QHRXXX10.1177/1049732314523842Qualitative Health ResearchWilliams et al.
Purposeful Normalization When Caring for Husbands Recovering From Prostate Cancer
Qualitative Health Research 2014, Vol. 24(3) 306–316 © The Author(s) 2014 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049732314523842 qhr.sagepub.com
Kristen C. Williams1, Elisabeth M. Hicks2, Nancy Chang2, Sarah E. Connor2, and Sally L. Maliski2
Abstract Despite a growing awareness that prostate cancer is a “couple’s disease,” the coping strategies, subjective distress, and emotional needs of partners are not adequately addressed. To better understand wives’ experiences and processes they enact, we recruited 28 low-income Latinas caring for husbands recovering from prostatectomies to participate in interviews at three time points. Their narratives destabilize a common focus on physical side effects and an implicit bias toward men’s reactions. We critically examine an overarching process of normalization, with underlying themes working both toward and against normality. We identified dissonance between detailed accounts of major lifestyle changes and professed normalization. We detail the women’s purposeful methods to counteract negative impacts on their lives while seeking support externally. A better understanding of women’s strategies and coping is critical to design interventions and education to both capitalize on partners’ role in recovery while also addressing hidden causes of increased subjective distress. Keywords cancer, psychosocial aspects; caregivers / caregiving; immigrants / migrants; Latino / Hispanic people; longitudinal studies; relationships, primary partner Prostate cancer is the most frequently diagnosed noncutaneous cancer in men in the United States (American Cancer Society, 2013). Despite high incidence rates, overall survival rates are very high and increasing (American Cancer Society). This combination of high incidence and high survival has resulted in a large population of prostate cancer survivors living with the side effects of prostate cancer treatment. Quality-of-lifeaffecting side effects such as incontinence and erectile dysfunction, as well as the fact that many prostate cancer survivors are married men, have prompted many to describe prostate cancer as a “couple’s disease” (Harden, Northouse, & Mood, 2006; Soloway, Soloway, Kim, & Kava, 2005; Wittmann et al., 2009; Zhou et al., 2011). It has become clear that partners have a significant impact on men’s adjustment when dealing with prostate cancer. In one study of 291 low-income men enrolled in a state-funded prostate cancer treatment assistance program, Maliski, Kwan, Orecklin, Saigal, and Litwin (2005) found that when controlling for demographic and disease factors, partnered men had significantly better mental health, lower symptom distress, and less urinary bother than unpartnered men. Similarly, in a study of surveillance epidemiology and end-results data, Krongrad, Lai, Burke, Goodkin, and
Lai (1996) found that men with prostate cancer who were married survived longer than those who were not when controlling for demographic and disease factors. Banthia and colleagues (2003) also found that a strong intimate relationship predicted lower levels of distress, even in the presence of maladaptive coping techniques. Despite the apparent advantages of being partnered for men with prostate cancer, their partners experience significant distress when faced with diagnosis and treatment. Several research teams have noted in metaanalyses that partners of men with cancer experienced greater subjective distress from prostate cancer diagnosis and treatment than the men with prostate cancer themselves (Couper et al., 2006; Hagedoorn, Sanderman, Bolks, Tuinstra, & Coyne, 2008; Resendes & McCorkle, 2006). Informal cancer caregivers experienced a chronic stress situation, with attendant risks for chronic disease, 1
The Ohio State University, Columbus, Ohio, USA University of California, Los Angeles, California, USA
Corresponding Author: Sally L. Maliski, UCLA School of Nursing, BOX 956918, 2-256 Factor Building, Los Angeles, CA 90095-6918, USA. Email: [email protected]
Williams et al. Please tell me about how life has been for you since [your OR your spouse’s] treatment for prostate cancer? o What was it like when you heard the news? o What do you think it was like for your partner?
What symptoms have [you OR your spouse] had related to prostate cancer or its treatments? o How does that affect your life?
Next, could you talk about how you feel these symptoms may be affecting your relationship with your partner? o In what ways do you feel that you relate or respond differently to your partner? o What has been helpful in your relationship as you’ve dealt with these symptoms?
• Is there anything else that you feel would be important for us to know to help us understand how being treated for prostate cancer might affect couples?
