Husbands: 10 Ways to be there when your wife has breast cancer

Breast cancer is a life threatening and relationship-threatening trauma. Peter J. Flierl, M.S.W., offers insights and common sense for husbands of patients with breast cancer.

When we marry the man or woman of our dreams, our soul mate and best friend, we expect to be together for a lifetime despite the odds against it with 6 of 10 marriages today ending in divorce. We truly believe that we will be together "for richer, for poorer, in sickness and in health, 'til death us do part." And then life intrudes: becoming a couple, learning to balance needs, the joy and awesome responsibility of becoming and being parents, managing careers and handling money. If a marriage is sound, it can weather any storm, survive virtually any trauma. If the relationship is not on solid ground, a trauma, almost any trauma or stress, can lead to its demise. That may account for the fact that nearly seven in ten marriages touched by breast cancer do not survive. There is no magic bullet, no panacea or formula, for surviving and indeed thriving despite of or in part due to facing breast cancer diagnosis and treatment, and subsequent life together. God it is said gives us challenges to build character, so you as a husband and the two of you as a couple have a great opportunity to build character, to create a lifetime love story. My bride of 28 years, Shirley, is a 22-year survivor of breast cancer. However, that does not define her. She is also a mother, a businesswoman, an educator, a lover, a community volunteer, and my lifetime partner. She was treated at age 37 for an aggressive, Stage 3 tumor that had extensive lymph node involvement. She is alive and well, still sexy with just one breast, and is an inspiration to other women facing this disease, particularly young women. Following are suggestions to other husbands on how to be there for your wife, how to help her become and remain a survivor.

1. Tell her you love her.

In a marriage or any intimate relationship, silence is not golden. The strong silent type need not apply for the position of husband, lover, best friend, confidante and supporter of a woman with breast cancer. Your bride, your wife, needs and wants to hear from you. Actions may speak louder than words, and you may take all the right actions, but speaking words brings comfort, reassurance and knowledge of your inner feelings. She cannot read your mind. Being there for her is more than physical or economic security. Words have meaning. And the three most important words in the English language at this time, at this moment, when together you are facing her mortality, are: "I love you."

The late Louise Crisafi, a saint here on Earth who always gave of herself for others in need, taught me this lesson on the Friday my wife, Shirley Ann, had her biopsy and was diagnosed. Shirley had opted for a two-step process for diagnosis one day and treatment, i.e., surgical removal of her right breast, a mastectomy, on a second day. This meant we knew on Friday she would have a mastectomy on Monday, a weekend together, scared, anxious, frightened. Shirley was confronting her death and the imminent loss of a part of her womanhood. I was clueless, at a loss, overwhelmed and scared. I didn't know what to do, how to act or what to say. Louise was an American Cancer Society Reach to

Recovery volunteer devoted to helping other women face breast cancer diagnosis and treatment. She was a good friend. When I asked her what to do feeling as helpless and overwhelmed as I was, she said simply: "Tell her you love her." I was off to the races. I spent that weekend saying those three magic, powerful words over and over, as frequently as possible, perhaps more than I had done in weeks, months or years previously. A year or so later on a television talk show featuring three women who had had breast cancer, Shirley reminisced about how verbal I had become that fateful weekend. Those words brought comfort and made a difference. Remember to say: "I love you." It works. And I hope I am as verbal and loving today as I was in the midst of crisis.

2. Say "Yes"

We all know the joke about Moses and the tribes of Israel wandering for 40 years in the desert after their miraculous escape from bondage in Egypt. It took 40 long years to reach the land of milk and honey, the Promised Land. And why, why did it take so long? Moses was a man. He refused to ask for directions. Ten Commandments, maybe; asking for help, never. If you're married or have dated a man for any length of time, you've spent time in a car lost. You suggest, perhaps timidly and quietly, that it might be a good idea to stop and ask for directions. He is offended. He, after all, is a man. He has a good, no, a great sense of direction. That will become apparent to you, a mere woman with no sense of direction, momentarily. The moments tick by. He is becoming exasperated and hitting the gas. Finally, in disgust, he pulls into a gas station and asks for help. It pains him to do so. Louise added another lesson when I was asking what to do knowing that Shirley and I were facing her cancer together, a cancer that we seemed to have faint hope of beating. Her advice was powerful and insightful. When someone, anyone, asks if they can do anything to help, just say "Yes." Friends, family, neighbors, colleagues and others want to be there for you and for themselves. I know, I know. You're a man and never ask for help, not even simple directions. Understand that the people asking to help need your "Yes" as much as you. It gives them some sense of being able to do something positive about this insidious disease that seems beyond their control. Shirley and I were blessed. We did not have to cook a meal for 3-4 months following her surgery thanks to the chicken dishes, casseroles, lasagnas and other assorted goodies constantly flowing through our front door. Needing a brief childcare stint for our daughter, Alison, it was there. Thank you, Greenwich. Thank you in particular First Congregational Church in Old Greenwich. Thank you special friends, particularly Betsy, who taught me I could get through anything, even this. You are a compassionate community. You are a healing church. You are true friends. Your love, prayers and support made a difference for all three of us in our recovery. Ask for help. Say "yes" when it's offered. You'll be better for it.

3. Humor Heals

Norman Cousins taught the country this lesson many years ago and we are often reminded of this truth by Loretta Laroche and others. We know that the act of laughing is itself healing. It makes us feel better and helps us get better. It is very easy to take ourselves and our careers much too seriously. Close friends have experienced our occasional over-the-top, out of control laughing, true guffaws. Can anything feel better? You cannot laugh while feeling sorry for yourself. Seeing the humor in any situation brings relief and release. Did you hear about the drunk who got a "speeding" ticket after passing out at the wheel of his car? Tragedy, yes. Being able to laugh at the incident in hindsight brings understanding and relief. Our favorite apocryphal joke is about hitting a pig, reporting the accident anonymously and getting a ticket in the mail for $500. And how did they find us, you ask, "the pig squealed." Shirley set the stage for our approach to her treatment for breast cancer, which included humor and lots of it. Shirley had met Linda McWhorter, her surgeon's wife, about two weeks before her diagnosis and surgery. On the way in to the operating room for her mastectomy, lying on a gurney in a local community hospital, she looked up and said: "Hey, Phil, you ought to charge me half price. I'm pretty small." Courage, strength, fortitude. A year later, Shirley told the hospital's President & CEO that she was being over charged for her mammogram, that she should get a 50% discount. After all, with one remaining breast, they only had to take a single x-ray image, not two. What's fair is fair. She left him speechless. It just made sense to me. And there was her relationship with her oncologist, Dick Hollister, and his incredible staff. Do you realize that over 95% of cancer treatment takes place in physicians' private office, not in hospitals. If you choose to practice in oncology, you know from the get go that at least 50% of your patients will die. Yet Dick and his staff always provided hope, comfort, and, best of all, laughter and humor. Dick had made the choice to become a doctor and treat patients with cancer at age 13 according to his mother, at age 11 according to him. He was the perfect match for Shirley, who turned him bright red (fairly easy given his red-head's freckled complexion), when she whipped out her temporary breast prosthesis during his first visit to her hospital room. He was speechless. He knew he had a live one, despite the poor prognosis. Shirley was an interesting and challenging case for a new oncologist in his first few years of practice. Jokes were a staple in his office during the course of our year of treatment. Humor is healing to body, mind, and spirit.

4. I love you, not your breasts

Despite our nation's growing obesity, we are a breast and body image fixated society, from Betty Grable pinups in World War II, Marilyn Monroe and Jane Mansfield in the 1950's and 1960's to Salma Hayek, Paris Hilton and Pamela Anderson today. Men talk about being "leg men" or "breast men" with bravado and sophomoric stupidity, as if large breasts or great legs have anything to do with being a woman, a lifetime companion, and a long-term, intimate lover. Now, don't get me wrong. I love to look at and admire beautiful women from the gorgeous 76-year-old former model taking my smoking cessation class in 1982 to the stars on screen and women around me today. However, it is my bride, my lover, and my lifetime partner who is my sexual and sensual interest today. Your bride, your lover, your wife needs to know that you love who she is, not what type of body she has or the size of her breasts. Shirley is as beautiful and sexy today as she was on our first date, if not more so. Our love making then and today was not and is not hampered by her having one breast instead of two. Rather, it enriches our intimacy. When we make love, she completes me, makes me whole and alive. God created a matching set that fits together nicely. Your bride needs reassurance in the face of an assault on her femininity and sense of womanhood. She needs to know by what you say and what you do that this set of circumstances is not the end of your sex life, but rather a new, sometimes frightening, and exciting sex life with heightened sensitivity and caring.

