Copyright B 2016 Wolters Kluwer Health, Inc. All rights reserved.
Huibrie C. Pieters, PhD, DPhil, RN
‘‘I’m Still Here’’ Resilience Among Older Survivors of Breast Cancer
K E Y
W O R D S
Background: Cancer presents a severe adversity that calls on intrinsic strength
Adaptation
factors such as resilience. Breast cancer is especially common among older women.
Breast cancer
Understanding the interaction between the mechanisms of resilience and the
Cancer survivorship
psychosocial impact of cancer requires consideration of developmental age.
Gerontology
Objective: This research explores resilience from the point of view of older women
Gero-oncology
who recently completed treatment for early-stage breast cancer. Methods:
Grounded theory
Constructivist grounded theory directed data collection and analysis of 31 personal,
Women
semistructured interviews with 18 women aged 70 to 94 years. Results: Faced with overcoming the adversity of a first cancer experience, participants rebounded and restored balance to their lives with a sense that they did the work of managing cancer with self-efficacy and autonomy. Resilience was evidenced as a multidimensional process containing a natural interaction of attributes. Self-reliance, optimism, and persevering were embedded in human interconnectedness. Conclusions: The process of cancer survivorship was positioned in the larger picture of the joys and hardships of having lived a long life. The core self continued through these changing times, connecting the past, present, and anticipated future, as exemplified by ‘‘I’m still here.’’ Regaining balance required tenacity, pragmatism, and dedication to do the work that needed to be done to treat cancer and move on with life. Implications for Practice: Resilience is a valuable resource in strength-based approaches in healthcare. Practical examples for clinicians who follow a strength-based approach to promote adaptation for the continuing challenges of breast cancer survivorship among
Author Affiliation: School of Nursing, University of California, Los Angeles. This work was supported by funding from the Oncology Nursing Society Foundation and Sigma Theta Tau International. The author has no conflicts of interest to disclose.
Correspondence: Huibrie C. Pieters, PhD, DPhil, RN, UCLA School of Nursing, 4-956 Factor Building, Box 951702, Los Angeles, CA 90095 ([email protected]). Accepted for publication January 19, 2015. DOI: 10.1097/NCC.0000000000000248
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older women include acknowledging unique individual expressions of resilience. Gero-oncology is a salient field for multidisciplinary teams who seek to study resilience.
R
esilience is a complex phenomenon that spans various professional disciplines. Defined succinctly, resilience is the positive adaptation to adversity. Within healthrelated literature, individual resilience applies to physiological aspects of stress and psychosocial coping1 and is generally viewed as a valuable resource in strength-based approaches of health to optimize adaptation.2 Concept analyses of the psychosocial aspects of the construct show inconsistency about the defining attributes of resilience3Y5 and variations with gender, age, and culture.5Y8 Among people of both genders older than 65 years, characteristics that evidence resilience are altruism, commitment, dynamism, faith, and humor,1 although the construct remains to be adequately validated.9 Resilience from the unique perspectives of older women has been evidenced by equanimity, perseverance, self-reliance, meaningfulness, existential aloneness,10 social connectedness,11,12 taking challenges head on, and a spiritual grounding.13 Women in the oldest old age group (985 years) described resilience as determination, learning from earlier adversities, accessing healthcare, family support, and caring for themselves and others.14 A sentinel article described resilience as a constellation of innate personality traits that is activated in response to a stressor.6 More recently, the notion that resilience is a fixed personality trait was denied in favor of resilience as a multidimensional process that operates temporally before, during, and after an adverse event15Y18; resilience is both dynamic and modifiable.4,5 However, resilience is ‘‘a splintered concept,’’12(pp36) and the controversy about the conceptual clarity of the phenomenon continues.2 The psychometric properties, including conceptual adequacy, of measurement scales are incomplete.19 Despite controversy about the mechanisms of resilience, agreement exists as to its outcomes. Essential consequences are bouncing back and continuing to engage in life4 despite the major risk for developing psychopathology.16 Effective coping and positive adaptation are primary outcomes, along with the perception that hardship was overcome, resourcefulness was gained, and that mastery of future life challenges is possible.3,4,20 Other consequences of resilience, finding meaning and purpose, reflected the unique way resilient individuals appraise environmental hazards.10,16 Among older women, resilience presented as a determination to maintain, reach, or recover emotional and physical health after an overwhelming loss or illness.21 Balance was restored after a threatening event and the experience was integrated into the backdrop of all previous life experiences.10 A diagnosis of cancer presents a severe adversity that calls on intrinsic strength factors such as resilience, but understanding the psychosocial impact of cancer requires consideration of developmental age22 and cohort effects.23 Older people experience cancer in the context of normal aging.24 However, experiences of geriatric oncology patients are greatly understudied.24Y26 Breast cancer, the most common cancer in women worldwide, is especially common among older women. The ‘‘demographic
Resilience Among Older Survivors of Breast Cancer
imperative’’18(p138) of our aging society is associated with the expectation that new cases of breast cancer among women 65 years or above will increase dramatically from 1 068 000 in 2010 to 2 858 000 in 2020,27 with 20% of these women 75 years or above.28 Age 65 years or older is a strong and independent risk factor for dying of complications of breast cancer itself; the breast cancer mortality rate among older women is disproportionally high compared with younger women.29 Among this underrepresented and high-risk population, breast cancer presents specific age-related challenges, such as preexisting comorbid diseases and social constructions of breast cancer associated with prolonged suffering and death.30 This cumulative stress may be countered by protective factors such as resilience to increase well-being. Although resilience has been studied among younger people across various stages of the cancer trajectory31 and found to be negatively associated with emotional distress,32 depression,33 quality of life34 and posttraumatic stress disorder,35 resilience is a relatively new concept in gerontology.18 There is a dearth of knowledge regarding how resilience is experienced and evidenced in a geriatric-oncology sample of women adapting to breast cancer. Therefore, the purpose of this research is to explore and describe the adaptational experiences of women 70 years or older who recently completed treatment for early-stage breast cancer from the perspective of the women themselves.
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Design and Methods
All aspects of the research were directed by constructivist grounded theory.36 Grounded theory was first introduced Glaser and Strauss37 and then further explained by Glaser38; it was later expanded by Strauss and Corbin39 as a systematic process to generate theory based on qualitative data. The research methodology assumes that humans are practical beings who interact with each other,40 dynamically act back on their surroundings, and respond to what is useful and therefore meaningful.41 Constructivism advances classical grounded theory and informs assumptions in ways that are particularly suited to research about resilience. With social constructivism, human beings construct knowledge and modify their interpretations in the light of new experiences.42(p305) The interpretation of a situation has a meaningful effect on its outcome.43 Constructivism also posits that objective knowledge and truth are the results of perspective,36 which is compatible with an exploratory study of the phenomenon of resilience. Indeed, grounded theory has been used to explore resilience, albeit with younger age groups.44(p262) Underlying assumptions for the current research included that a diagnosis of breast cancer among older women presented an unanticipated disruption to life and added a major risk to the ongoing challenges of adapting to aging itself. Also, the cancer journey was not an acontextual, singular life event but needed to be studied in the context of unique age-related stressors.30 Cancer NursingTM, Vol. 39, No. 1, 2016
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Furthermore, 3 contextual influences (being diagnosed with a life-threatening disease, being female, and being older) contributed to marginalizing and silencing older women who were diagnosed with breast cancer.