Figure 1. Abbreviated interview guide.
increased mortality, weakened immune systems, and poor mental health. Women were more likely to feel burdened and distressed and to spend more hours giving informal care. Wives were more prone to make caregiving their primary task—often increasing their social isolation and increasing their burden (Girgis, Lambert, Johnson, Waller, & Currow, 2013; McCorkle & Given, 2012; Northouse, Mood, Templin, Mellon, & George, 2000; Northouse, Williams, Given, & McCorkle, 2012). Qualitative researchers have elucidated numerous coping strategies that couples utilize to manage specific aspects of the patient’s disease. For example, couples often reframed erectile dysfunction as manageable in the context of trading sex for the patient’s life (Beck, Robinson, & Carlson, 2009; Gray, Fitch, Phillips, Labrecque, & Fergus, 2000; Maliski, Heilemann, & McCorkle, 2001; Maliski, Rivera, Connor, Lopez, & Litwin, 2008; Oliffe, 2005; Resendes & McCorkle, 2006). Research teams have also developed several interventions for couples to mitigate these impacts. Unfortunately, to our knowledge, qualitative researchers have only explored partners’ experiences in tandem with the men with prostate cancer for whom they care, and this necessarily limited the depth with which their experiences could be detailed. Thus, although we know that partners of men with prostate cancer experience significant distress, we know little about how they manage their distress, what parts of their cancer experiences cause them the most distress, or how they conceptualize caring for their recovering partner. In our literature review, we primarily found qualitative information on partners’ physical caretaking and positivity, whereas data on partners’ distress was somewhat cursory (Gray et al., 2000; Oliffe, 2005; Sanders, Pedro, Bantum, & Galbraith, 2006). Without a better understanding of the experiences and needs of partners of men with prostate cancer, we cannot truly treat prostate cancer as the couple’s disease that we now understand it to be.
With this study, we aimed to describe the experiences of low-income Latinas longitudinally as their husbands recovered from radical prostatectomy for prostate cancer, as well as to develop a framework for understanding the strategies they used when caring for their husband and coping with his illness and its side effects. Several research teams have found that radical prostatectomy had particularly harsh urinary and sexual side effects (Lilleby, Fosså, Wæhre, & Olsen, 1999; Madalinska et al., 2001; Maliski, Kwan, Elashoff, & Litwin, 2008; Potosky et al., 2004), and we expected that these would factor prominently in the narratives.
Method Participants After receiving approval from the human subjects institutional review boards at our funding institution and study site, we recruited Latino men who had a radical prostatectomy within the previous 6 months and their partners. These participants came from a longitudinal survey of men with prostate cancer recruited from a state-funded program providing free prostate cancer treatment to lowincome men with no insurance. A staff member from the longitudinal survey identified potentially eligible patients and introduced them to a member of the current study team, who explained the study and collected informed consent. Once consented, study staff asked to speak with men’s partners to explain the study and collect informed consent. The study coordinator then contacted the patient and his partner to schedule telephone interviews.
Procedure Bilingual interviewers trained by the senior author conducted in-depth, semistructured interviews by phone in
308 the language preferred by the participants. Interviews with patients and their partners were conducted separately. Interviewers asked partners to talk about the patient’s prostate cancer treatment, interactions with the patient during this time, and the effects prostate cancer treatment had on their relationship (see the interview guide in Figure 1). The research team has many years of combined experience conducting telephone interviews. Telephone interviews are effective for reaching participants who are unable to travel, who live in rural isolation, have unstable living conditions (e.g., move often), and have flexible work schedules. In this study, telephone interviewing was especially appropriate because many of the women cared for children in their home and lived far from the study university. Telephone interviews were also effective for interviewing the women separately from a male relative, which can be challenging in older-generation, traditional, Latino couples. We have a protocol for dealing with psychologically distraught participants, which involves nurse counseling and referral resources. Our team has a safe and extensive track record with telephone surveying, interviewing, and care coordination. Interviewers conducted three interviews with each participant at intervals of 3 to 6 months. On average, the second interview (T2) was conducted 6 months after the first interview (T1). The third interviews (T3) were scheduled at the beginning of the recruitment period for 12 months after the first interview, but because of concerns about attrition these interviews were scheduled for 9 months after the baseline toward the end of the recruitment period. Overall, the average time between the baseline interview and the third interview was 10 months. All interviews were audiorecorded and transcribed verbatim by research assistants and study coordinators. Study coordinators translated Spanish transcriptions using the process our team developed for qualitative research (Lopez, Figueroa, Connor, & Maliski, 2008). We began our analysis with line-by-line coding and constant comparison among codes. The first three authors independently coded transcripts by time point. We then identified, described, and labeled emerging categories until no new categories were found. In follow-up interviews, we continued to probe categories found in initial interviews. We reached saturation with 15 to 17 transcripts from each time point. The first and third authors tracked how many participants spoke about each category to assess prevalence. Categories that were touched on by a large majority of participants were incorporated into our process of weaving together themes. Through research meetings, we reached consensus on the dimensions and names of categories. The first author grouped the categories into overarching themes (which were approved by the team) and kept a log of each theme with an exemplary quote from each time point to assess
Qualitative Health Research 24(3) the robustness of each theme. Using this log, the team determined that many themes did not vary greatly at different time points, but any new dimensions at Times 2 (T2) and 3 (T3) were noted and are described in the Results. After refining the overarching themes, the first three authors contributed their notes and memos from coding to identify the discussion points. All authors read and edited drafts of the article.
