The Forgotten Survivor: Supporting Women with Metastatic Breast Cancer and Their Spouses
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The Forgotten Survivor: Supporting Women with Metastatic Breast Cancer and Their Spouses
Lillie D. Shockney, RN, BS, MAS, ONN-CG
Breast cancer accounts for 1 in every 3 cancers diagnosed in American women today. About 155,000 women are living with metastatic breast cancer in the United States, and this number is expected to increase to 162,000 in 2011.1 The 5-year survival incidence rate for women with metastatic disease is about 23%.2
Although extensive research has been done on living with early breast cancer, very little has centered on metastatic disease. This makes understanding the needs of women with metastatic breast cancer a challenge. To best assist women facing terminal breast cancer, it is vital that we listen to their expressed needs and develop methods for meeting those needs to reduce physical and psychological distress and enhance quality of life.3
This article will review available data on the needs of women with metastatic breast cancer and interventions to address these needs, describe the development of a couples retreat for women with metastatic breast cancer, and report outcome data from 2 retreats.
REVIEW OF LITERATURE
Needs of Women with Metastatic Breast Cancer
There is limited published research on the physical, social, and psychological impact of metastatic breast cancer. Available data on psychological effects suggest a high level of distress, with an estimated 22% to 50% of patients meeting the criteria for a psychiatric diagnosis of clinical depression and 33% meeting the criteria for having an acute stress disorder.4
Four studies examined the life experience and diverse needs of women with metastatic breast cancer. Vilhauer interviewed 14 Caucasian women with metastatic breast cancer. Participants expressed concern about body image, sexuality, insurance coverage, loss of the future, reduced work capacity, worries about the effect of stress on their disease, and fear of dying. Participation in daily activities was compromised as a result of physical pain, feelings of social isolation, and a medicalized lifestyle that required attendance at multiple appointments. Re spondents were conflicted by the need to protect their loved ones and an inability to confide in significant others, family, and friends.5 Aranda and colleagues interviewed 105 women with metastatic breast disease. Participant concerns fell primarily into categories of psychological and health information needs.3 They expressed concern for their close companions, loss of control, uncertainty about the future, and a desire for information about what they could do to get better. In a qualitative study with 25 Finnish women undergoing treatment for metastatic breast cancer, participants described a number of negative psychological, physical, and social effects including reduced quality of life because of physical limitations, pain, fatigue, weakness, change in body image, nausea, limitations to work and home activities, altered social relationships, anger, and concern for the children they would be unable to raise. These women expressed a desire to live as normal a life as possible, maintain relationships, and control their situation to maintain quality of life.6 Finally, in an online survey, a majority (69%) of women with metastatic disease indicated it would be helpful to hear about the experiences of other women with stage IV breast cancer.7
Interventions addressing the psychological and informational needs of oncology patients are important for positive outcomes.8 Studies suggest an inverse relationship between unmet needs and quality of life for women with nonmetastatic breast cancer.9 The work of Mayer and Grober concluded that slightly more than half of respondents highly rated “buddy programs/peer networks” and guidance with spiritual issues as important opportunities for support. However, only 25% sought spiritual counseling, and less than one-fourth made use of peer support. Only 41% knew if such services were available to them. Seven percent said they had participated in couples counseling, but only one-quarter sought it out. More than 80% responded that they frequently relied on their spouse/partner for emotional support.7 Only one study tested an intervention to meet the needs of women with metastatic breast cancer. Aranda’s research team used nurse-led, in-person, and telephone information sessions to address the concerns of women in their study, but their results were not statistically significant.10 Edwards, Hulbert-Williams, and Neal reviewed 5 older studies involving psychological interventions for women with metastatic breast cancer. Interventions provided only shortterm benefit, and the authors concluded that there were insufficient data to recommend conclusively cognitive–behavioral or support–expressive group therapies as tools for improving the psychological effects of living with metastatic disease. 11 Leadbeater described a nurse-facilitated support group for women with secondary breast cancer. Women in the group reported a sense of isolation before joining the group, because they had not met others with similar disease. Benefits included improved family relationships, ability to discuss sensitive issues with which they did not want to burden family members, and improvement in coping.12
The research on metastatic breast cancer does not provide detailed direction for addressing the needs of women with this disease. Some qualitative data exist from which inferences can be drawn about the topics of concern to this population. Few interventional studies have been performed, and those that are available have not effectively demonstrated actions that can be taken to improve outcomes long term. In a study focusing on the needs and quality of life of oncology patients, needs ranked highest by patients and providers were not congruent.5
In the passage of every stage of the breast cancer experience, there is need for sharing, support, and emotional healing. By definition, retreat means withdrawal, going away from a place or point of view; finding a safe place or avoiding confrontation. A retreat can also be defined as a religious experience, time away spent in prayer and meditation. 13 For the Johns Hopkins Avon Foundation Breast Center’s program, the application of a couples retreat concept for stage IV breast cancer patients and their spouses meant time away from normal activities and daily stressors, replacing them with an opportunity to reframe and reflect on the breast cancer experience as lived by individuals and as by couples.