Recruitment, Data Collection, and Analysis After approval was received from the institutional review board at the University of California, Los Angeles, recruitment flyers displayed at various sites, mailings from a breast center, and snowball sampling45 were used to recruit women in metropolitan areas of Los Angeles and suburban areas of Southern California. Eligible women were 70 years or older and had completed treatment for primary, early-stage breast cancer within the past 3 to 15 months. Women who were English speaking and willing and able to articulate their experiences were welcome to participate. Of 35 women who called, 18 were eligible and all 18 agreed to participate. Women who were not eligible completed treatment more than 15 months ago (n = 9), had a history of previous cancers (n = 5), were younger than 70 years (n = 1), or were not able to articulate in English (n = 2). Enrollment ceased with data saturation, the point where no new dimensions were found in the data.36 Recruitment, screening for eligibility, and interviewing were done by the author, a doctoral-prepared oncology nurse in her mid-50s with previous experience in grounded theory methodology. Data collection occurred through in-depth interviewing at a private place of the woman’s choosing. Semistructured questions, purposefully developed from published literature and refined during a pilot study, allowed stories of adaptation to emerge during interviews. Neutral questions were asked about perceived adaptation and lack of adaptation across the cancer trajectory to guard against possible bias that lauds resilience. Questions were formed to avoid using the word resilience; in fact, the word was never used in any interview by either the participants or the researcher. Thus, open-ended questions invited descriptions of what the participants potentially perceived as a failure to adapt without feeling obligated to only paint a bright picture (for exemplars, see Table 1). The interview itself was
favorably received, as evidenced by an apparent strong desire to talk and expressions of gratitude for the opportunity to describe cancer-related experiences. Thirteen women were invited and agreed to second interviews. The second interviews built on the themes generated from the first interviews to give depth and breadth of insight to characteristics of adaptation after breast cancer. Because a relatively recent cancer experience is a major life disruption, interviews proceeded with sensitivity and attention to emotional distress. The total of 31 interviews lasted between 52 and 170 minutes (x¯ = 106 minutes). Participants received $50 compensation per interview. To ensure credibility, interviews were audiotaped, transcribed verbatim, and then checked to ensure accuracy. Data analysis for the first and second interviews followed the systematic process of constructivist grounded theory: constant comparison involved initial coding, followed by focused coding, which led to theoretical coding to find the common voice across cases.36 In the tradition of constructivism, critical self-reflexivity to minimize researcher bias was an integral part of the entire research process. Field notes, memos, and diagrams were used throughout data collection and analysis to conceptualize data in various ways. To enhance rigor, accountability, and depth of analysis, collaborative analysis was done with qualitative researchers through crosscomparison of initial and theoretical coding on 18 of the interviews. This triangulation involved independent coding by the author and another analyst, followed by comparison and discussion of data with a continual reflexive stance to check assumptions made by researchers. The 18 women were 76 years of age on average and had completed treatment 8.5 months earlier. The participants reported the stage of the breast cancer as ductal carcinoma in situ (n = 1), Stage I (n = 4), Stage II (n = 4), Stage III (n = 2), or unknown (n = 7). Most women received more than 1 treatment, including lumpectomy (n = 12), unilateral (n = 5) or bilateral (n = 1) mastectomy, radiation treatment (RT) (n = 12), and adjuvant hormonal therapy (n = 11). Fifteen participants reported at least 1 preexisting chronic disease. Eleven women self-identified as white; 2, as Latinas; and 5 as African American/black, Chinese,
Table 1 & Examples of Interview Questions and Related Prompts Question
Prompts
Now that you think back, what did you not manage well, or could perhaps have managed better, when (*) happened? 1. What practical difference did it make when you did that? 2. How did doing (*) make a difference or how did it not make a difference? What do you think made it possible for you, to manage (*)? 1. Can you give me an everyday example of how you managed that? 2. Who or what were the people or things that helped you deal with that? How did you solve a problem like that? 1. How did you know that you managed that challenge well? 2. Can you give me an example of that? Can you tell me about a time when you had to deal with a major How were you somehow able to get through it or in which ways are hardship after you had finished cancer treatment? you are still challenged with this major adversity?
Can you tell me about how you got through that difficult time when (*) happened? In your experience, how was doing (*) useful, or how was it less helpful?
(*) denotes women’s own words preceding the question, such as ‘‘you were so shocked to hear that you had breast cancer’’ or ‘‘learning so many new facts about breast cancer in a hurry.’’
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Filipino, Indian, or Persian. Six women were immigrants or born to immigrant parents. More characteristics about the context of the sample are presented in Table 2.
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Results
Breast cancer was experienced from the backdrop of having lived long lives that contained both joys and hardships. Past adversities that called for adaptation included the deaths of dearly beloved people such as spouses and children, a sibling who died in a war, a child who committed suicide, and old friends and family who had died of cancer. In addition to the breast cancer diagnosis, some of the recent events that threatened the fabric of the women’s lives at the time of our interview included enduring poverty and being the sole caregiver for a frail spouse. A field note written after an interview showed how being a woman who had a daughter who was recently diagnosed with cancer was stressful: ‘‘I was early, so I was waiting in the car when a woman came out of the home and invited me inside. She looked like a chemo patient so when I saw her I thought that this must be ‘Grace,’ but I was confused because when I spoke with ‘Grace’ to make our appointment, she said that she had just had her 1-year follow-up and ‘all went well’ (and she did not receive chemo anyway!) Well, the woman introduced herself as ‘Grace’s’ daughter! During our interview, ‘Grace’ spoke about her daughter who is receiving treatment for ‘a much more serious cancer,’ diagnosed when she was receiving her RT. This experience leaves me very aware that 2 of the women
Table 2 & Sociodemographic Characteristics (N=18)
Characteristics Marital status Married or living as married Divorced Widowed Never married Education Some high school Graduated from high school Some college Bachelor’s degree Some graduate school Graduate degree Annual household income G$20 999 $21 000Y$40 999 $41 000Y$60 999 $61 000Y$80 999 $81 000Y$100 999 9$101 000 Living situation Live alone in home or apartment With spouse in home With family member(s) With friends Family members live with woman
N
x¯
6 6 5 1
50 29 8
2 9 2 1 1 3 8 3 3 0 2 2 5 5 5 1 2
Resilience Among Older Survivors of Breast Cancer
this far has daughters who were diagnosed with cancer within months of their mothers’ diagnosis. This must be very hard for her (she is especially close to this daughter), but ‘Grace’ is certainly optimistic about a future free of cancer. She looks forward to do much more sewing for her family and friends from her sewing room with the beautiful view.’’ Starting with the shock of being diagnosed with breast cancer and moving to the positive outcome of restoring balance in their lives, resilience manifested as a multidimensional construct. Narratives evidenced a fluid interaction of internal and external attributes of resilience. Internal attributes such as self-reliance and positivism were seamlessly incorporated with engaging in meaningful interactions with other people. For this sample, the telling of their stories provided an opportunity to position the process of cancer in the larger picture of life and thus frame continuity of their core self through changing times.
Being Self-Reliant: ‘‘I’ve Learned to Get Strong Just by Doing For Myself’’ Although personal agency was mostly relationally based, all the women described that overcoming the adversity of what they perceived as a deadly diagnosis was not dependent on others. In conjunction with relating to others, the woman herself stood out as the main person in her story who confidently and competently did her inner work alone. ‘‘Iris’’ described nurturing herself while washing the dishes and working against the fear of cancer recurrence: Sometime, I (am) washing dishes and I started thinking of it (recurrence)Iit can come like that (snaps fingers)I(then) I say to my mind, ‘‘I have to, I have to forget this.’’ I take care of myself and that’s itIthat helps me, it does. Uniqueness of individual circumstances that called for selfreliance and the creation of an unconventional path during changing times were emphatically described. ‘‘Annie’’ exemplified how she valued her ability to create new coping strategies for her particular situation. With no family or supportive friends, ‘‘Annie’’ recognized that she needed to manage her cancer trajectory alone, ‘‘I just knew that there wasn’t going to be anybody out there for me and I had to do it for me.’’ She adapted by valuing her car, ‘‘a beautiful car with a most beautiful sound system’’ as her best friend that allowed her independence. She said: I’ve learned to get strong just by doing for myselfII’ve just turned my thoughts into my car, it’s my best friend, it’s gonna get me aroundII can go to the doctor because I get to drive my car and I just kind of like turned it into my friendVit’s a crazy way to think, but it waits there for me, and then when I’m ready to go home, it never fails meI my car settles me down and I get there (laughs). With 1 exception, women who were married or partnered and those with supportive family, all told their loved ones about the breast cancer soon after the diagnosis. These women independently planned for the best time to break the bad news to limit upsetting family members. Framed by ‘‘Keisha,’’ as ‘‘each Cancer NursingTM, Vol. 39, No. 1, 2016
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person has a unique diagnosis,’’ women naturally reflected that they themselves made treatment decisions and that they made the right decisions for their individual circumstances. Participants with supportive spouses valued them as sounding boards. However, these women also emphasized their independent decision making about treatment options. For example, ‘‘Martha’’ said about her husband of approximately 5 decades, ‘‘Of course we talked about it (cancer), both of us talked about it, but I knew what I was feeling. I had to make the decision. It was my body and he was supporting me.’’ Furthermore, self-reliance was manifested in deciding who to invite (and not to invite) to accompany the women to their clinical appointments. Some participants took support people to appointments, but often, they preferred that this person wait outside while the woman consulted with the physician. Although women appreciated the company of the support person, some experiences were preferably faced alone. Perceptions of such selfreliance were described with pride. Memories of characteristic self-reliance and adaptation before the cancer diagnosis were naturally and confidently portrayed by all of the women. ‘‘Daisy,’’ who, because of failing vision, could no longer read telephone numbers, relied on her ‘‘positive nature’’ and used her memory that ‘‘was always quite excellent’’ to memorize telephone numbers to maintain regular contact with old friends and family. However, in the context of aging, the women had opposing views of autonomy. At age 94 years, ‘‘Isadora’’ readily admits, ‘‘I can’t do much anymore. I haven’t been able to for a long time because of being so oldIIt’s hard for me to get ready and go out and do stuff.’’ However, cancer had not changed ‘‘Isadora’s’’ sense of self-reliance, ‘‘I’ve been self-sufficient all my life.’’ She used age to buffer the emotional impact of the cancer experience, ‘‘At my age, losing a breast, it’s just something that happenedIit didn’t hold me back or stop me.’’