Results Participants We recruited 28 partners to the study. Ten participants were lost to followup for the second interviews; 10 were lost for the third interview for health reasons or an inability to contact. We skipped one T2 interview because of an inability to contact. All partners identified themselves as women and Latino. All interviews were conducted in Spanish. Ages ranged from 36 to 63 years, with a mean of 55.1 years. All participants were born outside the United States, primarily in Mexico (78.6%), Central America (10.7%), and South America (10.7%). They had lived in the United States for between 1 and 40 years, with a mean of 17.2 years. Most (71.4%) were homemakers, but 21.4% worked as caretakers for children or the disabled and 10.7% worked outside the home in other capacities. We found surprisingly few changes across time points; some themes were found more frequently at some time points than others, but almost all were found at all time points. Instead, we found an overarching process of normalization across all time points, with some themes working against normality whereas others worked toward normality. Themes in the former category included feelings and changes that challenged women’s feelings of normality; those in the latter category included women’s efforts and outside influences working toward that sense of normality.
Working Against Normality Threats to the normality of women’s lives began immediately at diagnosis and continued throughout the time periods we examined. Some concerns diminished with time, such as initial shock and fear and dealing with the side effects, whereas others increased with time, such as erectile dysfunction and their husband’s depression and irritability. Although these latter two could also be considered side effects, the women spoke about these topics in ways different enough from other physical side effects, particularly in the ways that they changed over time, that they merit a separate discussion. Initial shock and fear. The majority of women’s fears came with their husband’s initial diagnosis, and they primarily
Williams et al. spoke of them at T1and T2. When asked about the moment they heard their husband’s diagnosis, women often described feeling shocked: It was something sad, horrific, because he came and he gave me the news, and—and when he came, well, he was trying to, uh, make a great effort in his face so that he would not make us feel bad. But well, I—I saw the sadness anyway in his face. . . . Well, he came and he told me, “Guess what?” he says. “The tests showed cancer.” . . . I felt that the floor dropped. (T1)
They also described fear of losing their husband: “It’s when you hear the word ‘cancer.’ Well, you think that, like you are going to lose the person. . . . Well, I thought that if I lost him, it was going to be difficult” (T2). Women’s fears generally diminished as time went by, although a few mentioned fear of recurrence: “I don’t know. I think that—that something is going to get messed up inside and—and revive [the cancer]. I don’t know. I get very scared” (T2). By T3, however, women rarely spoke of this fear. Dealing with the symptoms and side effects. Related to the fear they felt, women cited anxiety, difficulty, and frustration when dealing with the symptoms and side effects of their husband’s disease and treatment, particularly when they were dealing with their own health problems: It was difficult. . . . I was sick from having all of those illnesses, and then his problem. Well, I got worse, and . . . I don’t like to see blood. . . . I would wash his parts and I would dry him and put his diapers on him, oh man. I found it difficult with him, but thank God, we got through it. Look now—now he puts his diaper on by himself. Now, well, he can do it, right? But before, I—I would take him by the hand to the bathroom and—and I would clean him, wash him, and I would put his diaper on. (T2)
We observed these frustrations at T1 and, to a lesser extent, at T2, but as their husband healed and became more independent, women spoke less about the physical side effects. The husbands’ depression and irritability. Not all of the changes that women experienced with their husband’s diagnosis decreased with time, however. Beginning at T1, but increasingly at subsequent time points, women often cited negative changes in their husband’s personality. Some women noticed that their husband was more irritable and quicker to anger: We have always been passive, and when all of a sudden there is something . . . that he doesn’t like . . . he wants to scream, and I tell him . . . to try to lower his temperament, that he’s not doing well, that he has never been that way. (T2)
309 Others noticed frequent depression and increased emotional sensitivity: Because they get very sensitive . . . they get very emotional. So, that is what I would say: to have a little bit of patience, to give them a lot of love, a lot of care, a lot of understanding, because they get very negative, for everything, for everything. (T3)
One woman explained at T3 that her husband had even considered suicide. Although most women continued to see these changes through T3, for others they resolved over time: In the beginning, I told you that he felt depressed. Um, sometimes a bit upset for no reason. . . . Now it seems that we overcame all of that. Now he seems normal, how he has always been. Doing the things he has to do, um, talking normally, laughing the same. He is fine. (T2)
Managing erectile dysfunction. Although women spoke about erectile dysfunction at every time point, they discussed it more frequently and more in depth in each subsequent interview. Women generally said that their husband’s erectile dysfunction did not affect them much personally, although many assumed that it would have affected other women: It has not affected me at all, sincerely . . . because I have been a woman that has not been very demanding. . . . Yes, there are women that are affected by it, but . . . we are different and we have different ways of acting. And it hasn’t affected me at all, because we have been married forty-one years. (T3)
