J Cancer Surviv DOI 10.1007/s11764-014-0387-x

The experience of cognitive change in women with breast cancer following chemotherapy Mary Louise Kanaskie & Susan J. Loeb

Received: 2 April 2014 / Accepted: 20 July 2014 # Springer Science+Business Media New York 2014

Abstract Purpose Change in cognitive function is one side effect of chemotherapy reported in some breast cancer survivors sometimes years after treatment. These symptoms include subtle changes in memory, concentration, and executive functioning. The purpose of this study was to uncover the meaning of cognitive change in women with breast cancer, how symptoms are experienced and become evident, how symptoms impact roles in personal and professional lives, and how women cope with these changes. Methods An interpretive phenomenological study was conducted with seven women with breast cancer, between the ages of 42–59, who had completed standard chemotherapy treatment within the past 12 months. Participants completed two in-depth semistructured interviews 1 month apart and maintained a written journal. Results van Manen’s framework for interpretive phenomenology revealed five essential themes: noticing the difference, experiencing cognitive changes, interacting socially, coping, and looking forward. Analysis also includes a description of the phenomenon in relation to the lifeworld existentials of lived space, lived body, lived time, and lived human relation. Conclusions The experience of cognitive change could not be isolated or studied separately from the context of the women’s reality of having breast cancer. Implications for Cancer Survivors This study provides clarity related to the impact of cognitive change and how women

M. L. Kanaskie (*) Nursing Education and Professional Development, Penn State Hershey Medical Center, Hershey, PA 17033, USA e-mail: [email protected] S. J. Loeb College of Nursing, The Pennsylvania State University, University Park, PA 16802, USA

cope with these changes in relation to their daily roles and responsibilities. Information is provided that elucidates the effect on employment issues that can influence financial and social well-being of women who are breast cancer survivors living with chemotherapy-related cognitive changes. Keywords Breast cancer . Chemobrain . Chemotherapy-related cognitive change . Chemotherapy side effects . Cognitive change . Phenomenology

Background Breast cancer survival rates have steadily improved in recent years [1]. Successful treatment of some stages of breast cancer is often dependent upon the administration of chemotherapy agents. Unfortunately, these life-saving drugs are also known to cause a variety of side effects, some debilitating and others life threatening. Change in cognitive function is one side effect of chemotherapy that has been reported in some breast cancer survivors [2, 3]. Reports indicate that between 16 and 50 % of women receiving chemotherapy for breast cancer experience symptoms of cognitive impairment [4]. Symptoms include subtle changes in memory, concentration, and some higher order processes that include psychomotor speed and executive functioning [3, 5–8]. The duration of symptoms may extend years beyond completion of treatment [9, 10]. Although the symptoms are subtle, patients who report cognitive changes are very aware of the differences in their abilities to think clearly [11, 12]. Some of the symptoms of cognitive change may be frightening and lead to emotional distress [13, 14]. In addition, the resulting physical and psychological consequences can negatively impact quality of life [15–18]. Furthermore, the potential for changes in cognition is seldom discussed with patients prior to treatment and patients receiving treatment with chemotherapy are not routinely

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evaluated for these changes [19]. Research focusing on the impact of cognitive change following chemotherapy and how women cope with these changes is needed to direct meaningful and timely interventions to improve quality of life for cancer survivors. Several researchers have used qualitative methods to study cognitive change following chemotherapy [18, 20, 21]. Interview responses related to the impact of cognitive change on work, social networks, and health-care response among breast cancer survivors have been explained [20]. Descriptions of the experience of chemotherapy-related cognitive impairment in women with breast cancer and how women need to receive information before and after treatment have been identified [21]. Additionally, the impact of perceived cognitive impairment in women with breast cancer on self, relationships, daily functioning, and overall life satisfaction has been reported [18]. The aims of this study were to better understand the lived experience of cognitive change following chemotherapy in women with breast cancer and to more fully elucidate the impact of the phenomenon on personal and social relationships and how women cope with these changes in relation to their daily roles and responsibilities.

Methods Phenomenological framework van Manen’s [22] approach to interpretive phenomenological research was used to uncover the meaning of the lived experience of cognitive change following chemotherapy in breast cancer survivors. The philosophical threads of this approach are consistent throughout the descriptions of the research design and procedures. Phenomenological analysis requires that the researcher recognize preexisting assumptions and preestablished interpretations of the phenomena of interest. Suspending one’s beliefs so that they are brought to one’s consciousness enables the awareness of their potential impact on interpretation of the phenomenon [22]. Bracketing, or suspending one’s beliefs and biases, is an iterative process that is intentionally performed [23]. In this study, intentional suspension was achieved at each step of the research process. Procedure A purposive sample of women with breast cancer between the ages of 21 to 60, who had completed standard chemotherapy treatment within the past 12 months and had reported concern about cognitive changes, was recruited. This age group was selected because of the potential for competing demands such as parenting, elder caregiving, and employment-related responsibilities which could make the experience of cognitive changes following chemotherapy particularly challenging.