Seeing the Bright Side: ‘‘I’d Rather Make Lemonade’’ Optimism appeared in self-descriptions such as ‘‘lucky’’ and ‘‘fortunate’’ that were laced throughout the narratives. Hope emerged as a dimension of this optimism. The women all spoke about possible cancer recurrence, but they were optimistic and planned for a future without cancer. The women commented with humility and gratitude about their relative good fortune when they described people who were perceived to be less fortunate than themselves that they observed in oncology waiting areas (such as those being treated for advanced cancers, the uninsured, or patients with hair loss or in wheelchairs). Comparing themselves with others who also experienced breast cancer, the participants were encouraged and optimistic when those women received more RTs or had more drainage tubes after a mastectomy. When the women noticed their lumpectomy incision healed without noticeable physical changes, they felt hope. Comparing themselves favorably with other people who had not experienced cancer also helped adaptation. ‘‘Raya’’ compared her ‘‘huge, huge’’ mastectomy scar with ‘‘the hundreds and thousands of our young men and women who
are fightingIand some of them are maimed and others have died.’’ She then described how comparing her situation with these warriors helped her to see she that is not alone and helped facilitate her adaptation: And I thought that, ‘‘my goodness, what I endure is a little scar and I’ve had 74 years (laughs) on this earth and what they’re doing is just amazing, and so I can take this scar.’’ Now, I just see it’s just a mark that’s there, just a mark. Humor was another dimension of optimism. Each participant narrated the funny side and consequently made the best of a potentially sad situation. Enjoying humor was described and also effectively used to socially engage the researcher during our interviews such as when ‘‘Doreen’’ said that ‘‘I call one (breast) Perky Patty and the other Saggy Maggy’’ because the 1 breast is still swollen after 30 RTs. However, displaying humor was not frequently evidenced by telling jokes. Instead, humor was represented as the ability to emphasize the lighter side of hardships, such as when ‘‘Keisha’’ laughingly concluded about the many challenges of her cancer experience, ‘‘It’s lifeIif you don’t take what they give you and make lemonade, then you’re gonna have some sour mess to deal with. I’d rather make lemonade.’’ The joy of humor occurred when women were alone with their thoughts and also while enjoying humor with others. ‘‘Raya’’ reframed her ‘‘huge, huge’’ scar as ‘‘just a little mark’’ during a quiet time after the mastectomy when she became ‘‘a couch potatoInot having to make decisions.’’ She laughingly remembered thinking at the time that her cats thought that she was another cat, ‘‘They hated it when I got up. My cats thought ‘Oh, we own her. Why is she getting up now?’ That’s what I was, another cat.’’ Shared laughter with others was exemplified when ‘‘Josephine’’ described a discussion she had with others in her neighborhood support group for breast cancer survivors (named ‘‘The Reluctant Sisterhood’’!) about lymphedema: Someone was complaining about how bad her arm lookedIand someone else said ‘‘Well, at our age, our arms look pretty bad anyway.’’ We decided we needed a new support group for ugly upper arms (laughing). Haven’t formed that one yet (laughing)!
Persevering: ‘‘Doing What Has to Be Done’’ The diagnosis was a great shock, but the women emphasized that they neither felt angry nor asked ‘‘why me?’’ when they were told that they had breast cancer. Instead, the initial shock was quickly followed with determination to complete treatment. Goals were set to move ahead despite adversities. Managing cancer was described as ‘‘work.’’ Perseverance manifested as a tenacious commitment to take the many required steps to do the work of treating cancer. During step-by-step accounts of procedures, treatments, and follow-ups, the willingness of ‘‘doing what has to be done’’ to the best of her abilities gave a sense of composure to a situation that may otherwise be overwhelming. As was the case for many women in the sample, ‘‘Josephine’s’’ story exemplified the process of how perseverance and flexibility with challenges during and after her primary treatments were situated in relationships. As common among the participants,
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‘‘Josephine’’ was of an age where she had experienced the death and suffering of family and friends from cancer. ‘‘Josephine’’ and her spouse were close friends with a couple for more than 50 years and the husband had a terminal cancer. Before ‘‘Josephine’’ was diagnosed, the 2 couples had booked tickets to go on a transcontinental train trip of 11 days because the man ‘‘loved trains.’’ ‘‘Josephine’’ intentionally scheduled her RTs to finish the week before the trip. Despite severe and unanticipated fatigue associated with the RT, ‘‘Josephine’’ decided to honor her commitment to do the trip, explaining they ‘‘could have canceled because we had the insuranceIbut we wanted to make that gift to him.’’ Another challenge happened in the shower at 4 o’clock on the day of departure. ‘‘A good sized chunk of skin fell off my breast from the radiation, about the size of at least a quarter. I couldn’t figure out what was laying in the bottom of the shower. As soon as we got to (city in another country), we went to a drug store and got some pads and by the time we got home it was pretty well healed up.’’ Their friend died shortly after the trip. ‘‘Josephine’’ ended the story of this trip saying it was both healing and painful. She considered the incident with the ‘‘chunk of skin falling off’’ to be ‘‘a strange start to the trip, but otherwise pretty normal life, enjoying life, family, and friends.’’ ‘‘Josephine’s’’ husband of many decades was supportive throughout her cancer experience: He accompanied her to the many appointments, they discussed the treatments afterward, and she reported, ‘‘I have never had so many hugs.’’ However, despite finding various aspects of RT scary, she specifically asked her spouse not to accompany her to RT because, ‘‘Enough is enough. I’m doing that.’’ He respected her wish. ‘‘Josephine’’ described persevering with daily RT over 5 weeks, although she became increasingly ‘‘scared’’ to go for RT in the ‘‘the bowels of the basement’’ of the hospital. In addition, she experienced ‘‘some sense of loss of modesty’’ because the hospital gown was revealing and women and men shared the same room while waiting for RT. After persevering through to her last RT, she realized that ‘‘it’s all behind meII don’t have to go down the basement anymore!’’
Constructing Personal Continuation: ‘‘I’m Still Here’’ Meaningful events that happened before the cancer diagnosis were infused throughout the narratives. The women linked these events from the backdrop of their lives with their present cancer experiences to provide a continuation of the self through changing times. For example, ‘‘Hila’’ described how she enjoyed playing poker for many years along with her husband (now deceased) and their children. She found RTs stressful and was grateful that her daughter took her to a casino where they played poker with other people every afternoon after her treatments. When asked how this old and uplifting routine was useful during cancer treatments, she said that she had seen other cancer patients cry in the waiting area. ‘‘Hila’’ described how playing poker served as an effective distraction and was mood altering: I am not sitting in the halls and cry, cry. No, I left (for poker) and I’m happy. (It is) better than sitting and thinking and thinking and thinking, no good. I like it
Resilience Among Older Survivors of Breast Cancer
(poker), and I forgot the radiation when I go there. (And) tomorrow I go againIIt was a good medication! ‘‘Daisy’’ described herself as a lifelong avid reader. ‘‘I wasn’t just a token reader, I was an avid reader.’’ However, with increasing blindness, she said that she was ‘‘reduced to listening to books on tape. It’s not the sameIit’d be much easier to read them than to hear themIbut I’m glad to have it.’’ She can no longer read the information about new prescriptions, so now she asks someone to read it to her because, ‘‘I always had a fantastic memory, really good. And then when I turned eighty it’s not as good as it was, but I’m in the position now of having to memorize because I can’t see them.’’ ‘‘Daisy’’ adapted to breast cancer within the context of larger vulnerability of blindness and comorbid diseases. She described that she moved beyond cancer because it was treated, but ‘‘some things I’ll never get rid of. The biggest blow was losing my eyesight. That was the biggest blow of all.’’ Thus, she rebounded from breast cancer because the disease and its treatments had relatively no effect on her everyday life from her perspective. All the participants had busy lives. Fitting in the many appointments for diagnostic breast cancerYrelated procedures, treatments, and follow-up visits in their already busy lives required active planning. Mastering to balance the new requirements of breast cancer on their time while continuing with well-known and meaningful prediagnostic activities provided self-confidence and stability. For example, keeping commitments such as volunteering, continuing with an old tradition such as Christmas shopping with her sister, or a retired registered dietician continuing to prepare ‘‘3 nutritious meals a day’’ for a much older husband were normalizing experiences.