5. Go to her appointments

Go to the multitude of appointments with your wife, your partner, as much as you can, holding her hand literally and figuratively. I had the luxury and blessing of relative independence in my job as the CEO of a community health and wellness center. I built my professional and community calendar around Shirley's treatment schedule. I went with Shirley to virtually every physician visit, every chemotherapy appointment. I felt a bit guilty about sitting in the waiting room, not going into the exam room with her for the actual treatments. Perhaps a bit of a wimp or squeamish, but I was with her in mind, body and spirit every step of the way. If it were possible, I would have taken it for her, and traded places with her. It is not what you do when you accompany her to treatment, but rather the act itself that speaks volumes to her. It also gives you some sense of empowerment. You are more than a helpless spectator cursing the damned disease. You have joined the battle. You are helping wrest control from the cancer along with your wife, your family and friends, your treatment team and all of the support system around you. There is also a practical side. Hearing a diagnosis of cancer overwhelms the senses.

Doctors try to help you understand, but their daily jargon, the language of medicine, might as well be classical Greek or Latin. With two of you there, there are two sets of ears to hear what is said. There are two mouths to ask questions. This helps avoid the tendency to hear what you want to hear. Being with her each time will reassure her, help her overcome, and make you feel good about yourself. She'll love you for it.

6. She is not an invalid

Your wife or partner is not fragile. She won't break. Treatment can be grueling and tiring, but you both need to live your life as fully aspossible. Continue to enjoy what you enjoy individually and as a couple, particularly the latter. One of our best friends and an inspiration for many jogged to her chemotherapy appointments when battling a recurrence of breast cancer. It is called zest for living, being in the now. Let your bride do anything she is up to trying. In Shirley's case over the course of her year of treatment, that included walks at Greenwich Point, skiing, putting up with some golf with me, puttering with flowers, and even on occasion agreeing to go sailing with me. You need to take your cues from her. She knows what she can do, or how tired she may be feeling, whether it's a good day or not. When she's ready, encourage and support her without pushing her. Get out when she's ready. As I reflect, it was important for Shirley and I to live life fully as a couple and as a family with Alison. We knew our time together here might be very short and we wanted to live our life together fully. We did not anticipate the length of life we've been blessed with together. Shirley is a miracle and so is your wife or partner, no matter what the ultimate outcome.

7. Sex After Breast Cancer

This is another place where a man needs to let his partner lead. She will let you know what works now and what doesn't, what she's ready for, and what she's not. I suppose I mourned the loss of her breast as she did, as well as the change in some aspects of love making that result. The important thing to learn is that life goes on and sex goes on. In the first weeks, months and even years, your sex life may take on an added dimension that is simultaneously painful and exquisite. Imagine how it feels to make love to someone you feel you might lose. You don't want to hurt her. Remember, she is not fragile. You can giver her bear hugs both during and outside your lovemaking.

Shirley found a new gynecologist as she went through treatment, Ed Jacobson, a warm man, the kind of physician whose presence and demeanor is comforting and reassuring by nature. He enriched our lives, specifically our sex lives, by suggesting we try jellies and creams to make intercourse easier and more comfortable. When your partner experiences menopause, whether naturally as she ages, or, as in Shirley's case, early menopause brought on at age 37 by chemotherapy and hormone therapy, there are issues to be addressed. This includes hot flashes, vaginal dryness, pain during intercourse, lack of lubrication, lowered libido. In explaining the use of jellies and creams to Shirley during an office visit, Ed described it as "the stuff used by the prostitutes in Stamford." Sounded like good advice to her and to me. And, by the way, it does work. There is sex after mastectomy, wonderful, beautiful, glorious sex. And, in the beginning, it can be simultaneously exquisite and painful. There is nothing that can quite prepare a man for making love, and having intercourse, with the love of his life who he fears losing. The threat hung over our heads and was part of our thoughts for days, months and years. Shirley would be embarrassed were I to say any more about our sex life. It is intimate and remains a joy. I have spoken on this subject to women's groups and social workers. Most rewarding was being part of a panel in Stamford, Connecticut with a professional sex therapist speaking ahead of me. I listened attentively and was pleased to find that Shirley and I had figured out on our own what she described in theory. She was a theoretician explaining the principles underlying sexuality and the impact of breast surgery and cancer treatment. Shirley and I had lived it and muddled through on our own just fine, thank you.

8. She is your trophy wife

You need to understand that your bride, your wife, the woman you promised to cherish, the love of your life and your best friend is also the answer to your caricature male mid-life crisis. The answer is not a young intern wearing a thong who's young enough to be your daughter. It is not a young bimbo or young colleague with whom to start your next marriage, or your next family. It is not a sports car, a speedboat or a new set of golf clubs. It is your wife.I encountered this attitude and understanding observing the marriage of friends Joe and Shirley, two "adolescents in love" after more than 40 years of marriage. Rather than have a midlife crisis alternative relationship, whether sexual or emotional, how about a fling with your wife. Take her away for a comfy weekend at a romantic bed and breakfast. In our case, it can be some quiet time together in the Berkshires, preferably paddling a canoe. Or take in a Broadway show, or a good movie and an after show dessert. Fall in love. Stay in love. Be in love.

9. Lemonade from lemons

When life gives you lemons, make lemonade. See the silver lining. You are not a Pollyanna to find something exquisite, profound and meaningful in facing cancer, facing death and facing loss. Can you imagine yourself in the shoes or the psyche of a person with cancer? Or as the husband, lover and lifetime partner of a woman with breast cancer? Can you understand deep in your soul what intimacy is like, sexual and otherwise, when all your senses are stretched and heightened by the knowledge you're making love to a woman you could lose? You find joy to the point of pain. You discover a profound sense of being one with each other, and yet there is awareness that it could be fleeting and transitory. Reality may break in and shatter the moment, but you persevere. I have often said in the years since "our" treatment for Shirley's breast cancer that a good marriage, or a solid relationship, will not only get through the trauma of breast cancer, the marriage will be strengthened and be the better for it. Go figure.

10. She is not damaged goods

A man attending a prostate cancer support group expressed concern about being "damaged goods" following prostate cancer treatment. Your bride is not damaged goods with or without breast reconstruction. She remains the woman you fell in love with, the woman you committed to for a lifetime together. Get beyond the inner thoughts never expressed, wondering whether your lovemaking was altered forever. You, too, may miss her breast, as it has brought you both pleasure in the past. Whether or not to have breast reconstruction is a personal choice, her choice. Shirley chose not to do so, in part I believe to avoid furthering tampering with and "awakening" of any missed cancer cells. Now is the time to live your life to its fullest together. Cleave to her. Hold her. Love her. Smell her. Taste her. Smile with her. Laugh with her. Cry with her. Get angry with her. Yes, you still have "negative" feelings and emotions. You are still human beings in the ebb and flow of a love relationship that is more intense than most of those around you. You'll both survive and thrive if you stay together.

Peter J. Flierl, M.S.W. is a graduate of Hobart College in Geneva, New York with a B.A. in English and completed his Masters in Clinical Social Work at Louisiana State University School of Social Welfare in Baton Rouge, Louisiana. He is a freelance writer and speaker with more than 30 years experience in community and hospital-based wellness and alternative medicine and is the author of Prayer, Laughter & Broccoli .

Provided by the Y-ME National Breast Cancer Organization.

Source: CarePage

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Breast Cancer in a Wife, How Husbands Cope and How Well It Works

Silvia M. Bigatti, PhD; Linda F. Brown, MS; Jennifer L. Steiner, MS; Kathy D. Miller, MD 

DISCLOSURES

Cancer Nurs. 2011;34(3):193-201.

 

Abstract and Introduction

Abstract

Background: Husbands of patients with breast cancer (HBCs) experience as much as or even more distress than patients. Husbands' coping strategies may predict their level of distress.

Objective: The present study examined the coping strategies of HBCs compared with husbands of women without cancer (HWCs) and the relationship between coping and various psychosocial variables.

Methods: Psychosocial and physical health correlates of coping in both groups were assessed. Husbands of women with breast cancer (n = 83) and without breast cancer (n = 79) completed self-report questionnaires including the Ways of Coping Questionnaire, the Center for Epidemiological Studies Depression Scale, the Subjective Stress Scale, the Satisfaction With Life Scale, and the Locke-Wallace Marital Adjustment Test, in addition to measures of burden.

Results: The HBC and HWC groups were significantly different for 6 of the 8 coping styles assessed, with HBC using these strategies less than HWCs. Among HBCs, higher use of distancing, accepting responsibility, and escape-avoidance was associated with higher stress and symptoms of depression, and distancing and accepting responsibility were associated with lower marital satisfaction.

Conclusions: Results suggest that coping strategies may be different when dealing with cancer in a wife than at other times and that coping relates to well-being and is therefore worthy of focus.

