PSYCHO-ONCOLOGY Psycho-Oncology 15: 1055–1064 (2006) Published online 6 April 2006 in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/pon.1036 CORE CONCERNS OF COUPLES LIVING WITH EARLY STAGE BREAST CANCER MARY ELLEN SHANDSa,*, FRANCES MARCUS LEWISa,b, JANET SINSHEIMERa and BARBARA B. COCHRANEa,b a University of Washington School of Nursing, Seattle, WA, USA b Fred Hutchinson Cancer Research Center, Seattle, WA, USA SUMMARY Study objectives: Although clinicians and scientists have a growing awareness of breast cancer as a couple’s joint experience, no one has studied the concerns couples choose to address with a professional coach to better manage the impact of the cancer. The purpose of the current study was to describe illness-related concerns couples worked on together with masters-educated professional coaches during the first eleven months of the wife’s treatment for early stage breast cancer. Setting and participants: Intervention sessions were conducted with twenty-nine couples in their homes in the Pacific Northwest. Design: Data were obtained from single occasion case intensive interviews with couples. Main results: Inductive coding of the audiorecorded intervention sessions yielded four domains of core concerns: dealing with tension in the relationship; needing to be together as a couple; wondering about the children; and managing the threat of breast cancer. Conclusion: Over half the couples chose to address and do something about the stress, tension and dissatisfaction they were feeling in their relationship that each attributed to the breast cancer. Future family-focused cancer care needs to include services that assist couples to address these core concerns. Copyright # 2006 John Wiley & Sons, Ltd. KEY WORDS: breast cancer; couples; marital tension; cancer; family; children; oncology INTRODUCTION Breast cancer causes substantial distress and disruption in the lives of both women and their partners (Badger et al., 1999; Badger et al., 2001; Baider et al., 2004; Ben-Zur, 2001; Compas et al., 1994; Goldberg et al., 1992; Jamison et al., 1978; Kilpatrick et al., 1998; Lewis and Hammond, 1996; Lewis et al., 1989; Longman et al., 1996; Loveys and Klaich, 1991; Ptacek et al., 1994; Sabo et al., 1986; Samms, 1999; Schag et al., 1993; Spiegel, 1997; Wellisch et al., 1978; Wilson and Morse, 1991; Zahlis and Shands, 1991). In seminal research on patients and their spouses, Northouse and Swain (1987) measured the *Correspondence to: University of Washington, Family and Child Nursing, School of Nursing, Box 357262, Seattle, WA 98195-7262, USA. E-mail: mesh@u.washington.edu Copyright # 2006 John Wiley & Sons, Ltd. psychosocial adjustment of 50 newly diagnosed breast cancer patients and their partners a few days after surgery and 30 days later. The partners’ adjustment did not differ significantly from the patients’ level of mood and symptom distress. Furthermore, both patients and partners reported levels of distress significantly above the level for the normal population. While there was dramatic improvement in the levels of mood [more joy, contentment and vigor] for both patients and partners at the 2 time points, there was no significant change in their level of distress [depression, hostility and somatic complaints]. More recent research by Northouse’s team compared couples’ adjustment to benign breast disease and malignant disease at time of diagnosis and at 60 days and one-year post diagnosis (Northouse et al., 1998). When compared to the benign group, couples in the malignant group reported significantly higher levels of emotional distress and role Received 15 April 2005 Accepted 10 January 2006 1056 M.E. SHANDS ET AL. problems. These scores remained high throughout the first year. Additionally, the measure of marital satisfaction and household functioning showed that couples in the malignant group reported greater decreases in marital satisfaction and family functioning compared to couples in the benign group during the first year after diagnosis. These results corroborate findings from an earlier study of couples in which greater numbers of illness-related demands experienced by either partner predicted more negative mood and poorer marital adjustment (Lewis et al., 1993). In order to study differences in the fulfilment of emotional and interactional needs and emotional and physical adjustment outcomes between breast cancer patients and their partners, Hoskins (1995) obtained data at 7–10 days; 1, 2, 3, and 6 months; and 1 year post-surgery. Based on standardized instruments, at the 7–10 day point, partners reported greater dissatisfaction than patients in having both their interactional and emotional needs met. Interactional needs included open communication about feelings, shared needs for companionship, agreement with others