They did, however, worry about their husband’s reaction to erectile dysfunction, and put his feelings first. One described how she used to like being physically affectionate with her husband, but stopped because she worried that he would think she wanted to have sex. Others worried that their husband would become depressed because of the loss of erectile function: He really tries being strong, but since we tried in sexual relations and . . . his penis didn’t respond . . . he felt sad, and he said that, “What is it for?” And I said, “Look, don’t start with that . . . there is no reason to become embittered.” But I see him from time to time with his hand on the chin. I see him like a little . . . isolated. (T2)
Most women attempted to reassure their husband through reframing and explaining that they understood, as discussed below. A few also explained how they tried to dispel their own sexual feelings so that they would not increase the impact erectile dysfunction had on their husband:
310 And I try to—to dispel some things or some [sexual] desire that I have with other things. . . . Going out to have fun, taking trips, and perhaps relaxing and going to the beach, who knows? So I try to understand and get through things, right? (T2)
Notably, only 2 women mentioned attempting any sexual alternative to vaginal intercourse, although others described refocusing their intimate life on holding hands or cuddling: He tried and he feels that he finishes, but he expects it to be like it was before the operation. . . . So that he won’t feel bad, I tell him that perhaps over here, through the rectum he can maybe do it. But no, I know that—I don’t—no. (T3)
Working Toward Normal Women described many themes that kept them feeling or moving toward a sense of normality. Most of these were purposeful strategies on the part of the women themselves, whereas others were outside forces. From the first time point forward, women utilized these stabilizing forces to move toward a place that, although it might not have looked like their life before their husband’s diagnosis, felt normal. Their use of these strategies changed little over the three time points. Protecting their husband from their—and his—emotions. Despite their feelings of shock and fear at their husband’s initial diagnosis, women worked to present a strong face to their husband, particularly in the first two time points: “I pretended to have a lot of strength to not show him that—that in reality I was going down.” One woman explained that she wished the doctors had told her separately from her husband so that she had time to compose herself before facing her husband: “They should have at least told me, uh, apart. . . . First you have to control yourself to be able to give him encouragement. Tell him, ‘Listen, everything is going to be okay. Don’t worry’” (T1). Even after the initial shock, however, women explained the importance of concealing their emotions and showing their husband that they had everything under control:
Qualitative Health Research 24(3) I talked to [my children] since the beginning, when they first told us. And I always told them, look, we are all going to support him. We are going to take it like something normal and talk to him. “We are with you, and we are going to fight and we are going to help you fight.” . . . So he has that support. (T2)
Beginning at T2 and continuing at T3, the women’s focus shifted toward managing their husband’s emotional changes. They primarily used encouragement to address depression and met irritable outbursts with patience and calm: “I’ll leave him, instead of saying things and getting worse, because he gets angrier. My advice would be when they want to fight, when they start fighting, it’s better to maintain silence” (T3). Throughout all three time points, women described the need to be patient and understanding of his situation, and how these virtues contributed to their efforts to protect their husband from his emotions: What I would say that would help a lot, a lot, a lot, is that in those moments, in those problems, is to have a lot of love, a lot of care, a lot of understanding, a lot of patience and talking about patience as much as they can, to not make him go through a difficult moment, because it does affect them a lot. (T3)
Normalizing changes. Women’s most direct efforts toward returning to a sense of normality were actively conceptualizing their situation as normal by downplaying the changes they experienced, reframing their situation, and reiterating their commitment to “moving forward” at all three time points. Many women minimized the changes occurring in their life by simply describing everything as normal, even after describing large changes in their relationships or daily life when asked: He was already having the problem [erectile dysfunction], and now that he’s had the surgery I know that it’s even more difficult. . . . He knows that he can’t do anything . . . so then I understand. . . . We are treating it as something that can’t happen, and we’re accepting the situation. I don’t reproach him and he doesn’t against me at all. Everything is normal. (T1)
I got very sad to see him like that, but I tried to be strong and say, “I think that the last thing he wants is to see that someone feels defeated, right?” . . . I put my pains aside. . . . I had to shower him. I had to change him. I had to help him in all that I could, right? (T1)
Reframing allowed women to tell themselves and their husband that their situation was normal within their current context or in comparison to others who were worse off. This happened most often with erectile dysfunction, which many women normalized in terms of their age, as a trade for their husband’s life, or in the context of already having children:
They also worked to manage the reactions of their family members through showing that same strong front, primarily at T1 and T2:
I tell him, “Look, you are older already, and so am I. You already lived. We already lived. What else do you want?” But just to be, uh, together. Because sometimes he says, “We are old already.” It has been a year that he accepted it,
Williams et al. because before he did not want to accept that he was old. But now, he has accepted it, and I tell him, now the old couple goes to bed early. He is at ease; I am at ease. Very comfortable. I tell him, “Look, it is nice to get this age and with your companion on the side, well, and no longer be thinking in the carnal stuff or anything. Now we just grab each other by the hand like old people.” (T1) I tell him that everything has a price, and by taking off that part of the cancer, I tell him that perhaps it could be another part that he was no longer going to be able to have sexual relations, more so right now, soon. (T3) With the surgery they told him that, well, he wouldn’t be able anymore to have children, and I told [the doctor] . . . “No, no what for should we have kids?” I told him, “We already have what God gave us.” I told him, “Seven in the family we have.” (T1)
Whereas reframing allowed them to normalize their situation, women used “moving forward” to put the changes brought on by their husband’s illness behind them. This phrase was common in many interviews across time points and connoted fighting, getting better, and getting past their husband’s cancer: “I am not going to say that [it’s] one hundred percent good, right? Because I would lie to myself. But I am understanding how to cope with it. Moving forward because of this situation” (T2). “Well, only understand that cancer is something that has a solution, that we have to move forward, have faith, continue struggling” (T1). Dietary changes. From the first time point forward, women commonly cited diet as a way in which their life had changed since their husband’s diagnosis, yet they seemed to use such changes as a normalizing force by exerting a positive influence on their husband’s health through his diet. They often spoke about dietary changes in “we” terms, seeming not to have thought twice about changing their own diet along with their husband’s after his diagnosis: When they gave us the news that he had cancer, we started to go walking. The way we cook at home changed a lot. Uh, we added more vegetables, more fruits. Uh, we try to cook with not that much fat. (T1)
311 Some men tried to avoid the changes by getting food for themselves that they knew they were not supposed to eat, but their wife did not let them forget that the dietary changes were for their own good: He is not supposed to eat sugar, and not too much salt, and sometimes he eats ice cream. He is not supposed to eat ice cream, and yet he still puts more syrup on the ice cream. And that is when I tell him that it is for his own good, uh huh, because right now your weight is becoming normal, again it goes up. (T1)
By the third time point, only a few women were still talking about their dietary changes. Judging by their characterization of these changes as ways in which they were protecting their husband’s health, however, it is likely that rather than abandoning these changes, they simply assimilated them into their normal life: And we’re used to dinner. You’re going to get milk and some fruit that I bought, like sweet potato, shallots, potatoes, something to give, cooked fruit, vegetables with milk, and I take recipes. I make medical with him. I tell, “This, because the squash is a diuretic and cleans the kidney.” (T2)
Family support. When asked where they found support, women at every time point spoke about their family. They occasionally mentioned receiving instrumental support such as rides, money, and translation, but primarily spoke of the emotional support they received through phone calls and visits. Some women relied primarily on family members of their own generation, such as their siblings and siblings-in-law, whereas others relied on children or even grandchildren for support: Participant (P): More than anything, the company of my siblings . . . of my family members. Well, I’d always talk with them even if it’s over the phone. But I’d also be talking to them as they encouraged me more also. Interviewer (I): What is it that they would tell you? P: Well, that I shouldn’t worry, that everything would be okay, and that I shouldn’t be like I was [distressed], because there are times that with them, for example, that I’d vent. (T1)
Although their husband sometimes resisted the dietary changes, women persisted in the face of their husband’s complaints:
Well, more than anything over the phone [laughs]. Yes, over the phone. Sometimes every third day I am calling my daughters in Tijuana, and then here in Santa Paula I have a son. . . . He understands me as well. (T2)
He accepts more that I make him chicken soup and he eats it, even though he complains sometimes. . . . I tell him, “If I give you chicken soup in the morning and chicken soup in the evening . . . it is because you need it. I cannot be giving you fats. . . . You have to eat the fruit and vegetables that I give you because it is what your body needs now.” (T1)
You know what has helped us? I think that if the two of us were alone we’d be depressed, but my small grandchildren are here. They come and make noise. They sleep here. In other words, they keep us active. “Take us here, Grandpa!” And there goes Grandpa with them, taking them where they want. All of that helps one forget things. (T2)
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Figure 2. Relationships between themes.