Implications for Practice: Simple assessments of primary coping strategies may help clinicians identify HBCs in need of interventions. Husbands of women with breast cancer can be given problems to solve that will help them cope and help the patient and clinic staff as well. Interventions aimed at the couple, and not exclusively the HBC, may be particularly helpful.

Introduction

In the cancer care arena, increasing emphasis is being directed at attending to the psychosocial needs of patients and their families. Family members are sometimes considered "second-order patients," as high stress levels in caregivers can interfere with their ability to provide support to the cancer patient.[1] In this environment, husbands of breast cancer patients (HBCs) are receiving more and more attention from researchers as the negative impact of the cancer on their well-being is recognized. Distress among HBCs is as high as the patient's or higher,[2]because of the cancer. Compared with husbands of women without illness, HBCs report worse physical and mental health regardless of the severity of the cancer.[3] Wagner et al[3] found among HBCs that the coping style they used was related to overall quality of life.

Coping is an important variable to examine because it traditionally has been conceptualized as a mediator between a stressor (in this case, breast cancer in a wife) and outcome (physical or mental deterioration). As such, it exercises quite a bit of influence over whether the stressor will result in negative outcomes for any one individual.

Coping has been defined as "…constantly changing cognitive and behavioral efforts to manage specific external and/or internal demands that are appraised as taxing or exceeding the resources of the person."[4]It can serve several functions. Coping may prevent a stressful situation, help manage the situation, manage the meaning of the situation, or manage the stress symptoms associated with the situation. Husbands of women with breast cancer will need to use their repertoire of coping skills to manage their involvement in the cancer patients' illness and care, manage the meaning of the chronic illness for their families, and manage the stress symptoms associated with it.[5]

To help manage the situation in the breast cancer context, HBCs may use problem-solving strategies to reduce the burden associated with the illness.[5] Lazarus and Folkman[4] characterized such strategies as problem-focused coping. For example, an HBC may actively participate in discussions with health care providers to ensure that effective medications are prescribed for the patient. Husbands of women with breast cancer also may use other forms of problem-focused coping to help manage their own stress associated with the patients' chronic illness, resulting in less negative outcomes.[5] These strategies tend to be directed at internal processes.[4] Common strategies include finding time to take care of one's own needs and the use of stress management techniques.

Another style of coping used by HBCs can be characterized as emotion focused.[4] The meaning HBCs attribute to their wives' illness and to their own role in helping the patient cope with it will determine how stressful it becomes for them.[5] Husbands of women with breast cancer who use coping strategies that make the situation seem less threatening, such as cognitive reappraisal, avoidance, or denial, may feel less stress/burden than those who view the patients' illness as unbearable. Emotion-focused coping may be used "…to maintain hope and optimism, to deny both fact and implication, to refuse to acknowledge the worst, to act as if what happened did not matter…."[4] Examples of such coping strategies are the use of humor and remembering the relationship before the onset of the breast cancer, rather than focusing on the possibility that increased deterioration of the patient will continue to occur.

Lazarus and Folkman[4] identify 3 possible ways in which coping can mediate the relationship between stress and poor health. First, coping influences neurochemical stress reactions. For example, research has shown that at different levels of perceived stress, coping is associated with different immune function responses.[6] Second, when coping efforts used to deal with stress are noxious to the individual, such as using drugs or alcohol, individuals' health may suffer. Finally, sometimes the use of emotion-focused coping, which may involve denial or avoidance, prevents the individual from searching for solutions to a solvable problem and, as a result, becomes a counterproductive style.

A small but important literature examines coping strategies among HBCs-typically within the context of the dyadic relationship. The usual approach is to compare HBCs coping with patient coping and examine the effects of one on the other. This literature suggests that HBCs use fewer coping strategies than their wives and that their coping is mostly problem focused,[7] although to a lesser degree than the patient's/wife's.[8]Findings from this literature support general coping research in that coping style is associated with psychological functioning. For example, Kershaw et al[9] found that avoidance coping in caregivers of breast cancer patients was associated with lower mental quality of life to a larger degree than any other strategy examined. Ptacek et al[7] found problem-focused coping to be associated with higher marital satisfaction and emotion-focused coping to be associated with lower marital satisfaction.

These findings are significant because HBC coping styles have been associated with outcomes in the wives/patients. Problem-focused coping in the HBCs has been associated with higher marital satisfaction in the wife/patient,[7] whereas emotion-focused coping in the HBCs is associated with distress in the patient.[8]

No reports have yet been published, however, that describe in detail the coping strategies of HBCs, especially when compared with husbands of women without illness. Such data would allow us to further understand to what extent HBCs draw on their coping resources in the context of their wives' breast cancer, whether such coping strategies are effective, and, if so, which work best. Comparing the coping of HBCs with that of husbands of women who are not ill will allow us to identify differences in coping strategies between the groups. The findings may also shed light on the significance of the research that explains the impact of HBC coping on patient outcomes, as it would provide us with a snapshot of whether their coping in this situation is similar to their general coping style or whether coping gets blunted or changed in some way that is unique to this stressor. Finally, a clear understanding of how coping in these men is different from coping in men without this stressor may suggest avenues for interventions aimed at maximizing coping resources for this population.

The purpose of the present study was to examine in detail the coping strategies used by HBCs and to compare their strategies with those of husbands whose wives are not ill. Psychosocial and physical health correlates of coping in both groups were also examined, as was the relation between HBC coping and wife/patient illness variables.

Methods

Participants

A total of 212 married or partnered men were recruited for the present study. Of the 101 HBCs recruited, 18 failed to return their questionnaires, leaving a final sample of 83 HBCs. Of the 110 husbands of women without chronic or acute illness recruited for the comparison group, 11 failed to return their questionnaires. Of the remaining 99 participants, 20 were younger than the youngest in the HBC group. These were dropped so that the groups would be matched on age, leaving a final sample of 79 husbands of women without illness.

 

Most husbands in the study were white (91.8%), with an average age of 50 (SD, 12.56) years. Most were college graduates (54%) and employed full-time (64.8%), and a significant proportion of participants (41.6%) earned an income of more than $70 000. There were no statistically significant differences by group on any of these variables. Table 1 presents the demographic data by group.

Wives with Breast Cancer

Descriptive information was provided on the wife's breast cancer because it is the factor that distinguishes the HBCs from the comparison husbands. The average time since diagnosis was 34 months (median, 15 months; mode, 4 months). Wives were at all stages of disease; specifically, 20% had stage I, 35% stage II, 20% stage III, and 17% stage IV. Eight percent of the husbands were not able to report stage of illness for their wives. Most wives had surgery (77% had either lumpectomy or mastectomy, and 14.5% had both), and most had started their adjuvant treatments (48.8% had either radiation, chemotherapy, or hormone therapy; 30.5% had 2 of these; and 18.3% had all 3). Most HBCs (83%) reported that their wives were currently affected by treatment adverse effects. The most commonly reported adverse effects were fatigue (46%), nausea (36%), pain (28%), and hair loss (23%). Only 36% of the wives who worked prior to the diagnosis continued to work without interruption; for the remainder, husbands reported either that their wives had work-related disability (29%), reduction in work hours (27%), or that they had stopped working completely (8%).

 

Procedure

Husbands of women with breast cancer were recruited through a regional cancer center after approval was granted by the center's Scientific Review Committee and the university institutional review board. Research assistants (RAs) approached HBCs in the chemotherapy infusion area before or during treatment. The RAs fully described the study to them, and those who consented were provided survey packets to complete at home and return via mail. No HBCs approached for participation refused, although 18% never returned their questionnaires.

 

Participants in the comparison group were recruited through campus advertisements and e-mails. The men in the comparison group were spouses of women who had never been diagnosed with breast cancer and who had no chronic or life-threatening illnesses. These husbands called the research office to provide informed consent before surveys were mailed to their homes. Husbands who failed to return their packets within 2 weeks received reminder telephone calls by trained RAs. Research assistants reviewed all returned surveys and called the participants to collect missing data. Once the surveys were returned, participants were sent $30 grocery gift certificates. Data were entered and double-checked by trained RAs.

 

Measures

Demographic Characteristics—Project Questionnaire This instrument was developed by project personnel and used to obtain demographic information and information on the patient's cancer and treatment.

 

Coping—Ways of Coping Questionnaire Coping strategies were measured using the Ways of Coping Questionnaire.[10] The measure has 66 items that assess the thoughts and actions of individuals as they cope. Items are grouped into 8 subscales-four of which make up the problem-focused coping scale and 4 make up the emotion-focused coping scale. The problem-focused subscales are planful problem solving, seeking social support, accepting responsibility, and confrontive coping. The emotion-focused coping scale is made up of positive reappraisal, escape-avoidance, distancing, and self-controlling. Higher scores indicate more frequent use of that coping style. Brief explanations of each subscale are presented in Table 2. The Ways of Coping Questionnaire has internal consistency reliabilities ranging from α = .61 to α = .79. Construct validity has been supported by consistency with theoretical predictions.[12]Internal consistency was estimated with the sample used for the present study and found to be α = .83 for emotion-focused coping and α = .84 for problem-focused coping.