thinking, indication of sensitivity, insightfulness and consideration of feelings; emotional needs included expressions of affection, emotional security and stability in the relationship and recognition and appreciation. At each subsequent data collection point, this pattern was reversed with patients indicating greater dissatisfaction. In addition to elevated distress, disruption and marital dissatisfaction, qualitative studies have documented the issues and concerns couples experience with breast cancer. Gotay’s seminal study (1984) involved interviews of women with early stage cervical cancer or pre-cancer and their partners. She also interviewed women with advanced breast or gynecological cancer and their partners. For all groups, fear of the cancer diagnosis, disease progression and recurrence were the most common concerns. Men in both the early and advanced stage groups were more likely than the women to be concerned about her dying. Difficulty coping with the emotional aspects of the illness was also commonly cited in all four groups. Lichtman et al. (1987) interviewed 78 breast cancer patients and their significant others to assess perceptions of social support following the diagnosis of cancer. Twenty-five percent of the sample reported strained communication as a common problem, particularly when the patient felt that her fears were discounted by those close to Copyright # 2006 John Wiley & Sons, Ltd. her, especially her spouse. Hilton (1993) interviewed 12 families about the issues, problems and challenges at five times in the breast cancer experience: at the initial time of diagnosis, 2–3 weeks, 2–3 months, 7–8 months and 12 months after surgery. One of the issues related to communication problems, including one person wanting to talk about the cancer or its effects on family members while others did not see the need. A few women wanted their partners to be more supportive and reported having ‘lingering feelings’ about the lack of support. A more in-depth study of family communication patterns in coping with early stage breast cancer (Hilton, 1994) involved triangulating qualitative interview data from 41 couples with data obtained from standardized measures of couple communication and anxiety. Categories of couple communication patterns about fears, doubts and emotional issues were identified based on the congruence of each partner’s views about the importance of talking about these issues. The less similar the couples’ views about the importance of talking, the less physically affectionate they were and the greater marital discord they reported. Discrepant views were problematic for couples when not talking was perceived as not caring. Communication was also impeded when assumptions were not validated, information was withheld or unclearly expressed, and when the receiver was unreceptive. Interview data from Lewis and Deal’s (1995) study of fifteen couples living with recurrent early stage breast cancer indicated that partners and wives held divergent views about discussing negative or sad feelings. Women sometimes wanted to discuss the possibility and implications of death while their partners wanted to avoid such topics. Many of the couples spoke about the complex dynamic that surrounded the woman’s expression of feelings when she felt that her spouse did not understand her feelings. On standardized measures of adjustment, nine couples [60%] had one or both members who scored in the clinical range of depressed mood or marital adjustment. Zunkel (2002) analyzed interview data obtained from 15 couples experiencing early stage breast cancer. Women’s CES-D scores were stratified into three ranges: below 10, 10–15, and 16 or higher; five women were purposefully sampled within each range. Partners’ scores on depressed mood were in the normal range [less than 16]. Results revealed two distinct processes that characterized the couples’ coping with the breast cancer: an Psycho-Oncology 15: 1055–1064 (2006) COUPLES LIVING WITH EARLY STAGE BREAST CANCER ‘acknowledging process’ and a ‘moderating or minimizing process’ (Zunkel, 2002). The ‘acknowledging process’ allowed for open communication between the partners in which neither placed limits on each other’s responses to the cancer. This process was satisfying for the women and it also gave their spouses a sense of being helpful. When the couples used a ‘moderating or minimizing process,’ it seemed to minimize the intrusion of the cancer into their lives and limit the thoughts or emotions associated with the cancer. Zunkel (2002) argued that this moderating or minimizing process represented a lack of understanding or discomfort with acknowledging each other’s emotions about the breast cancer. Couples’ chosen concerns to work with the professional coach Despite over 20 years of published research on