-
IMPLICATIONS FOR ONCOLOGY NURSING Oncology nursing interventions aimed at preventing or resolving the difficulties described in this paper should be based on information provision, problem identification and proper counselling. As regards the educational needs, it appears that patients and spouses alike do not fully understand the nature of the hormonal therapy’s side-effects and its impact on the coping competence and capability to enjoy nonsexual activities. Adequate information provision may prevent patients’ efforts to undertake tasks that are beyond their capacity and partners’ fear that they are contagious or expectations that they would enjoy sexual relations. It can also mitigate the distress caused by the bodily feminization process and the hot flushes. Since some patients resort to pretence and others employ unobservable cognitive coping strategies, the tracing of tensions between them and their partners requires careful nursing assessment. The latter may benefit from experience already gained from the application of various biopsychosocial models for evaluating sexual difficulties faced by cancer patients and their spouses (Lamb and Woods 1981; Auchincloss 1991; Tan et al. 2002). However, the assessment should avoid generalized and clearcut evaluations that neglect the complexity of the relationships characterizing the couples discussed herein and the coping tactics that they adopt. For instance, the option of substituting sexual relationships by partners’ alternative enjoyable activities would be irrelevant to cases of patients’ severely reduced capacities for enjoyment. Neither should the assessment focus solely on sex-related problems, but rather encompass various aspects of the relationships, such as the sincerity prevailing between spouses and the roledivision within the family. Special attention needs to be paid to problems that are not generated by the treatment’s side-effects but rather by the strategies employed for coping with them. Spouses’ tendency to adopt such strategies on their own initiative points to their unawareness of available advisory services, whose counselling may improve the communication between them and supply them with information on alternative ways to maintain intimacy and on available
means of alleviating patients’ fatigue, hot flushes and low self-concept and body image. Nurses can play an important role in providing them with referral to psychologists, sexologists, marriage counsellors, alternative therapists and selfhelp groups. However, it is quite likely that such counsellors do not necessarily bear in mind the impairment of patients’ general coping capabilities. Training oncology nurses who specialize in the unique difficulties facing such patients and their spouses would thus contribute more effectively towards their solution. Full understanding of these difficulties requires the combination of problem identification interventions with follow-up studies. Empirical studies, too, are needed for refining the knowledge of their causes, nature and intensity. Among the issues that still await clarification are the congruity between patients and spouses conception of the difficulties and the latter’s dependence on the quality of pre-treatment relationships and on cancer-related versus treatment-related factors. Further oncology nursing research would allow the development of assessment tools aimed at tracing couples whose relationships are at risk and counselling programmes that would meet their differential needs.
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