Depression—Center for Epidemiological Studies Depression Scale The Center for Epidemiological Studies Depression Scale was designed to measure depressive symptoms, with an emphasis on depressed mood.[13] This 20-item self-report instrument has been used extensively in the health literature. Responses are given on a 4-point Likert-type scale (0 = rarely or none of the time to 3 = most or all of the time). The scale distinguishes between various levels of problem severity. Reliability has been reported at α = .88. Internal consistency was estimated with the sample used for the present study and found to be α = .89.

 

Subjective Stress Scale This short 4-item scale was developed by Chapman et al[14] for the Los Angeles Heart Study. Responses are chosen from a 4-point Likert-type scale (1 = this does not describe me at all to 4 = this describes me very well). Items in this scale have been found to correlate with social stress (r = 0.32) and neuroticism (r = 0.42).[15] Stress scores from the scale have been reported to be relatively stable over time.[16] Internal consistency was estimated with the sample used for the present study and found to be α = .83.

Satisfaction with Life Scale This short (5-item) instrument developed by Diener et al[17] is designed to measure quality of life from the point of view of the individual. Responses are given on a 7-point Likert-type scale (1 = strongly disagree to 7 = strongly agree). Internal consistency was reported by the authors at α = .87, test-retest reliability at α = .82, and concurrent validity as appropriate. Internal consistency was estimated with the sample used in the present study and found to be α = .88.

Marital Satisfaction—Locke-Wallace Marital Adjustment Test Created by Locke and Wallace,[18] this 15-item self-report instrument is widely used in the caregiver and chronic illness literature to measure marital adjustment. The authors report a split-half reliability of α = .90. The authors also claim good validity, with the instrument discriminating between adjusted and maladjusted couples. Internal consistency was estimated with the sample used for the present study and found to be α = .70.

Burden

Activities of Daily Living—Illness Impact Form. Designed by Gallo and reported in Sexton and Munro,[19] this instrument measures how much the patient depends on the spouse for activities of daily living (ADLs) and instrumental ADLs (IADLs). The measure was adapted for use with the specific population in the present study. It contains a list of ADLs and IADLs and asks how much the patient depends on the respondent for those activities on a 4-point Likert scale (0 = never, 1 = sometimes, 2 = most times, 3 = always) specifically because of the breast cancer. Internal consistency was estimated with a sample of husbands of patients with fibromyalgia and found to be α = .83.[20] Internal consistency in the present sample was α = .81.

Role Strains—Psychological Adjustment to Illness Scale. The self-report version developed for spouses of patients was used.[21] This 46-item measure assesses role strains and the psychological and social adjustment of spouses to illness. It includes 7 domains, of which 5 were used for the measurement of burden in the present study: vocational, domestic, and social environments and sexual and extended family relationships. Reliability coefficients range from a high of 0.87 for domestic environment to a low of 0.66 for extended family. The measure correlates highly with other measures of psychological adjustment to illness, such as Global Adjustment to Illness Scale (r = 0.81).[21] Internal consistency for the total of the 5 role strains in the present sample was α = .54.

Cancer Stage. Husbands of women with breast cancer were asked to report the stage of their wives' cancer.

Cancer Symptoms. Husbands of women with breast cancer were asked to report the symptoms of the cancer and treatment adverse effects experienced by their wives/partners.

Cancer Treatments Received. Husbands of women with breast cancer reported on the treatments received by their wives/partners, including type of surgery and type of adjuvant therapy.

Results

Burden of Breast Cancer for HBCs

Husbands of women with breast cancer were involved in providing care for their wives associated with the breast cancer in ADLs such as dressing (37%), eating (31%), bathing (21%), using the toilet (12%), and even walking in the house (7%). For IADLs, HBCs reported that because of the breast cancer they helped their wives with shopping (66%), trips outside (42%), taking medicine (46%), managing finances (49%), and organizing appointments (41%). Husbands of women with breast cancer reported varying amounts of role strain, with the highest being in the social environment, followed by sexual, vocational, domestic, and extended family relations.

 

Relationship Between Burden and Coping in HBCs

To better understand the relationship between the burden of breast cancer and the HBC coping style, we regressed each coping subscale on role strains, ADL, number of symptoms of chemotherapy experienced by wife, number of treatments (surgeries and adjuvant treatments) undergone by wife, and cancer stage.

 

The regressions for distancing, self-controlling, seeking social support, accepting responsibility, and positive reappraisal were not significant, suggesting no relationship between illness burden and these coping styles.

The regression for confrontive coping was significant, F 5,57 = 2.56, P = .037, and accounted for 18.3% of the variance. Only role-strain scores entered the regression equation (β = .333) and showed that higher confrontive coping was associated with higher role strains.

The regression for escape-avoidance was significant, F 5,57 = 3.48, P = .008, and accounted for 23.4% of the variance. None of the individual predictors accounted for significant proportions of variance.

The regression for planful problem solving was significant, F 5,57 = 2.95, P = .020, and accounted for 20.5% of the variance. Role strains (β = .305) and wife's cancer stage (β = −.332) entered the regression equation, with higher role strains and lower stage associated with higher use of planful problem solving.

Differences in Coping Between Groups

A multivariate analysis of variance was conducted to compare HBCs with the comparison group on the 8 subscales of the Ways of Coping Scale. The multivariate test was significant, F 8,146 = 9.441, P < .001, multivariate effect size = 0.341. Univariate follow-up tests showed that confrontive coping (partial ŋ2 = 0.054), distancing (partial ŋ2 = 0.030), self-controlling (partial ŋ2 = 0.058), seeking social support (partial ŋ2 = 0.112), accepting responsibility (partial ŋ2 = 0.157), and planful problem solving (partial ŋ2 = 0.137) differed significantly between groups (Table 3). For each of these coping styles, HBCs used the style less than comparison husbands. There were no differences between groups in escape-avoidance or positive reappraisal.

 

A second comparison was conducted examining groups by emotion-focused and problem-focused coping. The multivariate test was significant, F 2,152 = 21.56, P < .001, multivariate effect size = 0.221. Univariate follow-up tests showed problem-focused coping differed significantly between groups (partial ŋ2 = 0.196). Husbands of women with breast cancer used problem-focused coping less than comparison husbands; but emotion-focused coping did not differ (Table 3).

Paired-samples t tests were run to examine differences between emotion-focused and problem-focused coping within each group. For both groups, the differences between the 2 coping styles were statistically significant. Husbands of women with breast cancer, t 78 = 7.91, P < .001, and husbands of women without illness, t 75 = 2.33, P = .023, used emotion-focused coping more than problem-focused coping strategies.

Differences in Psychological Health of HBCs by Coping Style

In an effort to understand the relationships between the various coping styles and psychological health (satisfaction with life, subjective stress, depression, marital satisfaction) among HBCs (not comparisons), we compared HBCs who scored high on each subscale with those who scored low using multivariate analysis of variance. High versus low was determined by a median split of the scores for each subscale. There were no differences in psychological variables between HBCs by confrontive coping (high scores >5), seeking social support (high scores >7), self-controlling (high scores >10), or planful problem solving (high scores >9). Husbands of women with breast cancer who scored high (scores >6) on distancing reported worse psychological health than those who scored low, F 4,68 = 3.01, P = .024, ŋ2 = 0.150. Univariate follow-up tests showed that high distancing was associated with higher subjective stress (ŋ2 = 0.075), more symptoms of depression (ŋ2 = 0.071), and lower marital satisfaction (ŋ2 = 0.069) than was low distancing (Table 4).

 

Husbands of women with breast cancer who scored high (>4) on accepting responsibility reported worse psychological health than those who scored low, F 4,68 = 5.69, P = .001, ŋ2 = 0.251. Univariate follow-up tests showed that high accepting responsibility was associated with lower satisfaction with life (ŋ2 = 0.079), higher subjective stress (ŋ2 = 0.106), more symptoms of depression (ŋ2 = 0.158), and lower marital satisfaction (ŋ2 = 0.094) than low accepting responsibility (Table 4).

Husbands of women with breast cancer who scored high (>5) on escape-avoidance reported worse psychological health than those who scored low, F 4,68 = 3.28, P = .016, ŋ2 = 0.162. Univariate follow-up tests showed that high escape-avoidance was associated with higher subjective stress (ŋ2 = 0.099) and more symptoms of depression (ŋ2 = 0.129) than low escape-avoidance (Table 5).