The transactional model of stress and coping served as a framework for planning an intervention to influence social support and coping skills to improve quality of life. According to the model, social support directly affects health outcomes, secondary appraisal, and coping effort; coping in turn also affects outcomes. Moderating actions aimed at any of these points can influence individual perceptions and change outcomes.14
In this project, the stressor is metastatic breast cancer and the moderator is the support provided at the retreat. By offering a retreat that shares and teaches coping skills and links resources for new social networks after the event ends, the objective is to affect positively women’s appraisal of their situation. In reframing their thought processes about the level of threat posed by cancer, modifying what they can do about it, and decreasing uncertainty, the expected outcome is increased quality of life. Though this concept is congruent with the model, the retreat must also contain information of perceived interest/need for the participants. For this reason, a pre-retreat survey was developed to gather information about perceived informational needs.
The Johns Hopkins Avon Foundation Breast Center has provided one-on-one support for women with breast cancer since 1997 and conducted survivor retreats since 2001. There are few support programs and services locally, regionally, or nationally available for patients diagnosed with stage IV breast cancer. Such patients might be termed the “forgotten survivors.” In addition, there are limited resources and support programs for the spouses of patients battling stage IV breast cancer. Following the success of a 2-day retreat for women (only) with stage IV breast cancer, a 2.5-day/2-night retreat for couples living with metastatic breast cancer was planned with the first event occurring in 2009.
Retreat attendees self-selected and were not limited to patients undergoing treatment at the Johns Hopkins Avon Foundation Breast Center. The patient or spouse learned of the retreat via brochures in the Breast Center lobby, mention of the retreat by an oncology provider, brochures distributed to regional breast centers, or by visiting the breast center’s website. In some cases, the spouse initiated the registration process.
“A Journey of Courage and Hope for Couples,” the chosen title given to the couples’ retreats, was developed on the format of previously successful survivor retreats, lessons from the women-only metastatic breast cancer retreats, the assessed needs of the couples, and an analysis of the literature. Desired goals directed the retreat format and content (Table 1). Activities included time to learn, share personal stories of coping and strength, recognize challenges, problem solve, and connect with others living with similar experiences.
The retreat setting was selected purposely to promote individual and group well-being and a sense of privacy and safeness. The setting is away from any medical center, yet accessible by a nearby interstate highway. It is located on 400 acres of natural surroundings, containing both open and sacred spaces. A labyrinth to walk and Peace Garden to visit, gentle trails, benches around a pond, and lovely vistas evoke feelings of tranquility. Each couple had a private room and bath. Meals were buffet style and tables set in groups allowing for free-flowing mealtime discussions. Group meetings were in small rooms with comfortable chairs, lighting, and temperature. Circles were formed so that all participants could see and hear each other. From the beginning, the facilitator established a safe place for sharing by discussing privacy rules among the group. Healing and connection grew from the sharing of stories and generous listening. Calming chimes gathered the group, and moments of deep breathing and meditation encouraged participants to focus.