Families were not always there to support the women, however. Some women experienced moments when they needed support and did not receive it, often in the early stages of treatment: I did have the necessity to—to share the load, right? . . . But well, there was nobody [at the hospital]. Nobody spoke Spanish. . . . [crying] I was so desperate that the lady who was there . . . she turned around and she took out three sheets from her notebook. She gave them to me, and she gave me a pen, and I started to fill it out, and it relaxed me a little bit, right? (T2)
A few women received very little support at all, and these women clearly carried a greater burden than those who were supported: When he went back to work, and well, I stayed home by myself. Here, by myself in the hills. And that is how I am daily: by myself from six in the morning until five in the afternoon that he comes home, five thirty. I am by myself here. Can you believe? With nothing to do, just, like the saying goes, thinking only bad thoughts. (T2)
Faith. Women found great support in their faith across time points. Many prayed for support in their normalizing tasks, asking for patience and understanding. Most indicated that it was essential to trust in God, and firmly believed that God would ensure their husband’s recovery: I: And when you hear “cancer,” what do you think? What goes through your mind? P: Uh, well, that someone is going to die. I: Uh huh. And did you think that was going to happen? P: No, I had—I had a lot of faith in God that no. . . . I put him in the hands of God so that He could heal him (T1)
Some also explained at later time points that their faith allowed them to use the experience of their husband’s cancer as an opportunity to change their life in a positive way:
I mean, you stop working, you stop a lot of things, and you have rest. And in that you sort of look back and say, I have been doing this, I have been doing that. I mean, it’s like God gives you that opportunity to—to think about and to see what is good, what is bad, what you should change. (T2)
Feeling closer. Finally, women often felt that the experience had brought them closer to their husband and improved their relationship, and they described these changes at every time point: We have always had good communication since we got married. Everything has been good with our relationship, but I think that . . . it did improve a little more. We communicate a little more. For anything, we are both there, something that before well, maybe we left something out, right? (T3)
Even a woman who spent most of her time in Mexico, away from her husband, described feeling great improvement in their relationship: Positively, yes, positively. . . . It has united us a lot, this disease, a lot, a lot, because, well, he was a man that was always alone here. And now he says, he tells the whole world, “My wife was with me over there in the hospital until she took me out.” He is proud of his—of his wifey [laughs]. His wifey. (T1)
Almost all of the women in this study experienced positive changes in their relationship, but there were a few exceptions. These women, whose relationship was (often) in bad shape before their husband’s diagnosis, saw their situation worsen. One woman described her life as “different, because there is nothing anymore, there is nothing, nothing, nothing of nothing. No affection, not even a hug, not even a—nothing. . . . As if you were just living with someone, everything is cold” (T3).
Williams et al.