Husbands of women with breast cancer differed on psychological health by their use of positive reappraisal, F 4,68 = 5.11, P = .001, ŋ2 = 0.231. Univariate follow-up tests showed that high positive reappraisal (>10) was associated with higher marital satisfaction (ŋ2 = 0.070) but also higher subjective stress (ŋ2 = 0.126) than low positive appraisal (Table 4).

Table 5 summarizes findings across groups and within HBCs for coping. The 2 main scales (problem- and emotion-focused coping) and the various subscales are represented in this table, which shows the significant relationships between coping and psychosocial factors and differences by group in coping style.

Discussion

We sought to develop a deeper understanding of coping among HBCs. Husbands of women with breast cancer in the present study were mostly white and educated and reported relatively high socioeconomic status. According to their own reports, a substantial proportion provided their wives with significant help in ADLs such as dressing and eating and instrumental ADLs such as shopping and taking medicine, because of the breast cancer. They also reported role strains associated with their wives' illness, with the highest in the social environment. This is not surprising because the majority of wives had undergone surgery for their breast cancer, and all but 2 had begun adjuvant (ie, radiation, chemotherapy) treatment.

 

Within the subscales of the Ways of Coping Questionnaire, HBCs used positive reappraisal most, followed by planful problem solving, self-controlling, seeking social support, distancing, confrontive, accepting responsibility, and, finally, escape-avoidance coping. These findings are partially consistent with previous research. Ptacek et al[7] used an earlier version of the Ways of Coping Questionnaire that had only 5 subscales, precluding the ability to make a direct comparison. They found that HBCs reported using problem-focused coping most and self-blame (comparable to our "accepting responsibility") least. Although our findings do not match those of the previous study entirely, they are not contradictory.

When we examined coping strategies further, we found that HBCs used emotion-focused coping strategies to a larger extent than they used problem-focused coping strategies. However, both HBCs and comparisons used emotion-focused coping more than problem-focused coping, so this difference is not unique to HBCs. Additionally, although both groups used emotion-focused coping more than problem-focused coping, our findings indicated that HBCs used problem-focused coping less than comparisons. Previous research has suggested that in situations in which the perceived potential for control over the stressor is higher, there is greater likelihood of using problem-focused coping as there is a higher chance of this strategy being effective in changing the outcome of the stressor.[4] It is possible that the HBCs used less problem-focused coping because of the limited potential for control in dealing with their partners' cancer. Under situations such as this, it is not surprising that problem-focused coping would be less prevalent in comparison to emotion-focused strategies and also in comparison to controls who may be coping with situations with greater potential for effective problem solving.

Of note is that the most- and least-used coping strategies (positive reappraisal and escape-avoidance, both emotion focused) were the only ones in which HBCs did not differ from husbands of women without illness. Previous research has suggested that men have certain patterns of coping with stressors within a marriage that are related to both their marital satisfaction and the satisfaction of their partner,[22] and this may be related to commonalities between groups despite the stressful situation. Bouchard and colleagues[22] found that individuals' use of denial as a coping style was associated with negative marital satisfaction for both themselves and their spouses and that distancing-avoidance was associated with their own negative satisfaction with the marriage. In that particular study, distancing-avoidance behaviors were described as "efforts to detach… and behavioral efforts to escape or avoid the problems,"[22] which is essentially the same strategy that what we have identified as escape-avoidance. It is possible that men in general practice escape-avoidance at lower rates because it leads to negative feelings and lower satisfaction on their part. This may provide some explanation for the low use of escape-avoidance in both groups.

Husbands of women with breast cancer reported using all other strategies less than comparison husbands. These findings may suggest a suppression of coping behaviors at the time of active treatment in the wife. Lazarus and Folkman[4] posited that either personal or environmental factors can lead to constraints to coping behaviors. Ptacek et al[7] compared the coping of patients with breast cancer with their husbands' coping and found that the patients reported more use of coping than did the husbands, a finding that seems to support the current findings of suppressed coping in these men. However, Ptacek et al,[7] as well as Ben-Zur et al,[8] found that HBCs in their samples used more problem-focused coping than emotion-focused coping, a finding different than our own. These inconsistent findings may be at least partially explained by differences in the samples. Our sample included patients in active treatment and with all stages of cancer (37% identified as stage III or IV), whereas the previous studies' samples were mostly limited to stages I and II breast cancer (100% in the Ben-Zur et al[8] sample and 86% in the Ptacek et al[8] study). In the study by Ptacek and colleagues,[7]patients had completed treatment an average of 15 months earlier. Many of our HBCs were in the throes of coping with the stress of their wives' active treatment and the concurrent adverse effects. More than a third were dealing with advanced stages of cancer, which may have been appraised as more of a threat. Problem-focused coping is less likely to occur, as noted earlier, when there is less potential for influencing a situation and also when the perceived threat is greater.[4] Excessive threat interferes with problem solving by affecting cognitive functioning and information processing. It is possible that higher degrees of perceived threat and lower perceived potential to influence the problem led to lower use of problem-focused coping in our sample.

We then focused exclusively on the HBCs and attempted to elucidate the relationships between coping and HBCs' mental health-their satisfaction with life, subjective stress, depression, and marital satisfaction. Our findings suggest that higher use of distancing, accepting responsibility (ie, self-blame), and escape-avoidance is associated with higher stress and more symptoms of depression than lower use. Higher use of distancing and accepting responsibility is also associated with lower marital satisfaction than lower use. Especially noteworthy is the difference in depression scores among those who score lower and higher in accepting responsibility, because lower users of accepting responsibility were within the reference range for the measure of depression (ie, nondepressed) and higher users of accepting responsibility scored within the depressed range. These findings are somewhat similar to those of Ptacek and colleagues,[7] who found that an HBC's use of avoidance and/or self-blame was negatively correlated with his marital satisfaction and mental health. Unfortunately, the cross-sectional nature of our data does not allow us to determine whether the coping causes the lower scores on these psychosocial measures or the lower scores on these measures lead to these types of coping, or even whether this is an interactional process. The literature provides sufficient evidence for both alternatives.[23,24]

Positive reappraisal, which is considered an adaptive emotion-focused coping style, was associated with higher marital satisfaction but also higher reported levels of subjective stress. Husbands who perceive higher levels of stress may add positive reappraisal to their coping repertoire in an effort to cope.

Because the factor that distinguishes HBCs from other husbands is the illness in the wife and its associated burden, we examined whether burden was associated with coping style. We conceptualized burden as wife illness characteristics (cancer stage, treatments received, and associated symptoms), wife need for assistance in ADLs, and HBC role strains. Burden was associated with the use of confrontive coping and planful problem solving through role strains and cancer stage; burden was also associated with escape-avoidance coping.

In summary, although HBCs showed restrained coping compared with husbands of women without illness, their various coping styles were related to a number of psychosocial and disease variables. The coping styles that were not related to any of these variables were seeking social support (a problem-focused style) and self-controlling (an emotion-focused style). Most, though, were related to negative psychosocial factors in HBCs (confrontive, accepting responsibility, planful problem solving, distancing, escape-avoidance, and positive reappraisals). Only positive reappraisal, the coping style used most by HBCs, had a positive association; HBCs with higher use of problem-focused coping reported higher marital satisfaction.

The main limitation of the present study is its cross-sectional design, which precludes conclusions about causal relationships. In all the relationships examined in this article, coping style may explain psychological factors, or psychological factors and disease variables may explain coping style. Moreover, a cross-sectional design does not allow the evaluation of changes in coping across time. Pearlin and colleagues[5] classify coping as fluid (ie, changing over time), especially when stressors are chronic. For HBCs, breast cancer may become a long-term stressor, and individuals may need to change and refine their coping repertoires to deal better with the stressor. Throughout the illness, coping may serve to mediate the effects of burden on HBCs' physical health. Husbands of women with breast cancer may try different coping styles throughout the breast cancer experience and determine that different styles are effective at different phases of the illness and its treatment. Future longitudinal research would add to our understanding of HBC coping with the breast cancer experience across time. Another limitation is the homogeneous demographic characteristics of these husbands. These findings cannot be assumed to generalize to men who have lower income or are nonwhite. Qualitative follow-up interviews might have clarified some of the questions that were elicited by our findings. Future research with mixed-methods designs may better determine the meaning of the relationships among variables found here.