Exclusion criteria included chemotherapy prior to current regimen, documented evidence of distant metastasis, and history of any neurological disease. Data collection occurred between November 2011 and October 2012. Participant recruitment included Central Pennsylvania Breast Cancer Support Groups and The Penn State Hershey Medical Center’s Breast Care Center. Approval for the use of human subjects was obtained through the institutional review board. All study participants provided signed informed consent under principles of full disclosure. Each woman participated in two in-depth semistructured interviews 1 month apart and maintained a written journal. Interview questions used as prompts were based on the following domains of cognitive function: executive function, attention, concentration, memory and recall, and processing. The interview guide is presented in Table 1. Pocket size journals were provided and subjects were encouraged to make entries concerning any experiences related to cognitive difficulties during the month between interviews. The journal entries were used at the opening of the second interview to Table 1 Interview guide Opening questions Tell me about what you’ve lived with since your breast cancer treatment began. Describe a typical day in detail when you’ve experienced cognitive difficulties. Follow-up questions After the participant exhausts her response to these opening questions, she will be prompted by the following questions: Tell me about a time when you had difficulty with memory? • How would you describe this experience? • How did you know what was happening? • How did you feel? Tell me about a time when you had difficulty with concentration? • How would you describe this experience? • How did you know what was happening? • How did you feel? Tell me about a time when you had difficulty with thinking clearly? • How would you describe this experience? • How did you know what was happening? • How did you feel? Tell me about a time when you had difficulty with making decisions? • How would you describe this experience? • How did you know what was happening? • How did you feel? What has been the impact on your personal life (with family or friends)? What has been the impact on your job (professional commitments and responsibilities)? To what extent do you worry about these changes? How have you coped with these changes?

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introduce recent experiences. Questions and statements at the second interview included some of the following: Tell me about your journal entries. What difficulties have you experienced in cognitive abilities since we last spoke? When we last spoke you mentioned… Tell me more about that. Importantly, the journal served as a means for the subjects to express their reflections on the experience of cognitive change in different contexts throughout the 4 weeks between interviews. The audio-recorded interviews and journal entries were transcribed verbatim. Transcripts were verified prior to the second interview which included questions based on emerging themes. Because the analysis of data was concurrent with data collection, interview questions changed as the study progressed. Data management and analysis The transcripts were read and reread to allow repeated immersion in the data prior to beginning coding, classifying, or creating linkages [24]. The process of coding is done to uncover underlying meanings and is achieved by identifying recurring words, phrases, and themes within the data [25]. During this open-coding step, words were extracted verbatim and comment boxes added within the document so that the original text could be easily retrieved. Thematic analysis was then conducted using van Manen’s approach which includes uncovering thematic aspects, isolating thematic statements, and interpreting through conversation [22]. The emerging themes were written and rewritten until major themes and subthemes were identified. In addition, the second author and two additional university researchers with expertise in qualitative analysis reviewed interview transcripts and through group discussion provided assistance with the final thematic analysis. As a result, new insights were gained which led to several subthemes being collapsed and others being relabeled to capture the true essence of the experience of cognitive change following chemotherapy. The final steps included exploration of the lifeworld existentials as guides to phenomenological reflection [22]. van Manen describes lifeworld existentials as common themes present in all human experience—they include lived space, lived body, lived time, and lived human relation. Lived space refers to a felt space rather than a physical space. This can best be described by the way that certain space makes one feel. Lived body refers to one’s physical sense or being. One’s physical presence reveals certain aspects about them that are openly revealed but also includes that which may be consciously or unconsciously hidden. Lived time is the subjective sense of time that appears to either speed up or slow down depending on the nature of the experience. Lived time also refers to the effect of past experiences on one’s present situation and future plans. Finally, lived human relation refers to the relationships one has with others.

Results Qualitative sampling designs identify minimum sample size when the emergence of redundancy in data occurs [26]. In this study, data saturation was achieved with seven participants (a total of 14 interviews) as the essential themes were identified and redundancy occurred. Sample description Seven women with a diagnosis of breast cancer who had completed chemotherapy treatments within the past 12 months participated in this study. Each of these women self-reported cognitive changes during chemotherapy treatment that persisted for at least 1 month beyond final treatment and were present at the time of the study. Table 2 summarizes the participant demographics. Chemotherapy regimens included doxorubicin, cyclophosphamide, and docetaxel (two) and paclitaxel, carboplatin, and herceptin (five). In addition, three women received tamoxifen during the study.

Identification of themes Breast cancer is a complex disease that has varied treatment paths that are dependent upon specific tumor characteristics and disease stage. In addition to their unique treatment paths, each participant in this study had a unique personal story.

Table 2 Sample demographics

Sample (n=7) Age range Median age Race White Marital status Married Divorced Widowed Employment status Employed full time Homemaker Temporary disability Education High school diploma Baccalaureate degree Masters degree PhD or MD degree

42–59 52 7 4 2 1 5 1 1 1 3 2 1

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Analysis of the transcribed interviews revealed five essential themes: noticing the difference, experiencing cognitive changes, interacting socially, coping, and looking forward. In addition, subthemes were identified many of which are essential to the experience and two which are incidental but noteworthy in revealing the phenomenon. Noticing the difference For some, the first awareness of cognitive change began during the chemotherapy treatment phase, and for others, the awareness of changes did not occur until months after their last chemotherapy treatment. For those who experienced significant physical side effects during treatment, cognitive changes were not immediately evident. Once healing and physical side effects subsided and life routines returned to a relatively normal state of activity, the cognitive changes became more evident. For most, the awareness came with an event or several events in which the loss of memory or specific words were experienced suddenly and unexpectedly. Two subthemes were identified that were related to the noticing the difference essential theme. These included discovering that it is real and explaining to others. Discovering that it is real Six of the participants had not received specific information about cognitive changes following chemotherapy from their health-care providers. Several women described how cognitive changes following chemotherapy were not typically discussed and how the general public has little knowledge of the problem and so “… it catches you off guard.” The woman who did receive information from her health-care provider found the information was helpful when she first noticed cognitive difficulties. Explaining to others Five of the women described concern when cognitive changes surfaced while interacting with others. Some worried about what others might think of them, especially how it would influence their first impressions. “… you know you find somebody who’s fumbling over words, not sure what they’re trying to say and you know your first thought is: Wow, they’re not real clear.” Others handled these situations in a straightforward manner but worried about their abilities and the impact of these changes over time. “Sometimes I’ll say… part of my memory went with my hair…I don’t know if humbled is the right word but… I will tell people sometimes I am not 100 % reliable.” Experiencing cognitive changes Experiencing cognitive changes creates many day-to-day struggles. This major theme emerged with several subthemes that elucidate the specific cognitive changes along with their