the impact of cancer on the couple, no study has documented the illness-related concerns couples choose to work on with a professional coach during the diagnosis and treatment phase of early stage breast cancer. It is one thing to have an illness-related concern; it is another thing to want help managing the concern. A professional coach is operationally defined as a Masters-educated clinician who is specially trained to do professional coaching; see Lewis and Zahlis (1997) for a detailed description of professional coaching. A ‘couple coached concern’ is defined as a breast cancer related concern that was initially identified by the woman or her spouse and then chosen by the couple as a concern to work on with the professional coach. METHODS Study sample Couples in the current study were consecutively accrued couples who were randomized into the intervention group of the Family Home Visitation Program, a 2-group clinical trial (Lewis, 1998 ONF paper; Lewis and Hammond, Under review). Analyses in the current study are the concerns identified by 29 couples whose concern met the criteria for a ‘couple coached concern.’ Copyright # 2006 John Wiley & Sons, Ltd. 1057 Couples who did not identify a ‘couple coached concern’ (n ¼ 44) were excluded from the current analyses. Post hoc analysis of the transcribed interviews of these 44 couples revealed that 31 couples claimed they had no couple-related concern on which they wanted to work. Another five couples did not want to work on a concern together even if one member identified it as a concern. Four couples identified individual-level, not couplefocused concerns. Finally, four couples identified couple concerns that were not related to the breast cancer. Study participants were recruited from a major city in the Pacific Northwest through intermediaries in clinics and physicians offices as well as through newspaper advertisements (Motzer et al., 1997). Couples were eligible for the larger clinical trial if the woman had been diagnosed with early stage [Stage 0, 1, or 2] breast cancer within the previous eleven months. After signed informed consent, each intervention session was taperecorded and transcribed verbatim by a trained transcriptionist. Sample description The average length of time since diagnosis for the study sample [n ¼ 29] was 5.7 months [S.D. 2.62] but ranged from 2 to 11 months. Sixty-two percent of the women [n ¼ 18] were diagnosed between 1 and 6 months; eighty-three percent [n ¼ 24] were diagnosed between 1 and 8 months and seventeen percent [n ¼ 5] were diagnosed between 9 and 11 months prior to entering the study. Eleven women had lumpectomies with nodal dissection and 18 had mastectomies. Twenty-two of the women were either currently receiving chemotherapy or had received it within the previous six months. Thirteen women were either currently receiving radiation treatment or had received it within the previous five months. Eleven women were currently receiving chemotherapy and radiation or had received it within the previous 5.5 months. Women averaged 41 years of age [S.D. 5.98] and ranged in age from 29 to 49 years. The average length of the couples’ relationship was 15 years [range 3–24 years, median 15 years]. The number of children living at home ranged from 0 to 3 [mean of 2 children], and they ranged in age from birth to 21 years [mean of 9 years]. Twenty-nine children were male [52.7%] and 26 children were Psycho-Oncology 15: 1055–1064 (2006) 1058 M.E. SHANDS ET AL. Table 1. Demographic characteristics of the sample [n ¼ 29] Woman Characteristics Education Some high school High school graduate Some college College graduate Masters degree Doctoral degree Ethnicity Caucasian Other race/ethnicity Employment status Employed Not employed Partner Number % Number % 1 5 12 8 3 0 3.4 17.2 41.4 27.6 10.3 0 0 3 14 6 5 1 0 10.3 48.3 20.7 17.2 3.4 27 2 93.1 6.9 27 2 93.1 6.9 19 10 65.5 34.5 28 1 96.6 3.4 Table 2. Family income [n ¼ 28a] Annual income level Number % Under $3500 30 000–34 999 35 000–39 999 40 000–49 999 50 000–59 999 60 000–69 999 Over 70 000 1 1 2 6 6 5 7 3.6 3.6 7.1 21.4 21.4 17.9 25.0 a Data were available for 28 families. female [47.3%]. Tables 1 and 2 contain additional demographic characteristics of the participants. Study procedures Each couple participated in a 1.5–2.0 hour athome intervention session that consisted of three parts. During the first part, the couple met together with two professional coaches and were asked about the impact of the breast cancer on them as a couple and any concerns they had as a couple about the breast cancer. In the second part, each spouse and diagnosed woman spent time alone with one of the professional coaches to talk about how the illness had impacted him or her individually. The third and final part of the intervention session