lives, and improving their diets. They marshaled the support of their faith and their family when they could, but bore the extra burden when their family was not there. As one woman explained,
In this longitudinal study of the wives of low-income Latino men with prostate cancer, we found few changes over time. Instead, we saw an overarching process of normalization, with several themes working toward and several working against normality. The shock and fear of the initial diagnosis, coping with the symptoms and side effects, their husband’s depression and irritability, and erectile dysfunction, all worked against a feeling of normality, whereas protecting their husband from their emotions, normalizing changes, dietary changes, family support, and feeling closer helped women feel that their life was more normal. The relationship between these themes is illustrated in Figure 2. Although the women in this study were demographically very different from the women included in previous research involving partners of men with prostate cancer, they described their experiences in many similar ways. Our focus on Latinas did not yield significant findings based on ethnicity or culture. We did note that the participants faced many structural barriers, such as transportation, family fragmentation, flexible/informal labor situations, and instability in their housing, work, and insurance status. Many women were first-generation immigrants and their lifestyles reflected their migration status. However, their accounts of structural barriers were much less prevalent and salient than their accounts of an emotional journey. Non-Latina women in other studies cited similar negative consequences of their husband’s cancer, and indeed, previous researchers also noted couples’ need to return to “normal” as soon as possible (Beck et al., 2009; Gray et al., 2000; Oliffe, 2005; Phillips et al., 2000). Therefore, our findings with Latina women seem to add to the growing literature about caregiver burden and are generalizable to other ethnicities (Bevans & Sternberg, 2012; Northouse et al., 2012; Resendes & McCorkle, 2006; Schulz & Sherwood, 2008). Given the expectations of poorer outcomes and disadvantages that often come with socioeconomic differences such as those between the women in the current study and women in previous research, it is noteworthy that we see so many similarities. Our findings are consonant with literature about structural barriers to health based on socioeconomic status, which are exacerbated by a lack of formal caregiving support, adding the burden of informal caregiving to families already experiencing high degrees of stress and need (Herrera et al., 2013; Karlin, Weil, & Gould, 2012). Still, our observations offer novel insight into the purposeful processes women use to manage these difficulties, as well as the outside forces that support them. These women contributed significantly to their husband’s recovery by actively shaping the emotional response that they and their family displayed, changing the ways that they and their husband thought about the impacts on their
The main thing is to be strong. To be able to come out of whatever problem that can present itself. To get the family through it. . . . To get close to God, to be strong, to be able to confront problems that he, in those moments, couldn’t resolve, and well, to put in a lot of effort. There is no other way.
The emphasis on strength, however, allowed us to see the difficulty of their various situations. It is clear in the literature that women like those examined here tend to experience a large amount of subjective distress, often more than their partner with cancer. We would expect to hear about this distress in these women’s narratives, but although they described many negative impacts on their life, their complaints are largely absent. What comes across loudly are their assurances that everything is normal. Northouse et al. (2000) posited that women, especially, suffer more distress than their care recipients because they communicate their needs less in an effort not to burden others around them. We believe that this benevolent concealment was likely a factor in the scarcity of women’s complaints in this study. The process of normalization, then, has the potential to be both helpful and harmful at once. Although women use it to help their family and themselves through a difficult time, it also displaces their negative emotions. It was a blend of coping strategies in which women engaged with their husband’s problems, but disengaged with their own, and disengagement styles of coping are often more harmful than helpful in the long term (Carver & ConnorSmith, 2010; Kraemer, Stanton, Meyerowitz, Rowland, & Ganz, 2011). Protecting a partner from one’s emotions, for example, has been found to have negative psychological impacts on the caregiver, the patient, and their relationship (Langer, Brown, & Syrjala, 2009). Even though the women in the current study seemed mostly successful in their coping efforts up to the times of their interviews, their insistence that everything was normal in the face of the many other changes they described is dissonant. We, like previous researchers, made the mistake of focusing on the men, with prostate cancer’s symptoms and recovery, in our interviews, and this might have helped conceal the emotional distress the women faced. Although we believe that our initial questions focusing on the physical aspects and the men’s experiences primed women to speak less about themselves and more about their husband, they still depicted their experiences with prostate cancer as primarily an emotional journey. Others analyzing responses from both members of couples have
314 come to similar conclusions about the primacy of the emotional experience, yet the bulk of the prostate cancer literature—both qualitative and quantitative—places great emphasis on physical symptoms such as erectile dysfunction. In light of the women’s focus on the emotional journey, despite our priming toward a focus on the physical, we believe this emphasis to be misplaced. Moreover, it is obscuring important sources of distress. Erectile dysfunction is a prime example of the misplaced emphasis on physical symptoms. Erectile dysfunction figures prominently in the prostate cancer literature, yet the women we interviewed as well as couples in previous research often described happily substituting cuddling, holding hands, and other intimate alternatives to intercourse (Beck et al., 2009; Maliski et al., 2001; Oliffe, 2005). Aging healthy couples have similarly described an expansion of their intimate life away from the intercourse-centered sexuality of their younger years toward a more body-wide experience (Gott & Hinchliff, 2003; Potts, Grace, Vares, & Gavey, 2006; Wiley & Bortz, 1996). Despite their worry about their husband’s reaction to erectile dysfunction, women in this study generally said that it did not bother them personally, particularly when they also described alternate forms of intimacy. Although this might have been another effort to push away their distress, it is likely that this was not the case for all of them, given that similar experiences are described even in healthy couples. Although erectile dysfunction certainly disturbs some relationships, intimacy might be a more relevant factor for most women facing a husband’s prostate cancer diagnosis. McClelland (2012) argued that it is essential to understand the importance of sex to individuals when measuring their sexual satisfaction. Others have argued that measuring distress is an essential component of diagnosing and treating sexual dysfunction (Basson et al., 2003). We argue that sexual priorities and distress are similarly essential to understanding the impact of erectile dysfunction on the partners of men with prostate cancer, and likely also on men with prostate cancer themselves. A better understanding of these factors might allow for care that is more applicable to couples’ needs in the real world and more representative of the emotional journey we have seen in qualitative studies. For those couples for whom intercourse is important, a focus on erectile dysfunction treatment might make sense. For women like those in the current study, couples’ therapy focused on maintaining intimacy and alternatives to intercourse, for example, might be more helpful.