Our findings have immediate implications for clinical practice. It is clear from the literature that husbands of patients need attention from clinical staff. Our findings suggest that targeting their coping style may help reduce their distress. A simple strategy for identifying husbands who may need help with coping would be to assess their primary coping style. A single question, such as "what are you doing to deal with her cancer (or treatment, surgery, symptoms, whatever may be most relevant)," may provide information useful to the clinician to identify effective or ineffective coping styles. Husbands who report using problematic coping styles, as identified in the present study, could be singled out for attention by clinic staff. Distressed husbands who report attempts to solve problems could be given tasks to do or problems to solve, such as implementing household schedules, managing patient medication, or keeping records of events and symptoms. Alternatively, clinic staff can work with both the husbands and patients. There are interventions aimed at coping specifically, such as Couples Coping Enhancement Training,[25]which have been found to reduce or prevent distress in couples. However, these have yet to be tried, in a modified format, for those facing the stress of cancer. Clinicians can also help husbands understand the important role they play during the cancer treatment. Research has shown that husbands, in fact, do problem solve at this time. They take on additional household chores and take care of patient and family needs that they may not usually be responsible for.[26] Making husbands aware of this and helping them reconceptualize these activities as coping efforts could result in better psychosocial outcomes.

A detailed understanding of coping strategies used by this population and the relationship with mental health is especially important because such knowledge may lead to the development and use of interventions aimed at helping these men. Typically, cancer care professionals strive to help patients and their families actively cope with breast cancer. However, without understanding the coping methods that HBCs use and their associated factors, these interventions will not be properly informed. The present study adds to our understanding the role of coping among this distressed population.

Source:

This project was funded by Walther Cancer Institute, Inc. Cancer Nurs. 2011;34(3):193-201. © 2011 Lippincott Williams & Wilkins

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Experience of spouses of women with breast cancer: an integrative literature review

Rhyquelle Rhibna Neris¹ 

Anna Cláudia Yokoyama dos Anjos²

¹Nursing Undergraduate Student, Faculty of Medicine, Universidade Federal de Uberlândia, Uberlândia, MG, Brazil

²Adjunct Professor, Nursing Undergraduate Course, Faculty of Medicine and Coordinator of the Multidisciplinary Residency Program Attention in Oncology, Universidade Federal de Uberlândia. Uberlândia, MG, Brazil

ABSTRACT

Objective: To gather, to characterize, to analyze, to synthesize and to integrate primary studies that addressed the experiences of spouses / husbands / partners of women with breast cancer, presenting the current state of knowledge. Method: Integrative literature review carried out in the databases of VHL, PubMed, CINHAL e SciELO. Results: The sample consisted of eight studies published between 2000-2012, which pointed to the experiences of the involvement and the care of the husbands towards their ill wives. Conclusion: This study highlights the need for attention and assistance to those spouses, as well as guidance and education to exercise the care the same way as the health staff has done with women. Furthermore, it emphasizes the importance of further studies in order to deepen the knowledge on this topic, and thus, improve the care with better scientific basis.

Key words: Breast neoplasms; Spouses; Family; Family relations; Oncology nursing; Review

RESUMEN

Objetivo: Reunir, caracterizar, analizar, sintetizar e integrar estudios primarios que abordaron las experiencias de los cónyuges/esposos/compañeros de mujeres con cáncer de mama, presentando el estado actual del conocimiento. Método: Revisión integradora de la literatura realizada en las bases de datos BVS, PubMed, CINHAL y SciELO. Resultados: La muestra estuvo compuesta de ocho estudios, publicados en el período de 2000 a 2012, que señalaron las experiencias de la involucración y el cuidado de los maridos con relación a sus esposas enfermas.Conclusión: Se evidencia la necesidad de atención y asistencia a esos cónyuges, así como la orientación y educación para el ejercicio del cuidado, como está realizando el equipo de salud con respecto a las mencionadas mujeres. Se subraya igualmente la importancia de nuevos estudios, a fin de profundizar el conocimiento acerca de esa temática y, de ese modo, perfeccionar la asistencia con mejor fundamento científico.


Palabras-clave: Neoplasias de la mama; Esposos; Familia; Relaciones familiares; Enfermería oncológica; Revisión

INTRODUCTION

Breast cancer is the most common cancer in women and the fifth leading cause of cancer death in general (458,000 deaths). In 2009, deaths from breast cancer ranked first in Brazil with 15.3% of all cases. For the year 2012, 52,680 new cases that represented an incidence rate of 52.5 cases per 100,000 women were estimated⁽¹⁾.

The natural process of diseases like breast cancer interferes greatly and directly in the physical, emotional and social conditions of women, which causes them to fear the disease and all the factors involved in the diagnosis, treatment and rehabilitation process⁽²⁾.

In face of the experiences that affect women with breast cancer, they may have difficulties in social and family relationships. It is amidst this complex scenario that day by day the family has acquired increased importance, with a significant collaborative role for coping with the disease⁽³⁾.

Within the household context, the spouse of the woman with breast cancer is a family member that stands out. They see cancer as a threat to the life of their partners, and like them, may not have sufficient and appropriate emotional resources to cope with the disease⁽⁴⁾, they may feel hopelessness, helplessness, restlessness and fear, among many other possible feelings that affect their own lives, the comfort, support and care to women, as well as the family and emotional relationships⁽⁵⁾. The spouses cannot be excluded from the context of care, on the contrary, they should be seen as people who need to receive assistance, support and to share their doubts, fears, anxieties and uncertainties⁽⁴⁾.

It is often perceived that the care and concern of health professionals who deal with breast cancer are preferentially directed to women affected by cancer. Thus, many times, the relationships of these women with other members of their families, and particularly with their companion go unnoticed⁽⁶⁾.

When experiencing cancer in their wives, the spouses often become fragile. They fear not being able to support and provide proper care, to bear the concrete loss of their women, and to go through the mourning. Amid these new situations, as well as the needs they generate, they are in need of help, requiring their inclusion as a care target by the health services. The same way as women are placed in support groups, these partners should be similarly assisted because it is necessary that they feel supported in their psychosocial needs, empowered and educated about the disease and treatment^(4,7).

Thus, this literature review was proposed aiming at bringing together, characterizing, evaluating and integrating primary studies that examined the experiences of husbands of women with breast cancer. The study presented the current state of knowledge seeking to expand the knowledge and the best scientific basis for the practice of targeted assistance to the partner.

METHOD

It is an integrative review of national and international literature that included the analysis of results of relevant studies that can provide support for decision making and the improvement of clinical practice⁽⁸⁾. The integrative review provides a synthesis of the state of knowledge of a particular theme, in addition to identifying gaps in knowledge that need to be filled with new studies. This research method allows to gather and synthesize multiple published studies, in addition to enabling general conclusions about a particular area of study⁽⁹⁾.

Six steps were used to conduct this integrative review, namely: identification of the theme and formulation of the guiding question; literature search and careful selection of studies; categorization of the studies retrieved; analysis of the studies included; interpretation of results and comparisons to other studies; report of the review and synthesis of knowledge evidenced in the studies⁽¹⁰⁾. In order to meet the study goals, the guiding question was defined: what has been investigated and published in the scientific community about the experiences of spouses of women with breast cancer?

The sample was composed of national and international scientific articles developed by healthcare professionals who investigated the spouses/partners of women with breast cancer. The literature survey was retrieved in the following databases: PUBMED (US National Library of Medicine), CINAHL (Cumulative Index to Nursing and Allied Health Literature), PsycoINFO – database of the American Psychological Association (APA), in the Research Portal of the Virtual Health Library (VHL) and Scientific Electronic Library Online (SciELO).

The searches in the PUBMED, CINAHL, PsycINFO and VHL databases were carried out in May and June 2013, and, in the SciELO database, they were done in February 2014. All the searches were done through the search strategy combination of the Health Sciences Descriptors (DeCS): b reast neoplasms / neoplasias da mama, qualitative research / pesquisa qualitativa, family /família, spouses /cônjuge, and the keyword breast cancer, linked by the Boolean operators AND and OR Chart 1. The PsycINFO database has its own descriptors, but the terms corresponded to the DeCS.

The established inclusion criteria were the following: qualitative primary research, available online, in the format of articles, in Portuguese, English or Spanish, and focused on the experience of spouses of women with breast cancer. The articles not related to the proposed theme that were not full text ones, free and available online in electronic databases, published in languages other than Portuguese, English or Spanish, and quantitative studies, were excluded. Articles repeated in different databases were considered only once. After reading the titles and abstracts of 304 initially retrieved studies, observing the established inclusion and exclusion criteria, a final sample of eight studies was obtained.

An instrument developed and validated by Ursi⁽¹¹⁾ and adapted for this study was used for characterization and data collection related to the methodology and results.

In order to obtain a thorough analysis of the contents of the studies, the information was collected from the complete reading of the eight articles included. First, information was characterized according to the following: database where they were indexed, titles of articles and journals, authors, country, language, year of publication, host institution, professional area of authors, publication design Chart 2. The identification of those studies is arranged in numerical form, thus making their location easy.

Subsequently, the aims, the methodological aspects and results of studies were verified. In Chart 3, the selection and the characterization process of the participants of the studies and the outcomes were presented. Afterwards, the findings of the results in relation to the goals of the studies were analysed and then grouped into themes for discussion.