consequences. They included the following: finding the words, problems with memory, paying attention, concentration difficulties, and organizing and prioritizing. Finding the words All of the women in this study revealed some level of difficulty with word retrieval. This includes not being able to find the words to explain something, not being able to remember names, or feeling like one’s mind is completely blank and the words cannot be found. Even though loss of words or remembering names is common among some middle-aged adults, women in this study described how “not finding the words” is different from anything they experienced prior to chemotherapy. “At work I sometimes I draw blanks…and it wasn’t just temporary blank… It was just not there. So I’d look it up or I would ask someone about it or I would just realize that I couldn’t recall it. It’s a total blank. I’ll see…a visual but have no words to put to it.” One woman revealed: “Whether it’s really just memory loss…I don’t know. I don’t feel that it’s just memories necessarily. It almost seems to me like it’s more of a retrieval, storage and retrieval problem.” Not finding the words was generally frustrating to most women in the study. Many women described the words being somewhere in the brain but unreachable. They spoke of not being able to “find it” or “bring it back out.” This difficulty also created feelings of anxiety and distress in common social interactions. In some cases, women felt inadequate and felt the need to apologize for this perceived shortcoming. Problems with memory Short-term memory was most problematic. Sometimes this involved difficulties remembering certain conversations or the details of a conversation; at other times, it consisted of difficulty in remembering steps in a familiar activity. For example, one woman stated: “I was trying to call a phone number that had texted me… and I could not remember the phone number. I would look at it and say it and then I would try and dial it and I couldn’t do it… There were too many 5’s and 8’s and it threw me off.” One woman analyzed that the conversations that she had greatest difficulty in remembering were those that “go back and forth before a decision is made.” The longer the discussion, the more difficulty she experienced. Concentration and paying attention difficulties Concentration difficulties and problems with paying attention were reported by all of the participants in this study. Although these behaviors are similar, there are subtle differences. Concentration is the ability to focus or sustain attention on one task, whereas directing attention requires the ability to focus on certain tasks in the presence of competing stimuli [27]. Difficulty concentrating and “controlling the flow of thoughts” was a common problem. In addition, all of the participants described difficulty concentrating when presented with too much detail. When

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conversations were lengthy and detailed, the women described them as both tiring and overwhelming. Several women described “background noise” or “mental noise” as types of distractions that made concentration more difficult. A consequence of difficulty concentrating, or sustaining attention, is that it often takes longer to complete tasks. When women found themselves lost in their thoughts, they paused to determine what had been done, what needs to be done, and sometimes they needed to start back at the beginning. The participants acknowledged that their ability to pay attention had changed. This involved recognition of fragmented thoughts, difficulty refocusing when interrupted, difficulty sitting still, and experiencing wondering thoughts moving from one topic to another. “I recently had a full day of leadership training… I could listen but I couldn’t be still. So I was always doing something… picking my fingers or doing this… I wasn’t disruptive. I could stop at times… I was always moving… I was really just antsy.” Although paying attention may already have been difficult for some, the women in this study indicated that it became more problematic in the posttreatment period as compared to the pretreatment period. One woman stated that it was similar to her son’s difficulty with attention deficit disorder: “Sometimes fidgeting is a way that I’ll pay attention, because (my) brain doesn’t jiggle as much. So sometimes… I will tap my foot in the air or I’ll rub my fingers or just do something that’s unobtrusive but just helps me focus on what’s going on.”

priorities and maybe I’m just not as quick… I still hit a wall. Suddenly you’re exhausted mentally.” Several women described difficulty sleeping and questioned the relationship of the fatigue they experienced to their lack of sleep and subsequently to their cognitive functioning. “The other thing that’s really been different since the fifth cycle is much more sleep disturbance… You go to bed and you can’t fall asleep and waking up at 4:00 in the morning and I think that plays a role… and I’m not sure exactly what causes that sleep disturbance… If I can get 6 to 8 hours sleep a night I would feel much better you know. But that’s been the big problem is the sleep disruption this time.”

Organizing and prioritizing Six of the women in this study were employed. For all of them, organizing and prioritizing activities, a component of executive functioning, was suddenly very challenging. Difficulty in completing household chores and projects was described by all of the participants. This difficulty existed from initiation of the activity to its completion. This was especially true when more than one task had to be done at the same time. “I don’t take on big projects at home anymore because I can’t… organize it in my mind. So I just… say I can’t do that and put it off and it just isn’t as easy anymore.” Most of the women in this study described difficulty in tracing their steps mentally in order to problem solve. This added an unexpected dimension to an already difficult situation. “Usually I could back track mentally and I could say oh okay it’s either here or there… But as it is, I have no clue. I cannot back track mentally. It is just absent in my mind… I’d have to really focus to remember… to do like a sequence of events. It seems like it goes away.”

Being a full participant Cognitive changes created challenges for many women in certain social situations. This was especially problematic for those whose ability to participate in social activities was important for their perceived well-being: “… Sometimes I get tired sooner with conversations and social outings. So I think that worries me just because I want to keep my friends and my relationships.” Being a full participant was especially difficult when there was a great deal of conversation to follow or when situations required participation in an activity.