Limitations As described above, we believe that our questions, particularly those at the beginning of each interview, focused
Qualitative Health Research 24(3) too strongly on physical symptoms and the husbands’ experiences. This might have primed women to speak more about their husband than themself, and more about the physical than the emotional. A number of recording issues prevented us from following most women across all time points, although we believe that the concordance between participants’ accounts allowed us to capture the most important data points. Finally, telephone interviews do not capture facial expressions or body language, which can sensitize interviewers to probe more deeply on certain topics. Despite these limitations, we found the women in this study to have many similarities to women in previous research, and thus believe that our findings might be useful in designing interventions and future research in populations similar to this one and in the general population.
Conclusions Riechers (2004) argued that it is essential for the patient’s intimate partner to be included in prostate cancer care to promote positive adjustment, emotional health, quality of life, and relationship health. Our findings support and enrich this assertion, describing the strategies partners used to promote these outcomes, the outside forces that supported them, and the centrality of the emotional journey in their experiences. They also indicated that the women used strategies that, although helpful in the short term, might increase their distress in the long term. Interventions considering these factors would be excellent additions to couple-focused postoperative care. For example, cultivating women’s involvement in dietary changes might allow women to contribute to recovery, empower women to make healthy changes in their family, and allow them to feel a measure of control over their husband’s health. Addressing their fears and frustrations through couples’ therapy might help them share their feelings with less fear that their own emotions will negatively impact their husband’s well-being. Simply acknowledging the emotional impact of both the illness itself and of caring for the patient might be helpful; if women believe that they must ignore or minimize their frustrations and difficulties with caretaking, an opportunity is missed to decrease their distress and offer support in managing these feelings. Intervention efforts might be especially well placed in environments in which women already feel supported, such as churches, communities, and in family settings. Those women who lack support might be harder to access, because they often are impacted by a lack of transportation that might allow them access to support groups, churches, and other community sources of support (Girgis et al., 2013). One route toward supporting these women could be through their husbands. For
Williams et al. example, they could be asked to come to their husband’s medical appointments and provided separate resources in the clinic, or offered time to speak with a nurse during the appointment. With the permission of the women, nurses might also be able to develop phone-based support groups or lists so that women can contact other women in similar situations while avoiding barriers of transportation, such as the interventions described by Badger et al. (2013) for Latina women. Given that women often cited receiving emotional support from their family by phone, this method might be well suited to this population. Partners of men with prostate cancer can be valuable members of men’s recovery teams, but despite their impressive and often effective individual efforts, it is clear that they are also in need of support. Future research must be dedicated to better understanding the needs of partners of men with prostate cancer and toward developing interventions that support them in their efforts, thus treating prostate cancer as a couple’s disease. Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The research presented in this article was funded by Department of Defense grant # W81XWH-07-1-0069.
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Author Biographies Kristen C. Williams, BA, is a clinical psychology graduate student at the Ohio State University in Columbus, Ohio, USA. Elisabeth M. Hicks, MA, is a research project manager for the School of Nursing at the University of California, Los Angeles, USA. Nancy Chang, MSN, is the lead clinical research nurse and coordinator for clinical research at Children's Hospital, Los Angeles, and a PhD student in the School of Nursing, University of California, Los Angeles, USA. Sarah E. Connor, MPH, CHES, is research manager for the University of California, Los Angeles, David Geffen School of Medicine Department of Urology, Los Angeles, California, USA. Sally L. Maliski, PhD, RN, is an associate professor and associate dean of Academic Affairs for the School of Nursing at the University of California, Los Angeles, USA.