RESULTS

Chart 1 shows the search strategy combination of the estabilished methodological terms for qualitative research and their results, respecting the use of appropriate terms to the databases.

Chart 1 Results of the search done in the databases, results of studies included and excluded in the review – Uberlândia, MG, 2013 

After carefully observing the focus of the studies and the inclusion and the exclusion criteria of this review, three articles from VHL, one (1) from PUBMED, four from CINAHL, and none from the PsycINFO database were included. The articles from PsicINFO did not meet the goals or were not focused on the study of the husband only. Thus, 16 articles from CINAHL, 181 from VHL, 23 from PUBMED, 75 from PsycINFO and one from the SciELO were excluded from this review, amounting to 296 articles, as shown in Chart 1. An article was selected in the SciELO database, but it had already been selected in VHL, thus the decision was to keep it at the base where it was first found.

Part of the results is presented in Chart 2, which characterizes the studies of this review. The eight articles were published between 2000 and 2012; an interval of time was not established seeking to gather a higher number of publications. They are nursing and medicine areas journals.

Chart 2 Title of article, journal title, country, year, design/number of participants – Uberlândia, MG, 2013 padronizar format dos intervalos 

Figure 1 provides the percentage of studies/year between 2000-2012. Note that 25% of the studies were published in 2012 alone.

Figure 1 Percentage of studies per year – Uberlândia, MG, 2013 

As for language, 63% (five articles) of the studies were published in English and 37% (three articles), in Portuguese. Although articles in Spanish could be used in the sample meeting the search criteria, no study in this language addressing the theme was indexed in the databases.

Regarding the professional area of authors, seven studies were developed by nursing professionals and only one by medical professionals.

In relation to the study designs that comprised the sample of this review, considering the aim of getting to know the spouses’ experience, only studies of the qualitative nature were selected.

Chart 3 shows the eight studies included in the review. Four (E4, E6, E7 and E8) described semi-structured interviews as the resource for data collection. Two articles (E1 and E5) described in-depth interviews, which is very close to the psychoanalytic nature. Through this design, motivations, desires, conflicts, fears, and also personality conflicts are known ⁽¹⁸⁾. It was also found that two studies (E2 and E3) did not describe the process of data collection.

Chart 3 Selection and characterization of participants according to the type of research and outcomes – Uberlândia, MG, 2013 

As to the aims established by the authors of the studies in this review, a description that is clear and easy to understand was observed. Three authors established the goals of exploring the experience of the spouses in face of the wives’ breast cancer (E2, E3 and E4), another article described the perception of the spouses in face of their wives’ mastectomy (E7), other authors aimed at describing the psychosocial effects and the mastectomy mastectomy from the husbands’ point of view and their perspective of this experience (E1), one article aimed at analyzing the participation of partners in the diagnosis and treatment of breast cancer (E8), another identified the type of social support offered by sexual partners of women with breast cancer (E6), and finally, one study explored the sexual concerns of the husbands (E5).

Regarding the number of the study participants and selection process, great variation was observed, with quantitative from five to 48 spouses. As for the selection, three studies reported that the participants were selected from their wives’ procedures and or health care appointments, considering that a previous contact was established with patients with breast cancer, and then, with their partners (E1, E6 and E7); two studies described that the sample consisted of a subsample of larger studies, but did not bring details about the participants selection process (E2 and E4), and finally, the remaining three studies did not describe the method used for selecting the participants (E8, E5 and E3).

The theoretical frameworks used by the authors for the analysis and discussion of data were the following: the narrative analysis used to recap past experience through the combination of verbal sequence of sentences with the sequence of events that actually occurred⁽¹⁹⁾. The psychoanalytic theoretical framework that seeks to understand the human beings in their wholeness, drawing attention both to their physical aspects and their feelings and emotions⁽²⁰⁾. The theoretical framework of grounded theory aimed at understanding the reality from the perception or meaning that a certain context or object has to the person, generating knowledge, increasing understanding, and providing a meaningful guide to the action⁽²¹⁾.

The age of the spouses participating in the study was quite broad, with a higher concentration of 50-year-olds. Other features related to the study participants’ sociodemographic data were not described by the authors; only two studies reported the belief / religion of the participants (E1 and E5); and a study (E5) described that 100% of its participants were Shiite Muslims.

None of the analyzed articles has proposed nor used intervention methods. The studies were focused on knowing/understanding the experience/perception of the spouses in face of their wives’ breast cancer.

Among the eight articles analyzed in this review, five of them predict practical applicability (E1, E2, E3, E4 and E5). The one that stood out was the provision of whole care by a health team targeting the entire family, and thus, the spouses, not only the cancer patients. Another highlight of practical applicability found in four of the studies (E2, E3, E4, E5) was the creation of support groups for the spouses, where they can meet other spouses and share their fears and anxieties.

Throughout the analysis of the study results, underlying categories and/or themes were identified. They stood out due to the similarity and relevance given by the authors, being found in several of the studies. Thus, the results of the articles that were part of this review were divided into eight categories and/or themes, as shown in Chart 4.

Chart 4 Distribution of themes related to the investigation results of the articles in this review– Uberlândia, MG, 2013 

In general, it is observed that most of the studies, i.e., five (62.5%), approached 50 to 87.5% of the identified themes. The most frequently investigated topics were the following: theme 1: appeared in seven out of the eight studies, corresponding to 87.5%; themes 2, 3 and 4: appeared in five (62.5%) studies, respectively.

1 - Changes in the relationship after breast cancer

The diagnosis of breast cancer led to several changes in the couple’s life, among which, one worth mentioning is the change in the marital relationship. Two kinds were found: either amounting to the positive aspects prior to the discovery of cancer or bringing conflict to the couple’s relationship. Positive changes in the relationship after cancer was a theme found in the studies, except for E8. Spouses reported the strengthening of the existing love and the increase of unconditional support to their partners. In opposition to this first observation, where breast cancer has led to the couple’s closeness, the E2 and E4 studies found the negative impacts of the illness on the couple’s relationship; in this category, the cancer challenged and brought conflict to the relationship of some couples. The disease also had negative effects on the couple’s communication. Spouses especially reported the difficulty in talking about breast cancer.

Still as part of this theme, the spouses’ perceptions were identified in relation to the relationship with their wives, such as the strengthening of the bond of love, the perception of increased tenderness and a greater understanding. They also reported that they perceived themselves as important in their wives’ process of coping with the disease (E7).

2 - Impaired sexual activity

The second category most frequently found in the speeches of the participants was present in the E1, E2, E4, E5, E6 and E7 studies, i.e., the decreased frequency of sexual intercourse due to breast cancer and its treatment. Despite this aspect, considered by many as negative, a change of focus in the marriage (quoting the participants) was identified, no longer focusing on the sexual aspect. Women were considered as the most important person in the husbands’ lives. Thus, they were concerned about supporting them, assuming that breast cancer is considered a threatening disease.

3 - Spouses as managers of the home / change in routine

This theme, found in the results of E1, E2, E4, E6 and E7, showed that breast cancer changed the family dynamics and the roles of the family members in the studies included. Many times the spouses added to their work activities the responsibility of the household chores and the care of their wives.

In addition to the double or even triple shift, the spouses also reported efforts to be physically present and give emotional support causing them a great weariness.

There was an evident perception of the participating spouses about the necessity and importance of the wives in parenting. This comprehension made them grateful for acknowledging what the wives had already done. However, it also triggered feelings of fear and powerlessness in face of the possibility of the wife’s absence (E7).

4 - Hope/positive feelings about the cure of the wife’s disease

This theme was presented in the categories of the results of E1, E2, E3, E4 and E7. The spouses used hope and positivity as a way of coping with the suffering experienced from the moment of the diagnosis, throughout the treatment, reaching the rehabilitation phase or, sometimes, death. The authors also reported that many spouses kept hopeful as a way of supporting and understanding their wives.

5 - Concealing/hiding real feelings

This theme was found in E2, E3, E4 and E8. Spouses often hid their real feelings, demonstrating positivity and hope, as a way to protect their wives, children and, even themselves, from suffering. Many felt that demonstrating their feelings would be proof of their weakness in face of the disease.

6 - Sadness and fear of losing the partner

This was a very present theme identified in E1, E2, E4 and E8. After the diagnosis of their wives’ breast neoplasms, there were mixed feelings involving the spouses, which can be attributed to the fact that cancer is still a disease very stigmatized by society, frequently associated with pain, suffering, disfigurement and death. Some of the common feelings experienced by spouses after their wives’ diagnosis are shock, disbelief, denial, anger, guilt, depression, anxiety, uncertainty, despair, fear, loss of control and isolation (E2 and E4).