Fatigue Fatigue has both physical and mental components that together contribute to the overall experience. In addition to the physical causes of fatigue from cancer treatments, the women in this study clearly identified a state of mental fatigue and mental exhaustion. “I am hoping it will get better. That’s the thing. Because I realize I get tired and that I’m changing

Interacting socially The significance of interacting socially differed for the women in this study. Some identified the need to maintain social contacts as very important to their perceived well-being, while others turned inward to find healing. Several women described how some social interactions were more challenging due to difficulties in managing the mental noise and “keeping up with the conversation.” Several described changes in their participation in certain social interactions due to changing priorities in their personal life. Four subthemes emerged that were related to the essential theme interacting socially, including being a full participant, turning inward, overcoming one’s fears, and changing priorities.

Turning inward Turning inward for some women was a way to find healing. For some, this meant being more introspective, and for others, it meant isolation. In terms of quiet and alone time, one woman stated: “I need more of it than I used to… I definitely to re-energize, I have to be alone. Before it wasn’t quite like that. At one point, even I thought I was an extrovert, but not anymore.” Avoiding social interactions was common for some. Certain topics of conversation seemed to require too much mental energy. For these women, turning inward provided the necessary energy to meet their daily challenges. For one woman, social interaction was not as important to her well-being at present. She described this as a relative change from how she viewed her personality prior to her breast cancer diagnosis and cognitive difficulties.

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Overcoming one’s fears Several women avoided placing themselves in some social situations because of fears of not being able to manage the complexity of planning and executing certain tasks. These social situations included having dinner with friends or participating in group activities. For these women, turning inward was not preferred but their prior experiences of cognitive difficulty left them feeling inadequate and lacking confidence. They wanted to participate socially but the fear of the perceived complexity of the situation was an obstacle. Successfully entering into the social interaction was viewed as a triumph in overcoming one’s fears. “My friend wanted me to go to the beach with her for four days and that was overwhelming. But I did it anyway… and it turned out to not be overwhelming. It was great… So that was good because I thought… I’m not going to be able to do it and I did.” Changing priorities Changing priorities while undergoing cancer treatment and in the months of healing that followed was apparent in many of the participants’ stories. Consequently, changing priorities made some social interactions seem trivial and unappealing; therefore, some opted out of participation. “I was invited to a party and after a couple of hours I was ready to go home… You know it’s hard to say exactly what it was… just lack of stamina or probably it was just the frivolous things people talk about. I just had trouble you know—I can only care about that for so long.” In contrast, at other times, the lack of desire to participate was related to lack of stamina and the inability to participate even when the desire to do so was strong. Coping Coping with cognitive changes consisted of confronting the challenges, finding support, and identifying strategies to cope. This new reality concerning struggles with common everyday activities created new challenges and stressors. Several of the women in this study recognized that cognitive difficulties were worse when they were stressed. The experience of physical side effects of treatment and complications from therapy presented additional challenges. The women’s optimistic responses to these physical challenges seemed to further encourage a positive attitude in their approach to dealing with their cognitive difficulties. There were two subthemes related to the essential theme of coping: finding support and strategies to compensate. Finding support Finding support did not come in all of the usual places. Only one of the participants attended a breast cancer support group. In fact, several described how participation for them in support groups was not a good fit. Both family and co-workers’ expectations of their capabilities seemed to be based on the fact that they physically looked

well. Although family and co-workers were generally supportive, for some, this created new stressors. One woman explained: “I want to feel alive again… I miss that whole you know and I don’t believe that people understand that toll that this has taken on me… I mean to really feel things that make you feel alive.” For another woman, confidence, control, and being highly effective in all that she did were important character traits. She explained, “I feel like I’ve lost a thread of my life… Like I’m having a hard time putting together tasks and that is the thing that really frustrates me.” One woman described deriving support from understanding the science behind her specific breast cancer diagnosis and treatments: “I find support in… learning about something instead of letting it overwhelm me… I could let what I don’t know cripple me.” Several women described how spirituality is comforting. One woman explained: “So God has a reason for everything… I guess it’s better to be happy and have a good attitude and no matter what happens you know God is in control of it, the plan is already made.” Strategies to compensate All of the study participants identified strategies to improve, prevent, manage, or eliminate the stressful situations brought on by their cognitive difficulties. Most identified the necessity and usefulness of writing lists and memory prompts. One participant described using Facebook as a comfortable way to socialize. She described that this type of communication was rewarding because “I don’t feel deficits when I write.” Another participant discussed exploring a cell phone application with prompts to help her remember appointments. As the women in this study became better at compensating for their cognitive deficits, they talked about how they could now conceal these difficulties from others. “No. I don’t think anybody has picked up on it yet because I guess I’m getting good at trying to cover up that I didn’t remember where I met you or why I met you or what we have in common.” Most women demonstrated a positive attitude about recovering from their current difficulties. They also expressed the belief that having a positive attitude was an important approach. “I’m feeling so much better… as time goes on. Yeah. So hopefully this memory thing will go away or I’ll just get used to it.” Looking forward Looking forward includes consideration of what the future may hold. Central to this theme is reflection on the total experience of cognitive change and the realization of the challenges still to come. Looking forward begins with the realization that cognitive change could be a long-term side effect. Looking forward consisted of the fear of sustaining symptoms or possible progressive symptoms and concerns about both current and projected employment challenges.