Administrative support for the retreats included facility, lodging, meals, staff, and administrative costs. A generous philanthropic donation funded the retreat. Facilitators included 3 highly experienced (range, 8-15 years) female RNs/NPs from the Breast Center, a medical oncology social worker (male), and a cancer center chaplain. A trained senior breast cancer survivor volunteer affiliated with the Breast Center assisted with the logistical and organizational challenges of the event (onsite registration, room setup, problemsolving issues, etc).
Before each retreat, a survey was mailed to both the patient and spouse. The 15-item survey developed for this project appraised the psychosocial needs of the women and their spouses attending the retreat. The tool was based on commonly described themes observed in a review of literature on metastatic breast cancer. The readability corresponded to a Flesch-Kincaid grade level rating of 4.4, as assessed by Microsoft Word. Ten questions required responses to a 5- point Likert-type scale (1 = strongly agree to 5 = strongly disagree) with a neutral option. Five questions solicited open-ended responses.
To maximize response rate, a letter was mailed to each participant 2 weeks before the survey, informing them of the impending arrival of the survey.15 A stamped, self-addressed return envelope was included with the survey. This survey was completed again at the close of the retreat. A program evaluation was completed at the end of the retreat and 3 months later.
The findings reported herein represent the combined data from 2 weekend retreats offered in September 2009 and August 2010.
Nineteen couples registered for the retreats. Five couples cancelled within 48 hours of the event as a result of the patients’ severity of illness. Combined, 14 couples attended the 2009 and 2010 retreats. One patient attendee died within 5 days following the retreat. Data are missing for 1 couple. Among patients, the length of time from diagnosis with stage IV disease to time of attending the retreat varied from 6 months to 7 years. The patients ranged in age from 34 to 82 years and had been married from 24 weeks to 52 years. About half of the participants came from long distances and received their care elsewhere.
Responses to Retreat
Table 2 summarizes the mean pre-/post-responses to the survey for men (spouses) and women (patients). Given the small sample size, we were unable to demonstrate statistically significant mean differences across all questions for the effect of the retreat. However, the mean differences suggested some interesting response differences between husbands and wives and changes from pre- to postretreat. The desires to “talk with other couples who have metastatic breast cancer” and “to learn how to cope with the cancer” were rated in the “agree” to “strongly agree” range by all participants before the retreat. Following the retreat, interest in learning to cope with the cancer dropped for women and the desire to talk with other couples increased for men. All participants “agreed” or “strongly agreed” to the desire “to make the most of our time.” After the retreat, this desire increased among men. Women documented a greater need to “feel in control of our situation” than men, and this need did not change over the course of the retreat for either group. Women were more likely than men to agree to the statement “I am worried that the cancer will spread”; after the retreat, this worry lessened among women but increased among men. Expressions of worry that the “results of treatment are beyond my control” were fairly similar among couples (neutral to agree) and lessened after the retreat. Two questions examined concerns about worry and coping among loved ones. In general, these concerns dropped following the retreat among all participants. Table 3 provides qualitative insight into other common sources of worry.
Both patients and spouses verbally expressed that they benefited from attending the retreat and found the program content of value. Each couple wrote a personal thank you letter to the donors who made the retreats possible. Participant comments about specific aspects of the program are highlighted in Table 1.
The findings in this study are limited by small numbers but suggest that patients and spouses benefited from participation in a 2.5-day weekend retreat for couples living with metastatic breast cancer. In some instances, it was the husband who registered the couple for the event and, in others, husbands refused to attend despite their wife’s desire to attend. Marketing strategies that use personal testimonials from men who attended the retreat may assist in couple recruitment. Limiting group size to no more than 12 couples is important. These types of programs are expensive and require intensive staff time and energy. The use of trained volunteers and clinicians with expertise in active listening and facilitating group discussion as well as knowledge of the disease is important to the success of the retreat. During the retreats, 2 graduate nursing students assisted with implementation. Their comments reinforced the value of “witnessing the process” to enhance the quality of care they provided for women with metastatic disease and to replicate this model of support elsewhere. Video vignettes of some of the free-flowing discussions might also be useful to promote discussion among couples in alternative formats, such as weekly or monthly faceto- face or online support groups.