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Discussion
Throughout the many adaptive challenges of their early cancer trajectory, resilience manifested as a natural and dynamic process within the women’s physical, psychological, and social existence. This multidimensional and interrelated process was simultaneously enacted in the perspective of their lifespan, connecting their past, their present, and their anticipated future. The participants did not glorify aging. They did not underplay losses and tragedies that had occurred over their life spans. Their own cancer diagnosis reactivated memories of family and friends who had cancer, were traumatized by cancer, or had died of the disease. Albeit painful, these introspective connections were steeling effects that helped the participants to move forward. All the women successfully transitioned ‘‘from cancer patient to person’’46(p2608) and reestablished the ‘‘old normal.’’47(p1) Bouncing back, a defining characteristic of resilience, did not simply happen automatically after a first-time encounter with cancer. Instead, regaining balance required tenacity, pragmatism, and dedication to do the work that needed to be done to treat cancer and move on with life. Descriptions of this successful reintegration of their lives showed rebounding despite vulnerabilities, that is, a process that contained both times of increased self-esteem and expressions of vulnerabilities. For some women, Cancer NursingTM, Vol. 39, No. 1, 2016
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the buoyancy associated with resilience involved unconventional behavior as was previously described among older women not affected by a recent adversity.13 The women valued self-reliance while simultaneously facing adversity and processing vulnerable times. However, autonomy may not fully represent the experience for the women of this sample because it suggests giving up affiliations with others to become self-directed. For this sample, new understandings were created during social interactions. These women did not describe an image of resilience as single actors; their words did not reflect rugged individualism. Cancer survivorship science posits that survivorship starts at the time of diagnosis and that the aftermath of the cancer diagnosis is associated with ongoing physical, psychosocial, social, spiritual, and economic needs.26 For this sample, resilience started when the women first suspected a diagnosis of cancer and was continuing during the time of our interviews. Thus, resilience manifested as a process, and ‘‘I’m still here’’ exemplified that the core self continued. For these women, cancer was not a transformational experience. They had well-established identities, and cancer did not change their core selves.48
Study Limitations These findings are the first to represent older women’s personal accounts of resilience after primary, early-stage breast cancer. Although an important first step, constraints of these findings include that recruitment was confined to flyers, mailed invitations, and snowball sampling. Women who were actively engaged in the world may have responded to the invitation to enroll, whereas harder to reach populations, such as women who were not feeling well, would be unlikely to respond to these methods. Thus, sampling error could have excluded vulnerable women because not all older people are resilient after misfortune.49 Also, results from qualitative research are not intended to be generalizable, particularly not in view of the variability of how people experience cancer50 and how older individuals become increasingly heterogeneous with age.25
Implications for Practice and Research
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Adaptation signifies the opportunity for prevention and health promotion. Resilience, a key component of adaptation and coping, is modifiable and amenable to nurturance.4 Uncovering ways to enhance resilience in age-appropriate ways can promote wellness among the growing number of older cancer survivors. Interventions to develop resilience can help older adults age well, not just live longer.18 However, it is easy to get drawn in by societal expectations and to believe that all cancer survivors are resilient, such as is often seen in the popular media. Although it is safe to assume that most older people are resilient to some extent,51 not all older people are resilient.12 Although grateful to be alive, breast cancer survivors have very unique personal experiences adjusting to the trade-offs
of surviving cancer.46 Even cancer survivors who have been cancerfree for many years continued to experience consequences of the disease, including an increased risk of suicide.52 Thus, a healthcare professional can do unanticipated harm by assuming that all breast cancer survivors will verbalize and display resilience, such as evidenced by the women in this sample. Even in the busiest clinical settings, clinicians can buffer stress and help patients develop strengths by providing emotional, informational, and instrumental support. An opportunity to give emotional support is to acknowledge nontraditional expressions of resilience and to allow and promote individual expressions of adaptation. Expecting only the ‘‘inherently conservative nature of resilience’’2(p559) will not help the individual who chooses to explore new paths. Another example of emotional support in the clinician-patient relationship is to value and respond to humor when initiated by the patient. Self-reliance was valued by the participants. Age-appropriate informational support can give choices to enhance autonomy. However, their need for self-reliance may also cause older women not to ask for help. Thus, instead of simply focusing on the healthcare-related information, clinicians can invite expressions of vulnerability by, for example, adapting some of the open-ended questions in Table 1. Other open-ended questions to assess various attributes of resilience have been described.53 Social connectedness strengthened resilience among this sample of older women diagnosed with early-stage breast cancer. An example of instrumental support is that clinicians can expand the clinician-patient relationship and include family and friends who may be present in the office or in the waiting area. Instrumental support to enhance resilience can also include looking beyond individual characteristics to encompass the community. International research with older populations without cancer found that environmental factors and policies should focus on the broader physical factors in communities to promote social engagement.12,54 Women of this sample often described surprise to find themselves fatigued and vulnerable with the primary treatments behind them. Previous research also evidenced that rebounding took longer than some women expected.55 Thus, support is needed in all phases of the cancer trajectory, including posttreatment. Future research needs to focus on how older cancer survivors live out their final decades. Knowledge of the complex biopsychosocial impact of surviving the many diseases called cancer is an emerging phenomenon as the numbers of survivors and new treatments are increasing. Gero-oncology is a salient field for studying resilience to help us understand why some survivors are relatively resistant to the chronic aftermath of a cancer diagnosis. Given the complexity of both cancer and resilience, inquiry will be best served if studied by a mutlidisciplinary team. Although this study included only women and most were from 1 culture, the sample was more culturally diverse than samples of earlier resiliency inquiries.10,13,14,56 Resilience needs to be researched across cultures,57 but culture is only rarely the focus of research on resilience.14,58 The increasing racial diversity of our older population59 in particular calls for future research with older people from different cultures to promote strength-based interventions that are culturally sensitive.
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ACKNOWLEDGMENTS
The author extends her gratitude to Drs MarySue Heilemann, Sandra Harding, Sally Maliski, and Jan Mentes. This work is dedicated to the participants whose narratives are represented here.
References 1. Lavretsky H, Irwin MR. Resilience and aging. Aging Health. 2007;3(3): 309Y323. 2. Aranda K, Zeeman L, Scholes J, Morales AS. The resilient subject: exploring subjectivity, identity and the body in narratives of resilience. Health (London). 2012;16(5):548Y563. 3. Dyer JG, McGuinness TM. Resilience: analysis of the concept. Arch Psychiatr Nurs. 1996;10(5):276Y282. 4. Earvolino-Ramirez M. Resilience: a concept analysis. Nurs Forum. 2007; 42(2):73Y82. 5. Tusaie K, Dyer J. Resilience: a historical review of the construct. Holist Nurs Pract. 2004;18(1):3Y8; quiz 9Y10. 6. Gjerde PF, Block J, Block JH. Egocentrism and ego resiliency: personality characteristics associated with perspective-taking from early childhood to adolescence. J Pers Soc Psychol. 1986;51(2):423Y434. 7. Hartman JL, Turner MG, Daigle LE, Exum ML, Cullen FT. Exploring the gender differences in protective factors: implications for understanding resiliency. Int J Offender Ther Comp Criminol. 2009;53(3):249Y277. 8. Lamond AJ, Depp CA, Allison M, et al. Measurement and predictors of resilience among community-dwelling older women. J Psychiatr Res. 2008; 43(2):148Y154. 9. Windle G, Markland DA, Woods RT. Examination of a theoretical model of psychological resilience in older age. Aging Ment Health. 2008; 12(3):285Y292. 10. Wagnild G, Young HM. Resilience among older women. Image J Nurs Sch. 1990;22(4):252Y255. 11. Ong AD, Bergeman CS, Boker SM. Resilience comes of age: defining features in later adulthood. J Pers. 2009;77(6):1777Y1804. 12. Hildon Z, Montgomery SM, Blane D, Wiggins RD, Netuveli G. Examining resilience of quality of life in the face of health-related and psychosocial adversity at older ages: what is ‘‘right’’ about the way we age? Gerontologist. 2010;50(1):36Y47. 13. Kinsel B. Resilience as adaptation in older women. J Women Aging. 2005;17(3):23Y39. 14. Felten BS. Resilience to a multicultural sample of community-dwelling women older than age 85. Clin Nurs Res. 2000;9(2):102Y123. 15. Netuveli G, Wiggins RD, Montgomery SM, Hildon Z, Blane D. Mental health and resilience at older ages: bouncing back after adversity in the British Household Panel Survey. J Epidemiol Community Health. 2008; 62(11):987Y991. 16. Rutter M. Resilience concepts and findings: implications for family therapy. J Fam Ther. 1999;21:119Y144. 17. Rutter M. From individual differences to resilience: from traits to processes. Paper presented at: 118th Annual Convention of the American Psychological Association; August 13, 2010; San Diego, CA. 18. Whittington FJ. Resilience in late life: emerging trends and future directions. Gerontologist. 2014;54(1):138Y142. 19. Windle G, Bennett KM, Noyes J. A methodological review of resilience measurement scales. Health Qual Life Outcomes. 2011;9:8. 20. Walsh F. Family resilience: a framework for clinical practice. Fam Process. 2003;42(1):1Y18. 21. Felten BS, Hall JM. Conceptualizing resilience in women older than 85. J Gerontol Nurs. 2001;27(11):46Y53. 22. Rowland JH, Baker F. Introduction: resilience of cancer survivors across the lifespan. Cancer. 2005;104(11 suppl):2543Y2548. 23. Pudrovska T. Cancer and mastery: do age and cohort matter? Soc Sci Med. 2010;71(7):1285Y1291. 24. Institute of Medicine. Cancer in Elderly People: Workshop Proceedings. Washington, DC: The National Academic Press; 2007.