reconvened the couple together. One of the two professional coaches acted as the senior coach; the second coach assisted the senior coach. The Copyright # 2006 John Wiley & Sons, Ltd. senior professional coach began the final part of the intervention by saying to the couple: You’ve had time together and time individually talking with us about the breast cancer. In the course of these discussions some things may have been clarified or crystallized that you’d like to work on or talk more about. What would you like to spend some more time talking about further? After the woman and her spouse were given the opportunity to identify their issues or concerns and invited to further elaborate so that the issues or concerns were clear to them and the coach (Lewis and Zahlis, 1997), the couple chose one concern to work on with the coaches. Data analytic procedures Data for the current analyses are the audiotape recordings of the 3rd and final part of the intervention session. Audiotaped recordings of this sequence were transcribed and content analyzed using inductive coding methods described by Krippendorf (1980), Spradley (1980) and extended by Lewis and Deal (1995). Verbatim statements made by each member of the couple constituted the units of analysis. Statements were organized and grouped into categories according to their similarities, and each category was labeled and defined. Definitions included rules of inclusion for that category in order to prevent overlap among categories. Verbatim category labels using the words of the participants were used to label the categories whenever possible. Finally, categories were further organized into larger conceptual domains according to their analytic similarities. See Figure 1 for a sample coding scheme. Quality monitoring checks were used to minimize coder bias and to ensure the trustworthiness of results. Two coders initially and independently unitized the verbatim statements for all transcripts. Categories and their definitions were next constructed through consensual agreement between the coders. Disagreements were resolved by referring back to the original transcript or by refining the definition of the category. RESULTS Analyses yielded 12 categories of couple concerns. The categories were organized into four conceptual domains. See Table 3. Psycho-Oncology 15: 1055–1064 (2006) 1059 COUPLES LIVING WITH EARLY STAGE BREAST CANCER Domain Dealing with Tension in the Relationship Category Category Category Wanting Him to Understand Not Knowing How to Respond to Her Needing to Know What It’s Like to Touch Verbatim Verbatim Verbatim I feel like I have his support behind me…but that I don’t have somebody next to me, going with me… I miss that. I want that. I want interest, which to me shows concern… I want input. This is not just me, this is us. Cause what affects me is going to affect him. So I want some validation, some feedback. I know the scar bothers her, and when I tell her it doesn’t bother me, I don’t feel like I really convince her. And the topic will just be dropped. I feel like I need to say something more to make her feel better or make her believe me, but I don’t know what to say, so I just quit talking and it just ends. I guess we don’t talk about our feelings. I want to know what you’re going through as far as touching (breast). Are you ever going to be able to touch me? …I don’t even know if you’re aware of it, but when you come up and hug me, you pull away from that side. I want it clear…if you don’t want to touch it. I’ve asked him to communicate to me what he’s feeling, what it’s like. I want to know if it’s foreign to touch. It’s like you touch every other part of my body (except my breast), and it makes me feel repulsive to you. Figure 1. Sample coding scheme. Dealing with tension in the relationship Forty-five percent [n ¼ 13] of the couples chose to work on tension in their relationship they explicitly attributed to the breast cancer. Men spoke of their frustration and irritation at not knowing what to say or do to help their wives. Wives claimed they wanted their spouses to respond differently to indicate understanding of their experience. Categories in this domain included not knowing how to respond to her [n ¼ 7]; wanting him to understand [n ¼ 5]; and needing to know what it’s like to touch [n ¼ 1]. Not knowing how to respond to her. When a man did not know how to respond to his wife he spoke of feeling frustrated at not doing or saying the right thing, including not knowing what his wife would find supportive. I’m not sure sometimes how I should react. You wake up and hear her and she may be crying and I Copyright # 2006 John Wiley & Sons, Ltd. think to myself, ‘Should I roll over and hug her? Should I leave her alone? Does she want to be left alone?’ It’s hard to know. I want to do the right thing. I want to act properly. Not knowing how to respond included the spouse not knowing how to communicate his feelings to the woman about physical changes in her body. I know the scar bothers her, and when I tell her it doesn’t bother me, I don’t really feel like I convince her. . .I feel like I need to say something more to make her feel better or to make her believe me, but I don’t know what to say, so I just quit talking. The men expressed irritation when they felt their wives were not giving them information or clues about what they wanted and needed from them: ‘I told her to tell me. . .talk with me. I don’t know what you want [if you don’t tell me].’ Psycho-Oncology 15: 1055–1064 (2006) 1060 M.E. SHANDS ET AL. Table 3. Conceptual domains and categories of core concerns [n ¼ 29] Domains and categories Number of couples Percentage Dealing with tension in the relationship Not knowing how to respond to her Wanting him to understand Needing to know what it’s like to touch Needing to be together as a couple Needing time together without the children Needing to do more fun things Tired of listening to her worries Wondering about the children Trying to read the impact Worrying about the lingering effects Not knowing how to respond Managing the threat of breast cancer Preventing a recurrence Fearing recurrence Needing assistance in seeking medical information 13 7 5 1 6 4 1 1 5a 2 2 3 5 3 1 1 45 24 17 3 21 14 3 3 17 7 7 10 17 10 3 3 a Five couples discussed issues related to this domain. Couples in this domain offered data that fit into more than one category. Wanting him to understand. Women described different ways they wanted their spouses to indicate understanding of what it was like to have breast cancer. They did not just want words from their spouses, they wanted changes in their spouses’ behavior. One woman asked her spouse to refrain from telling her ‘everything’s going to be okay,’ and instead just hold her when she cried. She said to him, ‘I have times when I’m depressed or sad or just weepy, and I feel like I have to hide it from you. If I just start crying, that’s okay and I need to do that.’ Needing to know what it’s like to touch. The final category in this domain is exemplified by a statement from a woman who described feeling undesirable to her spouse after her surgery. She wanted to know from him what it was like for him to touch her now. together that emphasized their relationship as distinct from their experience as a couple with breast cancer. This conceptual domain consisted of three categories: needing time together without the children [4]; needing to do more fun things [1]; and tired of listening to her worries [1]. Needing time together without the children. Couples claimed the illness demands took precedence over everything, including their time alone without their children. They needed to find a way to focus on their relationship again. One woman explained how difficult it was to ask others for help with childcare in order to have time alone. ‘One on one time is the last thing on the list. It gets put on hold. It’s hard to justify asking for help when it’s just because we want time [alone] together.’ Needing to be together as a couple Needing to do more fun things. One couple spoke of the need to have more fun. The woman said it this way: ‘This [cancer] is just one last thing. Makes you sit up and go ‘‘Whoa!’’ I think we need to do more fun things. Even if we just go to the park, or go sit down at the beach.’ Her spouse added, ‘I took a day of vacation today, and she and I went down to the beach. That was nice. That was relaxing. [We] need to do more of that.’ Twenty-one percent [n ¼ 6] of the couples chose to work on developing alternative ways of being Tired of listening to her worries. One man spoke of wanting to interact with his wife without I want to know, are you ever going to be able to touch me? I want to know if it’s foreign to touch? Communicate to me what it’s like. You touch every other part of my body [except my breast] and it makes me feel repulsive to you. Copyright # 2006 John Wiley & Sons, Ltd. Psycho-Oncology 15: 1055–1064 (2006) COUPLES LIVING WITH EARLY STAGE BREAST CANCER discussing worries and concerns, which had increasingly become the focus of their conversations since the diagnosis. ‘I would like some opportunities just to have interactions, not around identified problems or worries. . . I get tired of listening to worries. . . It’s worse since cancer.’ Wondering about the children Seventeen percent [n ¼ 5] of the couples chose to work on concerns related to the impact of the breast cancer on their children. Concerns focused on uncertainty about their children’s experience. They wondered if the behavioral changes they observed in their children were attributable to the breast cancer; what the long term effects might be; and they did not know how to respond to their children’s needs. This conceptual domain consisted of three verbatim categories: trying to read the impact [2]; worrying about the lingering effects [2]; and not knowing how to respond [3]. Trying to read the impact. Parents spoke of not knowing what the impact of the illness was on their children, particularly when the children did not talk about the breast cancer. One couple described their child as not talking about the breast cancer, but expressed emotions, leaving them uncertain if the child’s feelings were related to the cancer. The mother said, ‘He won’t talk about it.’ The father added, ‘He’ll just. . .break down and just start crying [and won’t tell you why].’ Parents struggled to understand the meaning of the behavior they observed in their children after the diagnosis. One woman wondered if her treatment was related to her children’s behavior: When they switched my medication, I was sick. It just hit me that they [kids] became very sick and stayed home that week and that might be why, because they were afraid. 1061 possible some things are going on with him, like at first he had this intense anger and fear, hurt feelings. And they seem to have resolved at least on the surface. Not knowing how to respond. Parents wanted to know if their children needed help, and if so, the best way to provide that help. One father expressed it this way, ‘I don’t know if there’s something we need to do or get him some professional help or what.’ Managing the threat of breast cancer Seventeen percent [n ¼ 5] of the couples chose to focus on how to manage the increased risk associated with the presence of cancer in their lives, including how they made treatment-related decisions. This conceptual domain consisted of three categories: preventing recurrence [3]; fearing recurrence [1]; and needing assistance in seeking medical information [1]. Preventing a recurrence. Three of the couples wanted to identify ways to prevent cancer recurrence. Couples had already done research on behaviors or health habits that might contribute to a cancer recurrence but they wanted to know if there was anything else they could do. Often they wanted ‘the answer’ on ways to prevent recurrence. One couple tried to determine if stress in their life contributed to the cancer and if better managing stress would prevent a recurrence. The spouse described his view: You’re tying it [stress and cancer] so closely together. . .it’s almost like you’re looking for anything that you could have had some control over, that you shouldn’t have done. . .I truly don’t believe that you got breast cancer because of the stress. If you are so concerned about the stress that you’re going to have cancer, pretty soon you’re going to have stress because you’re worried about getting stressed and getting cancer. Worrying about the lingering effects. Looking back on the intense early phases of the illness, some parents voiced concern that their children may have had unmet needs at that time. They were now worried about delayed consequences. One woman explained: Fearing recurrence. One couple explicitly expressed fear about recurrence. The spouse explained it this way, ‘The fear. . .and the not knowing and the mental stress. . .that’s dominating everything right now.’ I’m concerned about my son and whether he has any lingering emotional effects that need to be dealt with. . . I was so tired and detached from the normal family interactions during chemotherapy. . .it’s Needing assistance in seeking medical information. Another couple needed help in seeking an alternative medical opinion regarding a Copyright # 2006 John Wiley & Sons, Ltd. Psycho-Oncology 15: 1055–1064 (2006) 1062 M.E. SHANDS ET AL. treatment option. The woman asked, ‘What are my choices? Somebody told me to take it out of the area and have a second opinion. . . But where do I go then?’ DISCUSSION The concerns couples chose to work on adds to our understanding of breast cancer as a couples’ joint experience. Results support the presence of stress and tension in the marital relationship during the first year after a woman’s diagnosis of breast cancer as the primary or core concern for both the diagnosed woman and her spouse (Carter et al., 1993; Lewis et al., 1993; Manne et al., 2004; Northouse et al., 1998). In the current study, 66% of the couples wanted to work on resolving the tension in their relationship or finding better ways to be together as a couple. Results from the post hoc analysis provide additional evidence that relationship concerns were dominant. Of the 29 couples, only four offered other concerns which were then not chosen to be worked with the professional coaches. The concerns of two of these four couples were also relationship concerns, the remaining