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Several wondered if a coping mechanism could become so automatic that one wouldn’t be able to discern if they had gotten better or if they were just better at compensating. There were two subthemes related to the essential theme of looking forward. They included fear of sustaining symptoms and employment concerns. Fear of sustaining symptoms Most participants questioned the possibility of having early signs of dementia or Alzheimer’s disease. This was particularly true of women who were over the age of 50. They began to wonder if the cognitive changes they were experiencing could be indicative of future cognitive difficulties. One woman explained: “I look back at my grandmother who had Alzheimer’s disease… she had it for years before we really truly knew what was going on… Having to go through and clear things out how many notes that she had written to herself to remember things. I sit there and I think, Holy cow! Am I headed that way?” For most, learning that cognitive changes were a possible side effect of their chemotherapy treatments relieved their concerns. Employment concerns Working outside of the home created additional stressors for the study participants. Six of the women were employed and all of them spoke about the challenges that they experienced related to employment. These women worked in occupations that required interaction with the public or in supervising others. One woman stated: “I would think What’s going to happen to my career? I need my job. Before when I wasn’t as sure I wasn’t going to forget things… I was much more anxious about it. But now I’ve reassured myself through months of looking over my notes and going back in kind of that OCD way and I’ll know okay you did it and you did a good job…” Women in this study were concerned about their job performance and the quality of their work. Although returning to work was initially distressing, most women were very astute in recognizing their limitations. One of these limitations is difficulty in learning new information. This was especially problematic when trying to learn a new process in the work environment. One woman described ways that she manages new information: “So going to conferences again I’m just taking notes and going back over my notes. Those are the areas that give me anxiety… am I going to be able to assimilate new information in the right way?” Returning to work or maintaining a normal work schedule brought additional stressors: “I actually started to not put so much makeup on and to not look like my normal self just to get people to stop expecting the normal me… When you go back [to work] just because the doctor said you could go back doesn’t mean you are recovered. It means you’re okay to work.” Two participants explained that they had definite plans to explore new career options. Specifically, they believed that their current jobs required too many structured, cognitive activities. One

woman explained: “I don’t feel the rewards cognitively… I just am not as capable or something in that way.” Analysis of lifeworld existentials Data analysis also included examination and interpretation of data as they relate to the lifeworld existentials. The guiding principle is that the lifeworld existentials are so closely interwoven into the human experience that the examination of one creates linkages to another [22]. The analysis of the data related to the lifeworld existentials follows and a summary is provided in Table 3. Lived space For most women, the first realization that they were experiencing some cognitive changes was startling. Whether the cognitive change included having difficulty remembering a word or a name, forgetting to do something important, or feeling a little fuzzy, they all described feeling caught off guard and unsettled. Suddenly, they didn’t feel that they were in a safe place. As one women stated, “I didn’t feel completely present.” Feeling lost in terms of mental processing was a powerful component of the experience. When trying to find the words, the participants questioned, where did it go? “In my head I have it all straight. I know what I want to say and then all of a sudden the word I want is gone. Completely gone.” Most had experiences of suddenly feeling lost in an activity and not being able to make the necessary mental connections to find their way back. “…I cannot back track mentally. It is just absent in my mind.” This aspect of the experience caused most to be alarmed at first and eventually led to some degree of frustration. The unpredictable nature of these difficulties made it difficult to engage in certain activities. These dreaded experiences became predictably unpredictable. The existential theme of lived space was present in two distinct ways when coping. First was the stage of confronting the feeling of being overwhelmed by activities that required mental processes. The second stage was being able to identify strategies for coping. For most of the women in this study, this was an unsettling experience that led them to a place of emotional vulnerability. Once the vulnerability was before them to view openly and honestly, they were able to discuss a path to coping. As they progressed on the journey to recovery, lived space became a warmer and safer space. At this juncture, it was not possible to isolate cognitive change following chemotherapy from the larger picture of surviving breast cancer. The conversations about cognitive changes took a circular path of returning to the diagnosis and the impact of breast cancer on their being. Lived body Lived body refers to the physical sense of an experience and the physical way that the body responds to the subconscious parts of an experience [22]. Several

Experiencing cognitive changes

Interacting socially

Coping

Feeling alarmed and startled. “Catches you off guard.” A world that already placed one in a fragile position now became more insecure.

“I could not, could not, could not, Friendships are important to overall well- Cancer experience in general find the words.” being. led to emotional Feeling lost in space. For some, quiet and introspection are vulnerability. Where was I? welcomed because there was “…just Once recognized, one could Organization and prioritization are too much going on. Too much cancer identify coping strategies. difficult. going on.” Spirituality assists in the journey to healing physically and emotionally. Initial focus is on the physical side “I just felt like I had an out-ofPotential isolation: The challenges Physical appearance improves effects and survival. body experience. It was really brought on by trying to manage the before physical and mental Suddenly one notices the hard for me to process things in mental noise and in following stamina improves. difference. that present moment.” conversations could be remedied by Looking well before feeling You are not thinking clearly. You Too much detail is difficult to simply limiting the number of social well causes tension at cannot mentally process certain process. interactions. home and at work. information, and become Physical and mental fatigue. “It’s too much work. I need to save my exasperated when trying to Decision-making is difficult. mental energy for more practical remember a name or certain tasks.” details. Time is suddenly suspended. You It takes longer to complete tasks Shifting priorities to focus on one’s health More time spent in planning. and other personal needs. In employment settings, they ask: and to solve simple problems. Remembering steps in a process is Reflection on the months since diagnosis develop strategies to What just happened here? difficult. “I was very and treatment. compensate for lack of total What did I come here for? disoriented… I would just have Speaking confidently about what is clarity and manage work Will this get better? to stop and then re-orient…I needed to be well. flow and organization of Am I getting worse? couldn’t do two things at one tasks. Should I be doing something to time.” Tasks take more time to make this better? complete. Explaining and apologizing to Difficulty paying attention. Social interactions can bring a sense of Family and co-worker others. Forgetting names and details of safety and belonging. At other times, relationships are valuable, Conversations are difficult to conversations are viewed as they are mentally draining. but focusing on oneself and follow. personal shortcomings. Some bring triumph over one’s fears. one’s needs comes above Concern about first impressions. others. Embarrassment about professional Widowed, divorced and interactions. single women identify that their journey is more challenging because they are “alone.”