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25. Bellizzi KM, Mustian KM, Palesh OG, Diefenbach M. Cancer survivorship and aging: moving the science forward. Cancer. 2008;113(Suppl 12): 3530Y3539. 26. Hewitt ME, Greenfield S, Stovall E, eds. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press; 2006. 27. Mariotto AB, Yabroff KR, Shao Y, Feuer EJ, Brown ML. Projections of the cost of cancer care in the United States: 2010Y2020. J Natl Cancer Inst. 2011;103(2):117Y128. 28. Surveillance epidemiology and end results. 2011. http://seer.cancer.gov/ statfacts/html/breast.html. Accessed February 26, 2015. 29. Silliman RA. When cancer in older adults is undermanaged: the breast cancer story. J Am Geriatr Soc. 2009;57(Suppl 2):S259YS261. 30. Pieters HC, Heilemann MV, Grant M, Maly RC. Older women’s reflections on accessing care across their breast cancer trajectory: navigating beyond the triple barriers. Oncol Nurs Forum. 2011;38(2):175Y184. 31. Molina Y, Yi JC, Martinez-Gutierrez J, Reding KW, Yi-Frazier JP, Rosenberg AR. Resilience among patients across the cancer continuum: diverse perspectives. Clin J Oncol Nurs. 2014;18(1):93Y101. 32. Sharpley CF, Bitsika V, Wootten AC, Christie DR. Does resilience ‘buffer’ against depression in prostate cancer patients? A multi-site replication study. Eur J Cancer Care (Engl). 2014;23(4):545Y552. 33. Min JA, Yoon S, Lee CU, et al Psychological resilience contributes to low emotional distress in cancer patients. Support Care Cancer. 2013;21(9): 2469Y2476. 34. Ryu YM. The factors influencing quality of life in women with breast cancer. Asian Oncol Nurs. 2013;13(3):121Y127. 35. Ha BY, Jung EJ, Choi SY. Effects of resilience, post-traumatic stress disorder on quality of life in patients with breast cancer. Korean J Women Health Nurs. 2014;20(1):83Y91. 36. Charmaz K. Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis. London, England: Sage Publications; 2006. 37. Glaser BG, Strauss AL. The Discovery of Grounded Theory; Strategies for Qualitative Research. Chicago, IL: Aldine Pub Co; 1967. 38. Glaser GG. Theoretical Sensitivity: Advances in the Methodology of Grounded Theory. Mill Valley, CA: Sociology Press; 1978. 39. Strauss AL, Corbin JM. Basics of Qualitative Research: Grounded Theory Procedures and Techniques. Newbury Park, CA: Sage Publications; 1990. 40. Blumer H. Symbolic Interactionism: Perspective and Method. Prentice Hall: Englewood Cliffs, NJ; 1998. 41. Charon JM. Symbolic Interactionism: An Introduction, an Interpretation, an Integration. 9th ed. Pearson Education: Upper Saddle River, NJ; 2007. 42. Schwandt TA. Three epistemological stances for qualitative inquiry: interpretivism, hermeneutics and social constructivism. In: Denzin NK, Lincoln YS, eds. The Landscape of Qualitative Research. 2nd ed. Thousand Oaks, CA: Sage; 2003:292Y331. 43. Frankl VE. Man’s Search for Meaning. 3rd ed. New York: Simon and Schuster; 1984. 44. Haase JE, Peterson SJ. Resilience. In: Peterson SJ, Bredow TS, eds. Middle Range Theories. 3rd ed. Philadelphia, PA: Wolters Kluwar Health; 2013:256Y284. 45. Marshall C, Rossman GB. Designing Qualitative Research. 4th ed. Thousand Oaks, CA: Sage Publications; 2006. 46. Stanton AL, Ganz PA, Rowland JH, Meyerowitz BE, Krupnick JL, Sears SR. Promoting adjustment after treatment for cancer. Cancer. 2005; 104(Suppl 11):2608Y2613. 47. Feuerstein M. Impacting the lives of cancer survivors: reflections on the first year of the journal of cancer survivorship: research and practice. J Cancer Surviv. 2008;2(1):1Y2. 48. Pieters HC, Heilemann MV. ‘‘Once you’re 82 going on 83, surviving has a different meaning’’: older breast cancer survivors reflect on cancer survivorship. Cancer Nurs. 2011;34(2):124Y133. 49. Hildon Z, Smith G, Netuveli G, Blane D. Understanding adversity and resilience at older ages. Sociol Health Illn. 2008;30(5):726Y740. 50. Thorne S, Armstrong EA, Harris SR, et al Patient real-time and 12-month retrospective perceptions of difficult communications in the cancer diagnostic period. Qual Health Res. 2009;19(10):1383Y1394. 51. Wagnild G. Resilience and successful aging: comparison among low and high income older adults. J Gerontol Nurs. 2003;29(12):42Y49.
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52. Schairer C, Brown LM, Chen BE, et al Suicide after breast cancer: an international population-based study of 723,810 women. J Natl Cancer Inst. 2006;98(19):1416Y1419. 53. Wagnild GM. The Resilience Scale User’s Guide. The Resilience Center: Worden, MA; 2009. 54. Wiles JL, Wild K, Kerse N, Allen RE. Resilience from the point of view of older people: ‘there’s still life beyond a funny knee’. Soc Sci Med. 2012; 74(3):416Y424. 55. Rowland JH. What are cancer survivors telling us? Cancer J. 2008; 14(6):361Y368.
56. Dorfman LT, Mendez EC, Osterhaus JK. Stress and resilience in the oral histories of rural older women. J Women Aging. 2009;21(4):303Y316. 57. Ungar M. Researching and theorizing resilience across cultures and contexts. Prev Med. 2012;55(5):387Y389. 58. Goins RT, Gregg JJ, Fiske A. Psychometric properties of the ConnorDavidson Resilience scale with older American Indians: the Native Elder Care Study. Res Aging. 2013;35(2):123Y143. 59. Smith BD, Smith GL, Hurria A, Hortobagyn GN, Buchholz TA. Future of cancer indigence in the United States: burdens upon an aging, changing nation. J Clin Oncol. 2009;27(17):2758Y2765.
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Huibrie C. Pieters, PhD, DPhil, RN
‘‘I’m Still Here’’ Resilience Among Older Survivors of Breast Cancer
K E Y
W O R D S
Background: Cancer presents a severe adversity that calls on intrinsic strength
Adaptation
factors such as resilience. Breast cancer is especially common among older women.
Breast cancer
Understanding the interaction between the mechanisms of resilience and the
Cancer survivorship
psychosocial impact of cancer requires consideration of developmental age.
Gerontology
Objective: This research explores resilience from the point of view of older women
Gero-oncology
who recently completed treatment for early-stage breast cancer. Methods:
Grounded theory
Constructivist grounded theory directed data collection and analysis of 31 personal,
Women
semistructured interviews with 18 women aged 70 to 94 years. Results: Faced with overcoming the adversity of a first cancer experience, participants rebounded and restored balance to their lives with a sense that they did the work of managing cancer with self-efficacy and autonomy. Resilience was evidenced as a multidimensional process containing a natural interaction of attributes. Self-reliance, optimism, and persevering were embedded in human interconnectedness. Conclusions: The process of cancer survivorship was positioned in the larger picture of the joys and hardships of having lived a long life. The core self continued through these changing times, connecting the past, present, and anticipated future, as exemplified by ‘‘I’m still here.’’ Regaining balance required tenacity, pragmatism, and dedication to do the work that needed to be done to treat cancer and move on with life. Implications for Practice: Resilience is a valuable resource in strength-based approaches in healthcare. Practical examples for clinicians who follow a strength-based approach to promote adaptation for the continuing challenges of breast cancer survivorship among
Author Affiliation: School of Nursing, University of California, Los Angeles. This work was supported by funding from the Oncology Nursing Society Foundation and Sigma Theta Tau International. The author has no conflicts of interest to disclose.
Correspondence: Huibrie C. Pieters, PhD, DPhil, RN, UCLA School of Nursing, 4-956 Factor Building, Box 951702, Los Angeles, CA 90095 ([email protected]). Accepted for publication January 19, 2015. DOI: 10.1097/NCC.0000000000000248
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older women include acknowledging unique individual expressions of resilience. Gero-oncology is a salient field for multidisciplinary teams who seek to study resilience.
R
esilience is a complex phenomenon that spans various professional disciplines. Defined succinctly, resilience is the positive adaptation to adversity. Within healthrelated literature, individual resilience applies to physiological aspects of stress and psychosocial coping1 and is generally viewed as a valuable resource in strength-based approaches of health to optimize adaptation.2 Concept analyses of the psychosocial aspects of the construct show inconsistency about the defining attributes of resilience3Y5 and variations with gender, age, and culture.5Y8 Among people of both genders older than 65 years, characteristics that evidence resilience are altruism, commitment, dynamism, faith, and humor,1 although the construct remains to be adequately validated.9 Resilience from the unique perspectives of older women has been evidenced by equanimity, perseverance, self-reliance, meaningfulness, existential aloneness,10 social connectedness,11,12 taking challenges head on, and a spiritual grounding.13 Women in the oldest old age group (985 years) described resilience as determination, learning from earlier adversities, accessing healthcare, family support, and caring for themselves and others.14 A sentinel article described resilience as a constellation of innate personality traits that is activated in response to a stressor.6 More recently, the notion that resilience is a fixed personality trait was denied in favor of resilience as a multidimensional process that operates temporally before, during, and after an adverse event15Y18; resilience is both dynamic and modifiable.4,5 However, resilience is ‘‘a splintered concept,’’12(pp36) and the controversy about the conceptual clarity of the phenomenon continues.2 The psychometric properties, including conceptual adequacy, of measurement scales are incomplete.19 Despite controversy about the mechanisms of resilience, agreement exists as to its outcomes. Essential consequences are bouncing back and continuing to engage in life4 despite the major risk for developing psychopathology.16 Effective coping and positive adaptation are primary outcomes, along with the perception that hardship was overcome, resourcefulness was gained, and that mastery of future life challenges is possible.3,4,20 Other consequences of resilience, finding meaning and purpose, reflected the unique way resilient individuals appraise environmental hazards.10,16 Among older women, resilience presented as a determination to maintain, reach, or recover emotional and physical health after an overwhelming loss or illness.21 Balance was restored after a threatening event and the experience was integrated into the backdrop of all previous life experiences.10 A diagnosis of cancer presents a severe adversity that calls on intrinsic strength factors such as resilience, but understanding the psychosocial impact of cancer requires consideration of developmental age22 and cohort effects.23 Older people experience cancer in the context of normal aging.24 However, experiences of geriatric oncology patients are greatly understudied.24Y26 Breast cancer, the most common cancer in women worldwide, is especially common among older women. The ‘‘demographic
Resilience Among Older Survivors of Breast Cancer
imperative’’18(p138) of our aging society is associated with the expectation that new cases of breast cancer among women 65 years or above will increase dramatically from 1 068 000 in 2010 to 2 858 000 in 2020,27 with 20% of these women 75 years or above.28 Age 65 years or older is a strong and independent risk factor for dying of complications of breast cancer itself; the breast cancer mortality rate among older women is disproportionally high compared with younger women.29 Among this underrepresented and high-risk population, breast cancer presents specific age-related challenges, such as preexisting comorbid diseases and social constructions of breast cancer associated with prolonged suffering and death.30 This cumulative stress may be countered by protective factors such as resilience to increase well-being. Although resilience has been studied among younger people across various stages of the cancer trajectory31 and found to be negatively associated with emotional distress,32 depression,33 quality of life34 and posttraumatic stress disorder,35 resilience is a relatively new concept in gerontology.18 There is a dearth of knowledge regarding how resilience is experienced and evidenced in a geriatric-oncology sample of women adapting to breast cancer. Therefore, the purpose of this research is to explore and describe the adaptational experiences of women 70 years or older who recently completed treatment for early-stage breast cancer from the perspective of the women themselves.
