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Experiences With a Cognitive Rehabilitation Program for Five Female Breast Cancer Survivors: A Focus Group Study

2019; Volume: 2; Issue: 4 Linguagem: Inglês

10.3928/24761222-20190625-03

2476-1230

Theresa M. Smith, Karen Ratcliff, Rachel Perry,

Family Support in Illness

Original Research freeExperiences With a Cognitive Rehabilitation Program for Five Female Breast Cancer Survivors: A Focus Group Study Theresa M. Smith, PhD, OTR, CLVT, , , PhD, OTR, CLVT Karen Ratcliff, PhD, OTR, , and , PhD, OTR Rachel A. Perry, MOT, , MOT Theresa M. Smith, PhD, OTR, CLVT , Karen Ratcliff, PhD, OTR , and Rachel A. Perry, MOT Published Online:June 25, 2019https://doi.org/10.3928/24761222-20190625-03Cited by:1PDFAbstract ToolsAdd to favoritesDownload CitationsTrack Citations ShareShare onFacebookTwitterLinkedInRedditEmail SectionsMoreAbstractIntroduction:Cancer survivors frequently live with cognitive impairment. Cognitive rehabilitation can improve cognition, but few studies have addressed survivors' apparent needs or experience with cognitive rehabilitation. The goal of this study was to explore the perceived needs of breast cancer survivors after diagnosis and their experiences with a cognitive rehabilitation program.Methods:This qualitative study used thematic analysis to examine qualitative data collected in a focus group held after completion of a cognitive rehabilitation program. The program included sessions on memory, organization, problem solving, attention, and compensatory strategies, followed by 1 month of computer cognitive exercises.Results:The study included five female participants, ranging in age from 58 to 71 years (M = 65.2, SD = 4.26). Five themes as well as subthemes emerged from the data: diagnosis of breast cancer, the journey, support, effects of treatment, and experience with the cognitive rehabilitation group.Conclusion:Survivors did not view their recovery journey as complete and expressed ongoing needs. Their experience with the program was positive, and they incorporated strategies that they learned into their lives. Breast cancer survivors have an ongoing need to process the life-changing effects of cancer, suggesting a role for occupational therapy. Further research is needed on cancer survivorship and best practice for cognitive rehabilitation. [Annals of International Occupational Therapy. 2019; 2(4):152–159.]IntroductionThe National Cancer Institute (n.d.) estimated that 1,735,350 individuals were diagnosed with cancer in the United States in 2018; in women, approximately 30% of newly diagnosed cases are breast cancer (BreastCancer.org, 2019). As cancer treatment becomes increasingly efficient and effective, more survivors are living with cognitive impairments. Cognitive impairments attributed to cancer treatments include deficits in memory, attention, processing speed, and executive function (Von Ah, Jansen, & Allen, 2014). Executive function includes activities such as planning, problem solving, self-monitoring, and self-awareness (Diller & Weinberg, 1993). Cognitive impairment after cancer treatment is underdiagnosed and results in reduced quality of life and decreased function in everyday activities for cancer survivors and can lead to decreased occupational participation (Bail & Meneses, 2016; Baxter, Smith, & Wahowki, 2014; Chan, McCarthy, Devenish, Sullivan, & Chan, 2015). Because of the level of cognition required, instrumental activities of daily living are most affected (Hegel et al., 2011). Nonpharmacological cognitive interventions used in rehabilitation have been shown to increase participation in everyday activities (Willis et al., 2006) and improve quality of life (Ferguson et al., 2007). Two primary outcomes of occupational therapy are increased participation and improved quality of life (American Occupational Therapy Association, 2014).Various methods have been used to deliver cognitive rehabilitation to breast cancer survivors in both group (Ercoli et al., 2015) and individual formats (Von Ah et al., 2014) as well as through web-based programs (Bray et al., 2017; Von Ah et al., 2012). These interventions target the specific cognitive skills of memory, attention, problem solving, and processing speed and most often rely on cognitive behavioral management (Ferguson et al., 2007) and psychosocial interventions (Hines, Ramis, Pike, & Chang, 2014). Notably, cognitive rehabilitation is not initiated until after a functional deficit has been identified (Pergolotti, Deal, Lavery, Reeve, & Muss, 2015).Despite an increase in the number of research studies on the effectiveness of cognitive rehabilitation for breast cancer survivors, no program has been proven most effective and no standard of care has been established. Further, few studies have explored cognitive needs at different stages of survivorship or survivors' experience with participation in a cognitive rehabilitation program. The purpose of this qualitative study was to explore, through a focus group, the perceived needs of breast cancer survivors after cancer diagnosis and their experiences with a cognitive rehabilitation program. The investigators identified two research questions: What are the perceived needs of breast cancer survivors after diagnosis? What are the experiences of breast cancer survivors