Noticing the difference

Essential themes

Time in a broader sense includes how the present can influence one’s future plans. “…I just don’t want to do anything like I’ve done…” “I don’t feel the rewards cognitively…I’m just not as capable…So I want to be more touching and seeing.” Achieving balance and redefining self are priorities. Relationships with health-care professionals are important in getting through the next phase of recovery.

Fear of Alzheimer’s. Fear of not being able to learn new things whether work-related or recreational activities. Considering the pursuit of new careers and a different set of cognitive skills.

Hope for full recovery and managing the fear of recurrence. “I hope I go back to normal… and being afraid of cancer is not always on my mind anymore…”

Looking forward

This table displays examples of each of the lifeworld existentials (lived space, lived body, lived time, and lived other) in relation to each of the study’s five essential themes. Reference: “Existential themes” by van Manen [22]

Lived other Human relationships

Lived time Subjective sense

Lived body Physical sense

Lived space Felt space

Lifeworld existentials

Table 3 Lifeworld existential theme analysis

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participants described a sense of disconnect between their body and mind. Many described knowing what they wanted to say but not being able to articulate their thoughts. One woman described having an out-of-body feeling: “I just had like an out of body feeling. It was really hard for me to process things in that present moment.” Lived body is woven into dealing with physical healing and fighting for survival. Coping with the physical side effects of disease and treatment preceded any ability to think about the cognitive domains. All of the study participants experienced some physical side effects and some of those were chronic changes for which they had to adapt. Stress was identified as a factor for increasing one’s awareness of cognitive difficulty. “…just recognizing that when… I need to remember something or something is being stressful, or anytime there’s a lot of activity or stress… it seems to be worse.” In addition, lived body includes those behaviors that may change in response to others. This was exhibited by some who described concealing their cognitive difficulties by planning ahead and developing strategies to integrate into their work flow or social interactions. “No, I don’t think anybody has picked up on it yet because I guess I’m getting good at trying to cover up.” Lived time Lived time refers to the subjective sense of time. In the experience of noticing the difference, lived time, stood still. Time was suddenly suspended. This was apparent in women’s descriptions of asking: What just happened here? What did I come here to do? The perception of time shifted for some who began to question: Am I getting worse? Will this get better over time? Should I be doing something to make this better? In other situations, it was time that revealed the cognitive change. When active treatment was near completion, the presence of cognitive change surfaced and was recognizable. As they were feeling better physically, there was often the question of whether they would remain in this state. The participants in this study were able to approach this question directly. Although they did not dwell on it, they all recognized the possibility that these changes might be permanent and that they might need strategies to adapt to these changes over time. Lived time slows down as one looks forward and reevaluates priorities and options. In addition, lived time in a broader sense includes how the present can influence our future plans. This component of lived time is seen in the participants’ plans to cope with anticipated employment concerns not only for tomorrow but also in the upcoming weeks, months, and years. Lived human relationships When women first noticed the difference in cognitive abilities, they were alarmed. When they had to explain to others, they were embarrassed. Discussing this with others meant first admitting to self and then to others that they were having cognitive difficulties. It

was especially difficult to explain to a stranger. One woman thought it easier to let someone think they were “just not too wise” than to attempt to explain. They were concerned about the first impression that one might develop. For all the women, it was embarrassing to some degree. In addition, the relationship that existed between the woman and the other person was critical to the type of interaction that followed. They could be open with friends and family and feel safe in explaining their difficulty. Interactions in professional relationships created a greater sense of uncertainty and stress as they acknowledged not remembering something and attempted to move on. Even though they were able to get through the immediate struggles, the women in this study viewed these difficulties as personal shortcomings and nearly always felt the need to apologize. These situations helped them to anticipate future difficulties and prepare steps to prevent problems in the future. This was especially true in employment situations where several women developed processes in their work flow that would keep them on track. Sometimes social interactions brought a sense of safety and belonging. This was evident in wanting to maintain the support of friendships. At other times, these social interactions were draining of one’s mental energy. This was best seen in the descriptions of managing the mental noise by sometimes being alone. Lastly, sometimes these social interactions helped women to triumph over their fears. Focusing on oneself and one’s needs above others was a commonly described behavior.

Discussion Noticing the difference The participants in this study first noticed the difference in cognitive abilities in similar ways. These specific cognitive difficulties have been documented by other researchers. The literature demonstrates that the most frequently reported findings include evidence of changes in memory, concentration, and executive functioning [2, 11]. Researchers in one study concluded that women could pinpoint the exact time in their treatment trajectory when cognitive changes became evident [16]. This study revealed that the problem of cognitive change is not often discussed by health-care providers and is not routinely assessed for in either the treatment or posttreatment phases. This finding is supported by other researchers [16, 20, 21, 28]. Those who received information during treatment did not place much emphasis on it at the time but found the information helpful when they began to notice symptoms. Once they understood that their cognitive difficulties were