n
Design and Methods
All aspects of the research were directed by constructivist grounded theory.36 Grounded theory was first introduced Glaser and Strauss37 and then further explained by Glaser38; it was later expanded by Strauss and Corbin39 as a systematic process to generate theory based on qualitative data. The research methodology assumes that humans are practical beings who interact with each other,40 dynamically act back on their surroundings, and respond to what is useful and therefore meaningful.41 Constructivism advances classical grounded theory and informs assumptions in ways that are particularly suited to research about resilience. With social constructivism, human beings construct knowledge and modify their interpretations in the light of new experiences.42(p305) The interpretation of a situation has a meaningful effect on its outcome.43 Constructivism also posits that objective knowledge and truth are the results of perspective,36 which is compatible with an exploratory study of the phenomenon of resilience. Indeed, grounded theory has been used to explore resilience, albeit with younger age groups.44(p262) Underlying assumptions for the current research included that a diagnosis of breast cancer among older women presented an unanticipated disruption to life and added a major risk to the ongoing challenges of adapting to aging itself. Also, the cancer journey was not an acontextual, singular life event but needed to be studied in the context of unique age-related stressors.30 Cancer NursingTM, Vol. 39, No. 1, 2016
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Furthermore, 3 contextual influences (being diagnosed with a life-threatening disease, being female, and being older) contributed to marginalizing and silencing older women who were diagnosed with breast cancer.
Recruitment, Data Collection, and Analysis After approval was received from the institutional review board at the University of California, Los Angeles, recruitment flyers displayed at various sites, mailings from a breast center, and snowball sampling45 were used to recruit women in metropolitan areas of Los Angeles and suburban areas of Southern California. Eligible women were 70 years or older and had completed treatment for primary, early-stage breast cancer within the past 3 to 15 months. Women who were English speaking and willing and able to articulate their experiences were welcome to participate. Of 35 women who called, 18 were eligible and all 18 agreed to participate. Women who were not eligible completed treatment more than 15 months ago (n = 9), had a history of previous cancers (n = 5), were younger than 70 years (n = 1), or were not able to articulate in English (n = 2). Enrollment ceased with data saturation, the point where no new dimensions were found in the data.36 Recruitment, screening for eligibility, and interviewing were done by the author, a doctoral-prepared oncology nurse in her mid-50s with previous experience in grounded theory methodology. Data collection occurred through in-depth interviewing at a private place of the woman’s choosing. Semistructured questions, purposefully developed from published literature and refined during a pilot study, allowed stories of adaptation to emerge during interviews. Neutral questions were asked about perceived adaptation and lack of adaptation across the cancer trajectory to guard against possible bias that lauds resilience. Questions were formed to avoid using the word resilience; in fact, the word was never used in any interview by either the participants or the researcher. Thus, open-ended questions invited descriptions of what the participants potentially perceived as a failure to adapt without feeling obligated to only paint a bright picture (for exemplars, see Table 1). The interview itself was
favorably received, as evidenced by an apparent strong desire to talk and expressions of gratitude for the opportunity to describe cancer-related experiences. Thirteen women were invited and agreed to second interviews. The second interviews built on the themes generated from the first interviews to give depth and breadth of insight to characteristics of adaptation after breast cancer. Because a relatively recent cancer experience is a major life disruption, interviews proceeded with sensitivity and attention to emotional distress. The total of 31 interviews lasted between 52 and 170 minutes (x¯ = 106 minutes). Participants received $50 compensation per interview. To ensure credibility, interviews were audiotaped, transcribed verbatim, and then checked to ensure accuracy. Data analysis for the first and second interviews followed the systematic process of constructivist grounded theory: constant comparison involved initial coding, followed by focused coding, which led to theoretical coding to find the common voice across cases.36 In the tradition of constructivism, critical self-reflexivity to minimize researcher bias was an integral part of the entire research process. Field notes, memos, and diagrams were used throughout data collection and analysis to conceptualize data in various ways. To enhance rigor, accountability, and depth of analysis, collaborative analysis was done with qualitative researchers through crosscomparison of initial and theoretical coding on 18 of the interviews. This triangulation involved independent coding by the author and another analyst, followed by comparison and discussion of data with a continual reflexive stance to check assumptions made by researchers. The 18 women were 76 years of age on average and had completed treatment 8.5 months earlier. The participants reported the stage of the breast cancer as ductal carcinoma in situ (n = 1), Stage I (n = 4), Stage II (n = 4), Stage III (n = 2), or unknown (n = 7). Most women received more than 1 treatment, including lumpectomy (n = 12), unilateral (n = 5) or bilateral (n = 1) mastectomy, radiation treatment (RT) (n = 12), and adjuvant hormonal therapy (n = 11). Fifteen participants reported at least 1 preexisting chronic disease. Eleven women self-identified as white; 2, as Latinas; and 5 as African American/black, Chinese,
Table 1 & Examples of Interview Questions and Related Prompts Question
Prompts
Now that you think back, what did you not manage well, or could perhaps have managed better, when (*) happened? 1. What practical difference did it make when you did that? 2. How did doing (*) make a difference or how did it not make a difference? What do you think made it possible for you, to manage (*)? 1. Can you give me an everyday example of how you managed that? 2. Who or what were the people or things that helped you deal with that? How did you solve a problem like that? 1. How did you know that you managed that challenge well? 2. Can you give me an example of that? Can you tell me about a time when you had to deal with a major How were you somehow able to get through it or in which ways are hardship after you had finished cancer treatment? you are still challenged with this major adversity?
Can you tell me about how you got through that difficult time when (*) happened? In your experience, how was doing (*) useful, or how was it less helpful?
(*) denotes women’s own words preceding the question, such as ‘‘you were so shocked to hear that you had breast cancer’’ or ‘‘learning so many new facts about breast cancer in a hurry.’’
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Filipino, Indian, or Persian. Six women were immigrants or born to immigrant parents. More characteristics about the context of the sample are presented in Table 2.
n
Results
Breast cancer was experienced from the backdrop of having lived long lives that contained both joys and hardships. Past adversities that called for adaptation included the deaths of dearly beloved people such as spouses and children, a sibling who died in a war, a child who committed suicide, and old friends and family who had died of cancer. In addition to the breast cancer diagnosis, some of the recent events that threatened the fabric of the women’s lives at the time of our interview included enduring poverty and being the sole caregiver for a frail spouse. A field note written after an interview showed how being a woman who had a daughter who was recently diagnosed with cancer was stressful: ‘‘I was early, so I was waiting in the car when a woman came out of the home and invited me inside. She looked like a chemo patient so when I saw her I thought that this must be ‘Grace,’ but I was confused because when I spoke with ‘Grace’ to make our appointment, she said that she had just had her 1-year follow-up and ‘all went well’ (and she did not receive chemo anyway!) Well, the woman introduced herself as ‘Grace’s’ daughter! During our interview, ‘Grace’ spoke about her daughter who is receiving treatment for ‘a much more serious cancer,’ diagnosed when she was receiving her RT. This experience leaves me very aware that 2 of the women
Table 2 & Sociodemographic Characteristics (N=18)
Characteristics Marital status Married or living as married Divorced Widowed Never married Education Some high school Graduated from high school Some college Bachelor’s degree Some graduate school Graduate degree Annual household income G$20 999 $21 000Y$40 999 $41 000Y$60 999 $61 000Y$80 999 $81 000Y$100 999 9$101 000 Living situation Live alone in home or apartment With spouse in home With family member(s) With friends Family members live with woman
N
x¯
6 6 5 1
50 29 8
2 9 2 1 1 3 8 3 3 0 2 2 5 5 5 1 2
Resilience Among Older Survivors of Breast Cancer
this far has daughters who were diagnosed with cancer within months of their mothers’ diagnosis. This must be very hard for her (she is especially close to this daughter), but ‘Grace’ is certainly optimistic about a future free of cancer. She looks forward to do much more sewing for her family and friends from her sewing room with the beautiful view.’’ Starting with the shock of being diagnosed with breast cancer and moving to the positive outcome of restoring balance in their lives, resilience manifested as a multidimensional construct. Narratives evidenced a fluid interaction of internal and external attributes of resilience. Internal attributes such as self-reliance and positivism were seamlessly incorporated with engaging in meaningful interactions with other people. For this sample, the telling of their stories provided an opportunity to position the process of cancer in the larger picture of life and thus frame continuity of their core self through changing times.