Because of the participatory nature of the retreat, patients need to be well enough to attend. Because some patients were previously unknown to the program leaders, it was not possible to know how ill a patient might be. Attrition can be expected due to progressive and unexpected declines in patients’ conditions between the point of registration and when the event takes place. In the first group, one patient appeared very ill, though she and her husband considered her to be currently “stable.” She died less than 1 week later. This impacted group communication after the retreat. The death of this young member, age 34, less than 1 week after the retreat, along with the spouse’s announcement of her death, appears to have stopped communication among group members; to our knowledge, no further communication occurred between participants. In the second group, participants communicated regularly among themselves, cheering one another on whenever even a small victory was achieved. A member of this group also died, an 80-year-old member, 6 months after the retreat, but members continued to support one another as well as the surviving spouse. This suggests age and/or proximity of loss to the event may influence subsequent group support.
Data suggest couples with cancer are likely to exhibit significant caregiver strain and burden.16 In our second retreat, at least 1 spouse provided comments suggesting he too had cancer. Another commented on concern for loss of their home in the event that his wife could no longer work. Several expressed the need to “be strong” for their wives and helplessness with managing pain and the effects of treatment.
Finally, the findings from these retreats suggest that couples may cope differently and express levels of stress differently as they face metastatic disease. This is consistent with the work of Badr and colleagues, whose work reinforces the importance of couples working together to adapt to the disease.17
Implications for Navigators
It is important for nurse navigators to incorporate into their needs assessment for breast cancer patients battling metastatic breast cancer the need of patients and partners to prepare psychologically for end of life. All too often oncologists avoid discussing the emotional needs of patients or their spouse, because they are more focused on treatment. Patients and their partners need a sounding board and an opportunity to spend time with others, and healthcare professionals can facilitate such discussions on their behalf. The timing of such an intervention by the nurse navigator can occur as treatments become limited and addressing quality of life (instead of quantity of life) becomes the focus. Patients have bonded usually very well with their nurse navigator, so it is a natural fit for the navigator to intercede and (1) assess the patient and her partner for a need to express their concerns regarding the future; (2) communicate and participate in a support group of some kind where they can meet other patients/partners also battling stage IV breast cancer; (3) provide resources for explaining information regarding end of life when communicating with children; and (4) provide an opportunity for expressing a desire of hope for future generations.
This summary of the processes and outcomes of 2 retreats for couples designed to enhance learning, share personal stories of coping and strength, recognize challenges, problem solve, and connect with others living with similar experiences. Findings provided insight into the concerns of husbands and wives living with metastatic breast cancer and support the literature suggesting that levels of stress and worry differ between spouses and patients.
Statistics for metastatic breast cancer. 2010. http://mbcnet work.org/education/category/statistics/. Accessed February 16, 2011.
Horner MJ, Ries LAG, Krapcho M, et al; eds. SEER cancer statistics review, 1975-2006. Bethesda, MD: National Cancer Institute; 2009. http://seer.cancer.gov/csr/1975_ 2006. Accessed February 16, 2011.
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Lazarus RS, Folkman S. Stress, Appraisal, and Coping. New York, NY: Springer; 1984.
Dillman DA, Smyth JD, Cristian LM. Mail and Internet Surveys: The Tailored Design Method. New York, NY: John Wiley & Sons; 2000.
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Badr H, Carmack CL, Kashy DA, Cristofanilli M, Revenson TA. Dyadic coping in metastatic breast cancer. Health Psychol. 2010;29:169-180.</p>
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