J Cancer Surviv

very likely related to their chemotherapy treatment, the women in this study reported feeling a sense of relief. Several participants in this study never mentioned their cognitive symptoms to their physicians or nurses. Other researchers have also reported that women did not want to bother the physician with continual complaints even though they experienced distress over thinking that nothing could be done to improve their symptoms [29]. Experiencing cognitive changes The findings of this study add clarity concerning the experience of memory deficits. The women in this study (ages 44 to 42) perceived their memory problems as new and different from any earlier experience. In addition, word retrieval was a commonly described problem. This difficulty ranged from not being able to find the words to explain something, not being able to remember names, or feeling like one’s mind is completely blank and the words cannot be found. The descriptions of difficulty with word retrieval are supported by other qualitative research [21]. In the current study, participants’ descriptions of “finding the words” or “remembering the steps in a familiar activity” shed important light on the unique characteristics of the lived experience. Consequently, these difficulties were very discouraging to women and led to additional stress. The capacity to direct attention has been observed and reported in other studies [17]. Cimprich describes directing attention behaviors as social functioning behaviors that require attentive listening, exercising patience, or delaying when responses are appropriate [30, 31]. This was evident in the current study through women’s descriptions of difficulty paying attention and following conversations in certain social interactions. For the participants in this study, difficulty in paying attention involved recognition of fragmented thoughts, difficulty refocusing when interrupted, struggling to sit still, and wandering thoughts. These findings are consistent with the findings of other investigators who reported individuals appearing to be disoriented, inattentive, and having difficulty learning new tasks [32, 33]. One woman compared her difficulties in paying attention to the problem of attention deficit disorder. This finding is congruent with reports by other researchers who described similarities between the capacity to direct attention in individuals with chemotherapy-related cognitive changes and the clinical features of adult attention deficit disorder [13, 19]. The capacity to direct attention is necessary for cognitive performance such as learning new information, planning, and making decisions. Von Ah and colleagues [17] reported that deficits in capacity to direct attention were related to poorer quality of life, including more depressive disorders, poorer well-being, poorer physical functioning, and greater fatigue. Although the participants in the current study reported

difficulty in learning new information, and in planning and making decisions, they did not express signs of physical or psychological distress. However, they all experienced fatigue and questioned its influence on their experience of cognitive difficulties. Some described it as mental fatigue that increased to a point in which the body needed to mentally shut down. This finding is congruent with reports from other studies that cite fatigue as a possible contributing factor to cognitive impairment following chemotherapy [5, 14]. It is still unknown how the degree of fatigue relates to the subsequent degree of cognitive impairment [8]. Several women in this study described difficulty sleeping and questioned the relationship of insomnia and lack of sleep to their cognitive difficulties. Sleeplessness is a frequently reported side effect of chemotherapy [15]. It has been reported that sleep-wake disturbances experienced by cancer patients may be related to the physiological changes associated with the cancer process [34]. In addition, insomnia has been studied as a component of symptom clusters in adult cancer patients [35]. The findings of a study of a psychoneurologic symptom cluster (depressed mood, cognitive disturbance, fatigue, insomnia, and pain) reported associations between cognitive disturbance with depressed mood, as well as fatigue with insomnia [36]. In addition, it is recognized that differentiating sleeplessness from fatigue is difficult [15]. Meanwhile, improvement in cognitive functioning has been reported with the use of cognitive behavioral therapy [37]. More studies are needed to understand the relationships among these psychoneurologic symptoms and to test interventions for specific subgroups of patients [38]. Although the current study does not adequately inform this issue, it does provide important detail that can frame research questions for future inquiry.

Interacting socially This study’s findings demonstrate that social situations are a challenge for some cancer survivors related to their capacity to concentrate on the content of certain conversations. This claim has been substantiated by others [16]. In addition, researchers have found that some breast cancer survivors who reported cognitive changes also reported changes in social relationships and possible withdrawal from social functions [18]. Some participants explained that participation in certain social interactions had changed because of adjustments in their personal priorities. In addition, anticipated cognitive difficulties in certain social situations coupled with fatigue and the overall impact of the cancer experience impacted women’s interest in participating socially. Similar concepts are documented in the literature in relation to cancer survivorship in general [15, 39]. However, research that specifically addresses this finding in relationship to cognitive change could not be found.

J Cancer Surviv

Coping Confronting the feeling of being overwhelmed by activities that required mental processes was an unsettling experience for most of the women in this study. For some, this led to a sense of emotional vulnerability. Cognitive changes following chemotherapy were predictably unpredictable for the women in this study. This perceived lack of control was unsettling for some. Other investigators found that psychological distress improved over time as perception of control improved with the strongest predictor being the rate of change in symptoms [40]. The question of whether cognitive change leads to perceived loss of control has not yet been studied quantitatively and the limited number of qualitative studies published have yet to reveal a clear understanding of this phenomenon. Most of the women spoke of a spiritual path to assist them in the journey to healing physically and emotionally. This finding is supported by other research which revealed that women who viewed God as highly engaged in their life situation experienced significantly greater increase in psychological well-being, decreased psychological distress, and decreased concern about disease recurrence [41]. The study participants identified strategies to improve, prevent, manage, or eliminate the stressful situations brought on by their cognitive difficulties. Most identified the necessity and usefulness of writing lists and memory prompts. They described the importance of maintaining detailed calendars and obtaining adequate sleep. Similar examples of specific coping strategies have been described by other researchers [16, 20, 21]. The current study revealed two novel interventions for easing the problems of cognitive deficits. Although these activities are common in today’s society, they were not previously described in the literature. These included the use of Facebook as a tool for communication and the exploration of phone apps that could provide prompts and reminders. One participant described using Facebook as a “comfortable way to socialize.” She described this type of communication as rewarding because “I don’t feel deficits when I write.” Another participant discussed exploring a cell phone application with prompts to help her remember appointments and schedules. Looking forward Looking forward to what the future may hold begins with the realization that cognitive change could be a long-term side effect. Some continued employment through and beyond the treatment phase. The women in this study reported concerns about their job performance and the quality of their work. They described strategies to assure that their work was complete and thorough but identified difficulty in doing so. Others have reported that cognitive change following chemotherapy can affect job performance related to varying levels of