Being Self-Reliant: ‘‘I’ve Learned to Get Strong Just by Doing For Myself’’ Although personal agency was mostly relationally based, all the women described that overcoming the adversity of what they perceived as a deadly diagnosis was not dependent on others. In conjunction with relating to others, the woman herself stood out as the main person in her story who confidently and competently did her inner work alone. ‘‘Iris’’ described nurturing herself while washing the dishes and working against the fear of cancer recurrence: Sometime, I (am) washing dishes and I started thinking of it (recurrence)Iit can come like that (snaps fingers)I(then) I say to my mind, ‘‘I have to, I have to forget this.’’ I take care of myself and that’s itIthat helps me, it does. Uniqueness of individual circumstances that called for selfreliance and the creation of an unconventional path during changing times were emphatically described. ‘‘Annie’’ exemplified how she valued her ability to create new coping strategies for her particular situation. With no family or supportive friends, ‘‘Annie’’ recognized that she needed to manage her cancer trajectory alone, ‘‘I just knew that there wasn’t going to be anybody out there for me and I had to do it for me.’’ She adapted by valuing her car, ‘‘a beautiful car with a most beautiful sound system’’ as her best friend that allowed her independence. She said: I’ve learned to get strong just by doing for myselfII’ve just turned my thoughts into my car, it’s my best friend, it’s gonna get me aroundII can go to the doctor because I get to drive my car and I just kind of like turned it into my friendVit’s a crazy way to think, but it waits there for me, and then when I’m ready to go home, it never fails meI my car settles me down and I get there (laughs). With 1 exception, women who were married or partnered and those with supportive family, all told their loved ones about the breast cancer soon after the diagnosis. These women independently planned for the best time to break the bad news to limit upsetting family members. Framed by ‘‘Keisha,’’ as ‘‘each Cancer NursingTM, Vol. 39, No. 1, 2016
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person has a unique diagnosis,’’ women naturally reflected that they themselves made treatment decisions and that they made the right decisions for their individual circumstances. Participants with supportive spouses valued them as sounding boards. However, these women also emphasized their independent decision making about treatment options. For example, ‘‘Martha’’ said about her husband of approximately 5 decades, ‘‘Of course we talked about it (cancer), both of us talked about it, but I knew what I was feeling. I had to make the decision. It was my body and he was supporting me.’’ Furthermore, self-reliance was manifested in deciding who to invite (and not to invite) to accompany the women to their clinical appointments. Some participants took support people to appointments, but often, they preferred that this person wait outside while the woman consulted with the physician. Although women appreciated the company of the support person, some experiences were preferably faced alone. Perceptions of such selfreliance were described with pride. Memories of characteristic self-reliance and adaptation before the cancer diagnosis were naturally and confidently portrayed by all of the women. ‘‘Daisy,’’ who, because of failing vision, could no longer read telephone numbers, relied on her ‘‘positive nature’’ and used her memory that ‘‘was always quite excellent’’ to memorize telephone numbers to maintain regular contact with old friends and family. However, in the context of aging, the women had opposing views of autonomy. At age 94 years, ‘‘Isadora’’ readily admits, ‘‘I can’t do much anymore. I haven’t been able to for a long time because of being so oldIIt’s hard for me to get ready and go out and do stuff.’’ However, cancer had not changed ‘‘Isadora’s’’ sense of self-reliance, ‘‘I’ve been self-sufficient all my life.’’ She used age to buffer the emotional impact of the cancer experience, ‘‘At my age, losing a breast, it’s just something that happenedIit didn’t hold me back or stop me.’’
Seeing the Bright Side: ‘‘I’d Rather Make Lemonade’’ Optimism appeared in self-descriptions such as ‘‘lucky’’ and ‘‘fortunate’’ that were laced throughout the narratives. Hope emerged as a dimension of this optimism. The women all spoke about possible cancer recurrence, but they were optimistic and planned for a future without cancer. The women commented with humility and gratitude about their relative good fortune when they described people who were perceived to be less fortunate than themselves that they observed in oncology waiting areas (such as those being treated for advanced cancers, the uninsured, or patients with hair loss or in wheelchairs). Comparing themselves with others who also experienced breast cancer, the participants were encouraged and optimistic when those women received more RTs or had more drainage tubes after a mastectomy. When the women noticed their lumpectomy incision healed without noticeable physical changes, they felt hope. Comparing themselves favorably with other people who had not experienced cancer also helped adaptation. ‘‘Raya’’ compared her ‘‘huge, huge’’ mastectomy scar with ‘‘the hundreds and thousands of our young men and women who
are fightingIand some of them are maimed and others have died.’’ She then described how comparing her situation with these warriors helped her to see she that is not alone and helped facilitate her adaptation: And I thought that, ‘‘my goodness, what I endure is a little scar and I’ve had 74 years (laughs) on this earth and what they’re doing is just amazing, and so I can take this scar.’’ Now, I just see it’s just a mark that’s there, just a mark. Humor was another dimension of optimism. Each participant narrated the funny side and consequently made the best of a potentially sad situation. Enjoying humor was described and also effectively used to socially engage the researcher during our interviews such as when ‘‘Doreen’’ said that ‘‘I call one (breast) Perky Patty and the other Saggy Maggy’’ because the 1 breast is still swollen after 30 RTs. However, displaying humor was not frequently evidenced by telling jokes. Instead, humor was represented as the ability to emphasize the lighter side of hardships, such as when ‘‘Keisha’’ laughingly concluded about the many challenges of her cancer experience, ‘‘It’s lifeIif you don’t take what they give you and make lemonade, then you’re gonna have some sour mess to deal with. I’d rather make lemonade.’’ The joy of humor occurred when women were alone with their thoughts and also while enjoying humor with others. ‘‘Raya’’ reframed her ‘‘huge, huge’’ scar as ‘‘just a little mark’’ during a quiet time after the mastectomy when she became ‘‘a couch potatoInot having to make decisions.’’ She laughingly remembered thinking at the time that her cats thought that she was another cat, ‘‘They hated it when I got up. My cats thought ‘Oh, we own her. Why is she getting up now?’ That’s what I was, another cat.’’ Shared laughter with others was exemplified when ‘‘Josephine’’ described a discussion she had with others in her neighborhood support group for breast cancer survivors (named ‘‘The Reluctant Sisterhood’’!) about lymphedema: Someone was complaining about how bad her arm lookedIand someone else said ‘‘Well, at our age, our arms look pretty bad anyway.’’ We decided we needed a new support group for ugly upper arms (laughing). Haven’t formed that one yet (laughing)!
Persevering: ‘‘Doing What Has to Be Done’’ The diagnosis was a great shock, but the women emphasized that they neither felt angry nor asked ‘‘why me?’’ when they were told that they had breast cancer. Instead, the initial shock was quickly followed with determination to complete treatment. Goals were set to move ahead despite adversities. Managing cancer was described as ‘‘work.’’ Perseverance manifested as a tenacious commitment to take the many required steps to do the work of treating cancer. During step-by-step accounts of procedures, treatments, and follow-ups, the willingness of ‘‘doing what has to be done’’ to the best of her abilities gave a sense of composure to a situation that may otherwise be overwhelming. As was the case for many women in the sample, ‘‘Josephine’s’’ story exemplified the process of how perseverance and flexibility with challenges during and after her primary treatments were situated in relationships. As common among the participants,
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‘‘Josephine’’ was of an age where she had experienced the death and suffering of family and friends from cancer. ‘‘Josephine’’ and her spouse were close friends with a couple for more than 50 years and the husband had a terminal cancer. Before ‘‘Josephine’’ was diagnosed, the 2 couples had booked tickets to go on a transcontinental train trip of 11 days because the man ‘‘loved trains.’’ ‘‘Josephine’’ intentionally scheduled her RTs to finish the week before the trip. Despite severe and unanticipated fatigue associated with the RT, ‘‘Josephine’’ decided to honor her commitment to do the trip, explaining they ‘‘could have canceled because we had the insuranceIbut we wanted to make that gift to him.’’ Another challenge happened in the shower at 4 o’clock on the day of departure. ‘‘A good sized chunk of skin fell off my breast from the radiation, about the size of at least a quarter. I couldn’t figure out what was laying in the bottom of the shower. As soon as we got to (city in another country), we went to a drug store and got some pads and by the time we got home it was pretty well healed up.’’ Their friend died shortly after the trip. ‘‘Josephine’’ ended the story of this trip saying it was both healing and painful. She considered the incident with the ‘‘chunk of skin falling off’’ to be ‘‘a strange start to the trip, but otherwise pretty normal life, enjoying life, family, and friends.’’ ‘‘Josephine’s’’ husband of many decades was supportive throughout her cancer experience: He accompanied her to the many appointments, they discussed the treatments afterward, and she reported, ‘‘I have never had so many hugs.’’ However, despite finding various aspects of RT scary, she specifically asked her spouse not to accompany her to RT because, ‘‘Enough is enough. I’m doing that.’’ He respected her wish. ‘‘Josephine’’ described persevering with daily RT over 5 weeks, although she became increasingly ‘‘scared’’ to go for RT in the ‘‘the bowels of the basement’’ of the hospital. In addition, she experienced ‘‘some sense of loss of modesty’’ because the hospital gown was revealing and women and men shared the same room while waiting for RT. After persevering through to her last RT, she realized that ‘‘it’s all behind meII don’t have to go down the basement anymore!’’