7 - Religious support during the process of coping with the disease

Theme found in three studies (E1, E3, and E7). Throughout the search of the cure of their wives’ disease, the spouses clung to the faith in God as a spiritual basis for dealing with moments of great suffering. The statements here reported indicated that the faith and belief in God enabled the adjustment to the new situation and improved the coping ability for both the women and their partners.

The perceptions of the spouses on the importance of believing in God strengthened the hope and the understanding during the illness, and brought comfort to them in face of the difficult moments of sadness, uncertainty, fear and insecurity (E7).

8 - Lack of focus on the family

In the E1 and E4 studies, the lack of focus on the family was identified. It showed a gap between the treatment of women with breast cancer and their social and family context. The family is not included in the context of care by health professionals, and the focus turned solely to the woman with breast cancer, neglecting the social and family group to which she belongs.

DISCUSSION

The articles used in the review were published between 2000 and 2012. Prior to 2000, no study related to the topic and indexed in the investigated databases was found. 25% of the studies of this review were published in 2012. Compared to the period between 2000 and 2005, there was the same number of publications, however, in a time-period five times greater. Despite the increasing number of studies on the theme, the production of published studies is still small. No other literature review addressing this issue or any other similar one were found, highlighting once again the importance of this and of new studies.

Nursing was the field in which more studies were found. As the cancer treatment is of high complexity, it involves different therapeutic approaches, requiring interdisciplinary team performance. It is important to integrate professionals from other health areas in research on this theme, which should not be restricted only to nursing professionals.

The qualitative research methodology has given participants the chance of expressing their experiences, perceptions and meanings. The semi-structured and in-depth interviews and the focus groups were the most used tools for collecting data and turning them into scientific knowledge. The interview enables establishing an open relationship between the interviewer and the interviewee, in order for the dialogue to flow spontaneously, making the research rich in details, with no rupture between the project and the goals⁽¹⁷⁾. Therefore, the strategies defined for data collection of the studies in this review were found to be appropriate in relation to the methodology and aims proposed by the researchers.

Only three studies (E1, E5 and E8) mentioned and described the theoretical framework. In order to understand the experience of the participants, the use of the theoretical framework is extremely important in the development of a qualitative research. The correct analysis and interpretation of the collected data will only be appropriate depending on the correct choice of a theoretical framework that provides background and support. Thus, this important component of the research was underestimated in the majority of the studies included (E2, E3, E4, E6 and E7), making them weak from the theoretical-reflective point of view. Many studies published as results of qualitative research, in fact, used only techniques for collecting qualitative data (semi-structured interviews, focus groups, observation, among others) without bringing a theoretical framework for the analysis and the discussion of the data.

In general, the published studies presented limited information on the characteristics of the participants and the sociodemographic data, preventing a broadened knowledge, invalidating the standardization of the collected information, and the further analysis of features that may be related to the socioeconomic status itself, such as habits, risk factors, among other extremely important aspects in the study of populations, as the one chosen for this review: husbands of cancer patients.

The authors of the studies included presented several recommendations for the practice of care. The need to know the patient’s family’s routine was the one that stood out. The family is a valuable component in fighting the disease and the care for the rehabilitation of women with breast cancer, offering support and emotional, spiritual and biopsychological attention, having an important place in this process⁽²²⁾. Thus, the need for involving the family in the care of this woman became evident, but the family, including the spouse, must feel strong and able to provide such care, receiving the suitable support and education to cope with the situation.

Therapeutic groups focused on the husband appeared as a prominent recommendation among the authors. This resource must be thought as a space for sharing and strengthening of those men who have been willing to be with their wives, but suffer for not being qualified or even strengthened to do so. Hence, by working with multiprofessionals and in a multidisciplinary way, the health professionals shall seek strategies to enable this and other ways of providing for the husbands.

Throughout the findings, it was possible to identify the magnitude of the changes in the dynamics and in the personal life of the spouse, the family and also in the marital relationship. Moreover, the feelings that permeate the process of coping with the disease and the difficulties faced by these men to offer support and care. Often the roles carried out by the women prior to the illness are now taken over by the spouses.

Providing social support after the cancer diagnosis, and reducing the stress it causes are important tools for strengthening the bond between the couple, which are only achieved within a well-structured relationship or marriage. On the other hand, when there is a lack of structure in marital relations, the negative effects are reflected in the physical, social and emotional functions⁽²³⁾. In many cases, cancer makes previously existing marital problems evident⁽¹³⁾, even causing the breakup of the relationship/marriage. The literature describes the importance of a good communication in the marital relationship, since couples who do not communicate cannot maintain the much needed intimacy; without communication it is extinguished⁽²⁴⁾.

Due to the debilitating effects of the treatment of breast cancer for women, there is often a reversal of roles and routines concerning household chores. Changes become necessary in the family dynamics and with the husband taking over the role of the home manager. When women are diagnosed with breast cancer, especially in case of the surgical treatment - mastectomy –, a movement restriction of the upper limb was observed in most of them due to the axillary dissection on the side of the affected breast. Many times, the restriction may remain throughout the patient’s life and not just temporarily. Thus, a readaptation of the already established family routine is needed, with the main focus on household chores that are culturally assigned to women⁽¹²⁾.

The development of coping strategies, such as positivity and hope of cure, helps and ensures the family protection. It also makes it possible for the women to find their motivation by means of the love cherished by their relatives, especially the spouses who are engaged in the process⁽²⁵⁾.

There are reports of the spouses hiding their feelings of fear as an attempt to protect their wives and families, but a clear communication between the couple and among the family members is essential. So that they can discuss their doubts, fears, anxieties and thus, go through a milder experience of the disease and treatment. Poor communication may impair coping, drive people away and make the course more painful. That sense of protection on behalf of the husbands can be justified due to the fact that cancer affects not only the women, but the family as a whole, especially the spouses⁽²⁶⁾.

Studies have shown that the moments of greatest suffering for the spouses were in face of the breast cancer diagnosis, and when women underwent surgery as part of the treatment. However, the suffering is not restricted only to these two moments, but it lasts throughout the course, from the diagnosis up to the healing, the rehabilitation or the death⁽²⁷⁾. These findings show that the health professionals are responsible for enlightening about the disease and the treatment. When instructed, the spouses feel more confident, less sad and less scared.

Faith was the main source of support and assistance mentioned by the spouses in times of difficulty during the cancer treatment of their wives. Faith enables a strengthening of understanding and hope, helping to overcome the challenge of facing the disease and the treatments, as well as providing better support to their partners. As the pain reduces, the hope of healing increases. The belief in God increases faith, trust in the healing and success at the end of the treatment. This bond to religion relieves the suffering and serves as a refuge^(2,6).

Among other findings, this review allowed to identify a major flaw in the context of assistance to women with breast cancer, which is the lack of focus on the family and spouse. In general, health professionals have focused their assistance only on the patient, forgetting that there is often a family that needs attention, education and care. The diagnosis of breast cancer affects the entire family that faces times of great suffering. Emotions get unbalanced with the news of cancer in a loved relative. Hence, more focus should be given to assist the family by answering questions, giving consistent information on the treatment and continuously developing a process of education for the care and health promotion.

The need for the health professionals to establish effective communication became evident, creating strong ties with the whole family, not only with the women. Offering comprehensive listening and continuous support should also be part of the care provided by the health team, as it may help patients and families to strengthen their ties and relationships, resolving conflicts and thus, minimizing suffering⁽¹²⁾.

CONCLUSION

The results of this review enabled to deepen the knowledge on such an important topic and cast a critical eye on the knowledge produced in the national and international literature on the experience of the spouse in face of his wife’s breast cancer.

This review brought to light the existence of a significant gap in the care of women with breast cancer, since many relatives and spouses were not considered important components in this process. They were not included as participants and were neglected. As discussed throughout this review, the spouses also need care the same way as the women with cancer do. They need additional information about the illness of their wives, their treatment, and they need to receive attention to their emotional, social and sexual needs.

Given the importance of the theme, few studies have been found in the national and international literature addressing the experience of the spouses. This referred to the need of investing in research focused on this area.

Integrative review studies are relevant for the grouping and synthesis of knowledge, and for bringing subsidies for the evidence-based practice, the care in nursing stands out. The results derived from this study provided a scientific basis for the practice and improvement of care.

Finally, the importance of developing new studies is emphasized, for a deeper understanding of the experience of spouses who go through the breast cancer of their wives, and for seeking the development of care strategies for this specific group.

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Received: November 29, 2013; Accepted: August 11, 2014

Correspondence: Anna Cláudia Yokoyama dos Anjos. 
Campus Umuarama - Bloco 2U, 
Av. Pará, 1720 - Bairro Umuarama. 
CEP 38400-902 – Uberlândia, MG, Brasil
. annaclaudia1971@gmail.com


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