memory loss, decreased efficiency and speed, and increased stress [20]. In the current study, the women who were employed reported greater fatigue and perceived greater overall stress in relation to their cognitive difficulties. In another study of breast cancer survivors, stress and fatigue were more closely related to work output than cognitive limitations [42]. Although the relationships between cognitive changes, stress, and fatigue require further investigation, the current study offers new insights into understanding how adaptation to cognitive changes in the employment setting is achieved. Two women in the current study reported considering the exploration of new career options in the future. Specifically, they believed that their current jobs required too many structured, cognitive activities. Other researchers have reported that the change in employment to less demanding work was required due to the experience of treatment-related cognitive impairment [20]. In contrast, the participants in this study were motivated to consider new careers due to changes in personal satisfaction. One participant in the current study did need to terminate her employment due to current inability to fulfill the job functions and was able to qualify for temporary disability from her former employment. Other reported findings also support the notion that cognitive difficulties may lead to work absences and declines in productivity, job performance, and personal economic concerns [15, 16, 20].

Strengths and limitations of the research study Rigor in the phenomenological methods employed added strength to this study. Descriptive methods improve our understanding of certain constructs that can help to refine current practice. In contrast, interpretive approaches may guide practice or lead to recommendations for new practice strategies [43]. The interpretive phenomenological approach used in this study enabled entering into the subjects’ world to reveal deeper meaning behind the descriptions. Lastly, the analytical processes and credibility of the findings were enhanced by a transparent audit trail. Conducting two interviews with each subject was very effective in achieving deeper and richer descriptions. Unlike other phenomena, cognitive change was not a past problem; rather, it was a continuing and evolving experience. Therefore, the time between interviews, along with journaling, enabled the participants to reflect on their experiences and to interpret those experiences. The second interview became a hermeneutic conversation between the subject and the first author that included describing and interpreting the phenomenon. A limitation of this study is the homogeneity of the sample related to culture and socioeconomic background. The participants in this phenomenological study were recruited from

J Cancer Surviv

two locations in central Pennsylvania. All were Caucasian American and six had some post-secondary education. Three of the women held advanced degrees. In addition, the sample did not include any women from the ages of 21 to 40. An important area for future inquiry would be to explore how younger women experience and cope with cognitive changes following chemotherapy.

Implications for cancer survivors It is important for health-care providers to understand that cognitive change following chemotherapy is experienced by some individuals who receive chemotherapy. Knowledge of the common symptoms of cognitive change is critical in order to provide patient and family counseling and education. As revealed in this study, when patients are not aware of this possible side effect, the symptoms can catch them off guard and lead to significant anxiety and fear. Implementation of standardized assessments and consistent methods of teaching individuals about cognitive changes following chemotherapy are needed. There are several critical times in the treatment phase when assessment and education are important. At the first treatment session, many individuals would benefit from receiving written materials about chemotherapy side effects. Although the physical side effects of chemotherapy are most likely to occur in the immediate posttreatment phase, patients should be made aware of possible changes in memory and concentration. As evidenced in this study, awareness of cognitive changes can occur at varying times following chemotherapy; therefore, posttreatment visits present important opportunities for ongoing assessment and education of side effect management. Routine screening and consultation with occupational therapists may prove to be a valuable intervention for cancer survivors who have received chemotherapy [44]. Further research related to employment challenges among cancer survivors who experience cognitive changes following chemotherapy is warranted. Studies are needed to better understand the relationship between cognitive change, job performance, and stress. In addition, studies that identify predictors of job performance difficulties in individuals with cognitive changes may facilitate appropriate supportive action such as application for temporary employment disability compensation.

Conclusions Cognitive change is a significant side effect of chemotherapy reported in a subset of patients. The findings of this study provide clarity related to how cognitive changes are experienced, the impact of these changes on social interactions, how

women cope with these changes in relation to everyday activities, and the struggles and stressors encountered as women strive to adapt to employment demands. The detailed descriptions provided by the women in this study give voice to their experience. Furthermore, the experiences described provide testimony to the importance of assessment and screening for cognitive changes as a standard part of posttreatment followup care. It is through this deeper understanding of the experience that the development of sensitive assessment tools and tailored interventions may be further explored. The interpretive phenomenological method employed in this study provides a unique analysis of the lived experience of cognitive change following chemotherapy. The analysis of essential themes against the lifeworld existentials served as a means for reflection providing a richer and deeper understanding of the phenomenon in practical terms. As this study progressed, it became evident that the experience of cognitive change following chemotherapy cannot be understood as an isolated phenomenon. Rather, it is best understood in the context of the total cancer experience. As survival increases with new cancer therapies, oncology health-care providers need to become more knowledgeable about the potential for cognitive changes in some individuals following chemotherapy. Acknowledgments The authors gratefully acknowledge Judith E. Hupcey, EdD and Lisa Kitko, PhD for their assistance in data analysis and thematic identification, Margaret Cushman, PhD for her expertise in the subject area, and Elizabeth Tisdell, EdD for her qualitative research expertise. This research was partially supported by a clinical research award from the Nursing Foundation of Pennsylvania. Conflict of interest Mary Louise Kanaskie and Susan J. Loeb declare that they have no conflict of interest. Ethics statement All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients being included in the study.

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