Constructing Personal Continuation: ‘‘I’m Still Here’’ Meaningful events that happened before the cancer diagnosis were infused throughout the narratives. The women linked these events from the backdrop of their lives with their present cancer experiences to provide a continuation of the self through changing times. For example, ‘‘Hila’’ described how she enjoyed playing poker for many years along with her husband (now deceased) and their children. She found RTs stressful and was grateful that her daughter took her to a casino where they played poker with other people every afternoon after her treatments. When asked how this old and uplifting routine was useful during cancer treatments, she said that she had seen other cancer patients cry in the waiting area. ‘‘Hila’’ described how playing poker served as an effective distraction and was mood altering: I am not sitting in the halls and cry, cry. No, I left (for poker) and I’m happy. (It is) better than sitting and thinking and thinking and thinking, no good. I like it
Resilience Among Older Survivors of Breast Cancer
(poker), and I forgot the radiation when I go there. (And) tomorrow I go againIIt was a good medication! ‘‘Daisy’’ described herself as a lifelong avid reader. ‘‘I wasn’t just a token reader, I was an avid reader.’’ However, with increasing blindness, she said that she was ‘‘reduced to listening to books on tape. It’s not the sameIit’d be much easier to read them than to hear themIbut I’m glad to have it.’’ She can no longer read the information about new prescriptions, so now she asks someone to read it to her because, ‘‘I always had a fantastic memory, really good. And then when I turned eighty it’s not as good as it was, but I’m in the position now of having to memorize because I can’t see them.’’ ‘‘Daisy’’ adapted to breast cancer within the context of larger vulnerability of blindness and comorbid diseases. She described that she moved beyond cancer because it was treated, but ‘‘some things I’ll never get rid of. The biggest blow was losing my eyesight. That was the biggest blow of all.’’ Thus, she rebounded from breast cancer because the disease and its treatments had relatively no effect on her everyday life from her perspective. All the participants had busy lives. Fitting in the many appointments for diagnostic breast cancerYrelated procedures, treatments, and follow-up visits in their already busy lives required active planning. Mastering to balance the new requirements of breast cancer on their time while continuing with well-known and meaningful prediagnostic activities provided self-confidence and stability. For example, keeping commitments such as volunteering, continuing with an old tradition such as Christmas shopping with her sister, or a retired registered dietician continuing to prepare ‘‘3 nutritious meals a day’’ for a much older husband were normalizing experiences.
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Discussion
Throughout the many adaptive challenges of their early cancer trajectory, resilience manifested as a natural and dynamic process within the women’s physical, psychological, and social existence. This multidimensional and interrelated process was simultaneously enacted in the perspective of their lifespan, connecting their past, their present, and their anticipated future. The participants did not glorify aging. They did not underplay losses and tragedies that had occurred over their life spans. Their own cancer diagnosis reactivated memories of family and friends who had cancer, were traumatized by cancer, or had died of the disease. Albeit painful, these introspective connections were steeling effects that helped the participants to move forward. All the women successfully transitioned ‘‘from cancer patient to person’’46(p2608) and reestablished the ‘‘old normal.’’47(p1) Bouncing back, a defining characteristic of resilience, did not simply happen automatically after a first-time encounter with cancer. Instead, regaining balance required tenacity, pragmatism, and dedication to do the work that needed to be done to treat cancer and move on with life. Descriptions of this successful reintegration of their lives showed rebounding despite vulnerabilities, that is, a process that contained both times of increased self-esteem and expressions of vulnerabilities. For some women, Cancer NursingTM, Vol. 39, No. 1, 2016
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the buoyancy associated with resilience involved unconventional behavior as was previously described among older women not affected by a recent adversity.13 The women valued self-reliance while simultaneously facing adversity and processing vulnerable times. However, autonomy may not fully represent the experience for the women of this sample because it suggests giving up affiliations with others to become self-directed. For this sample, new understandings were created during social interactions. These women did not describe an image of resilience as single actors; their words did not reflect rugged individualism. Cancer survivorship science posits that survivorship starts at the time of diagnosis and that the aftermath of the cancer diagnosis is associated with ongoing physical, psychosocial, social, spiritual, and economic needs.26 For this sample, resilience started when the women first suspected a diagnosis of cancer and was continuing during the time of our interviews. Thus, resilience manifested as a process, and ‘‘I’m still here’’ exemplified that the core self continued. For these women, cancer was not a transformational experience. They had well-established identities, and cancer did not change their core selves.48
Study Limitations These findings are the first to represent older women’s personal accounts of resilience after primary, early-stage breast cancer. Although an important first step, constraints of these findings include that recruitment was confined to flyers, mailed invitations, and snowball sampling. Women who were actively engaged in the world may have responded to the invitation to enroll, whereas harder to reach populations, such as women who were not feeling well, would be unlikely to respond to these methods. Thus, sampling error could have excluded vulnerable women because not all older people are resilient after misfortune.49 Also, results from qualitative research are not intended to be generalizable, particularly not in view of the variability of how people experience cancer50 and how older individuals become increasingly heterogeneous with age.25
Implications for Practice and Research
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Adaptation signifies the opportunity for prevention and health promotion. Resilience, a key component of adaptation and coping, is modifiable and amenable to nurturance.4 Uncovering ways to enhance resilience in age-appropriate ways can promote wellness among the growing number of older cancer survivors. Interventions to develop resilience can help older adults age well, not just live longer.18 However, it is easy to get drawn in by societal expectations and to believe that all cancer survivors are resilient, such as is often seen in the popular media. Although it is safe to assume that most older people are resilient to some extent,51 not all older people are resilient.12 Although grateful to be alive, breast cancer survivors have very unique personal experiences adjusting to the trade-offs
of surviving cancer.46 Even cancer survivors who have been cancerfree for many years continued to experience consequences of the disease, including an increased risk of suicide.52 Thus, a healthcare professional can do unanticipated harm by assuming that all breast cancer survivors will verbalize and display resilience, such as evidenced by the women in this sample. Even in the busiest clinical settings, clinicians can buffer stress and help patients develop strengths by providing emotional, informational, and instrumental support. An opportunity to give emotional support is to acknowledge nontraditional expressions of resilience and to allow and promote individual expressions of adaptation. Expecting only the ‘‘inherently conservative nature of resilience’’2(p559) will not help the individual who chooses to explore new paths. Another example of emotional support in the clinician-patient relationship is to value and respond to humor when initiated by the patient. Self-reliance was valued by the participants. Age-appropriate informational support can give choices to enhance autonomy. However, their need for self-reliance may also cause older women not to ask for help. Thus, instead of simply focusing on the healthcare-related information, clinicians can invite expressions of vulnerability by, for example, adapting some of the open-ended questions in Table 1. Other open-ended questions to assess various attributes of resilience have been described.53 Social connectedness strengthened resilience among this sample of older women diagnosed with early-stage breast cancer. An example of instrumental support is that clinicians can expand the clinician-patient relationship and include family and friends who may be present in the office or in the waiting area. Instrumental support to enhance resilience can also include looking beyond individual characteristics to encompass the community. International research with older populations without cancer found that environmental factors and policies should focus on the broader physical factors in communities to promote social engagement.12,54 Women of this sample often described surprise to find themselves fatigued and vulnerable with the primary treatments behind them. Previous research also evidenced that rebounding took longer than some women expected.55 Thus, support is needed in all phases of the cancer trajectory, including posttreatment. Future research needs to focus on how older cancer survivors live out their final decades. Knowledge of the complex biopsychosocial impact of surviving the many diseases called cancer is an emerging phenomenon as the numbers of survivors and new treatments are increasing. Gero-oncology is a salient field for studying resilience to help us understand why some survivors are relatively resistant to the chronic aftermath of a cancer diagnosis. Given the complexity of both cancer and resilience, inquiry will be best served if studied by a mutlidisciplinary team. Although this study included only women and most were from 1 culture, the sample was more culturally diverse than samples of earlier resiliency inquiries.10,13,14,56 Resilience needs to be researched across cultures,57 but culture is only rarely the focus of research on resilience.14,58 The increasing racial diversity of our older population59 in particular calls for future research with older people from different cultures to promote strength-based interventions that are culturally sensitive.
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ACKNOWLEDGMENTS
The author extends her gratitude to Drs MarySue Heilemann, Sandra Harding, Sally Maliski, and Jan Mentes. This work is dedicated to the participants whose narratives are represented here.
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