two related to fear of recurrence and decision making related to reconstructive surgery. Although some researchers have suggested that poorer marital functioning with breast cancer may be a normal reaction to a life-threatening event or primarily present in those with marital difficulties to begin with (Carter et al., 1993; Dorval et al., 1999), evidence from the current study is that couples wanted to do something to reduce that tension. We, like Northouse (1989) and Skerrett (2003) underscore the importance of assisting couples manage the tension in their relationship linked, in their view, to the breast cancer. Current study findings are consistent with other research that has identified communication challenges in couples living with breast cancer as a concern that can impact psychosocial distress and marital satisfaction (Hilton, 1993, 1994; Hoskins, 1995; Lewis and Deal, 1995; Lichtman et al., 1987; Manne et al., 2004; Samms, 1999; Zunkel, 2002). When the demands of the cancer became primary for couples in the current study, they chose to find a way to center on each other and their relationship, not on the breast cancer. They wanted to gain some relief from being a couple with breast cancer. Copyright # 2006 John Wiley & Sons, Ltd. The few couples who chose to work on concerns about their children searched for guidance and their concerns were numerous. They did not know how the cancer affected their children and they wanted to do the ‘right thing.’ This concern about doing the right thing confirms results by others (Hilton, 1993). Couples in the current study wanted to know how to assess their children’s needs and respond to their children’s expressed as well as unexpressed concerns. Some couples needed help in knowing how to distinguish normal developmental changes in their children from behavioral changes related to the breast cancer. Couples who chose to work on managing the experience of living with a life threatening illness wanted to acquire a new set of knowledge, skills, and attitudes to more effectively deal with the uncertainty and fear associated with the possibility of cancer recurrence. They struggled with ways to manage the related fear. CLINICAL IMPLICATIONS ‘Most of us think of the family as the context of care, not the unit of care. Often we are more interested in helping the family members help the patient than we are in helping the family members themselves’ (Lewis, 1998, p. 1385). Cancer centers and other providers of oncology care need to reevaluate their commitment to family focused oncology care, including couple-focused services. Medical care for the patient is critical, but results from the current study show that a woman’s diagnosis and treatment of breast cancer has a major impact on her spouse and family. Couples experiencing breast cancer have concerns that require focused attention and couple level support services. While drop-in support groups, sponsored by hospitals and other organizations are offered in many communities for patients and family members, groups are often not the place for a couple to receive individual attention about tension in their relationship or tension in their family brought on by the breast cancer. A more effective approach would be to offer the couple time to meet with a trained clinician to identify core concerns and behavioral ways to better manage the concerns. In addition, couple-focused services enable each member of the pair to express what is of concern, thereby enabling them to observe each other’s struggle. Psycho-Oncology 15: 1055–1064 (2006) COUPLES LIVING WITH EARLY STAGE BREAST CANCER Clinicians might begin by compiling a list of core concerns, based on this research as well as that done by others, and invite couples to identify their issues. Then, clinicians can link the couple with appropriate resources to address their issues. Furthermore, because new core concerns could arise over time, providers need to establish a formal, systematic way to check-in with couples throughout the illness experience. Oncology care centers can also establish programs to train clinicians on-site to provide professional coaching (Lewis and Zahlis, 1997). By creating on-site professional coaching, couples will have the benefit of receiving treatment for their family’s illness, not just treatment for the woman’s breast disease. ACKNOWLEDGEMENTS Research reported in this paper was made possible through grants from the National Cancer Institute (R01-CA-55347 and R01-CA-78424), National Institutes of Health. The authors acknowledge members of the research team: Maryanne Bletscher, MS; Sue Bodurtha, RN, MN; Maryanne Bozette, RN, PhD; Patricia Buchsel, RN, MN; Susan M. Casey, RN, PhD; Sharon C. Firsich, RN, MN; Lori Girouard, R.N., M.N.; Mary A. 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