with a cognitive rehabilitation program? This information can help to inform care as well as planning of future cognitive rehabilitation programs.MethodsResearch DesignThis qualitative study used thematic analysis to examine qualitative data collected in a focus group. The aim of a focus group is to understand through dialogue the perspectives of a group of people on a specific issue (Liamputtong, 2009). Focus groups can be used to examine research questions from participants' perspectives (Liamputtong, 2011) and are useful in exploring topics where knowledge is limited (Stewart, Shamdasani, & Rock, 2009). A focus group was held after completion of a cognitive rehabilitation program for cancer survivors (CRPCS). The CRPCS was conceived of by two occupational therapists, and sessions were designed and conducted with the assistance of five master's-level occupational therapy students. The program consisted of five 2-hour group sessions on memory, organization, problem solving, attention, and compensatory strategies, followed by 1 month of in-home computer cognitive exercises with HappyNeuron Pro software (HAPPYneuron, n.d.). Group sessions were modeled on the seven-step group protocol described by Cole (2018). These steps were: (a) introduction of the purpose of the session; (b) engagement in the activity; (c) sharing of each participant's completed activity; (d) processing of how the participants felt about engagement in the activity; (e) generalizing or summarizing participants' responses to the activity; (f) application of the principles learned in the activity; and (g) summary of the purpose of the session, the content of the activity, and the process of the participants. The purpose of the focus group was twofold: (a) to determine the needs of breast cancer survivors and (b) to elicit recommendations for improvements to the CRPCS.ParticipantsParticipants were recruited through a county breast cancer support group and through referrals from two county surgical oncologists. The first two researchers visited a breast cancer support group and described the purpose of the study, handed out recruitment flyers, and collected contact information for attendees who were interested in participating. On their clinic days, the surgical oncologists distributed recruitment flyers to patients. Potential participants were contacted when arrangements for the setting and time of the group session were confirmed.Inclusion criteria for participants included male and female breast cancer survivors who were 18 to 100 years of age and were literate in English. Exclusion criteria consisted of any major mental disorder, a central nervous system disorder, Alzheimer's disease, dementia, developmental delay, traumatic brain injury, or cerebrovascular accident. Prisoners and pregnant woman also were excluded from the study.Research ProceduresThe study was approved by the institutional review board of the researchers' affiliated university at that time. Before data collection was undertaken, informed consent, approved through the institutional review board, was obtained. The participants received compensation for their time. The focus group and all group sessions of the CRPCS were held in the same room of a community college. All researchers were involved in the development and implementation of the CRPCS.InstrumentThe focus group interview, written by the first two researchers, was designed to answer the two research study questions. The open-ended questions and probes (Table 1) were worded to elicit participants' perceived needs after cancer diagnosis, their experience with the CRPCS, and their recommendations to improve the CRPCS.Table 1 Focus Group Questions for the Cognitive Rehabilitation Program for Cancer SurvivorsWhat do you think are the greatest needs of people after breast cancer treatment? Probes: What are some needs that should be addressed right away? What are some needs that might be better addressed later?What has been your experience of being in this study? Probes: What would you have liked more of? Less of? Are there other issues you would like to have addressed? What do you think about the length of the program? What do you think about the time of day of the program?As you know, we will be having another group of breast cancer survivors next year. What recommendations do you have for us to improve our program? Probes: How about the assessments? How about how we started each session? What changes would you suggest for the weekly sessions? How could your journal writing experience be improved? How about the home application of what was learned in each session? What was your experience of using your tablet for cognitive training?Data CollectionThe first researcher served as group facilitator and asked the interview questions, used all probes, solicited responses from participants, and encouraged discussion among the participants (Curtis & Redmond, 2007). The focus group proceedings were recorded on a cell phone, and the second researcher entered field notes directly into a table she had constructed that consisted of blocks for each question and probe. At one point during the interview, the second researcher probed for a more detailed answer so that she could fill in a block of the table. The third researcher transcribed the recordings within 1 week of the focus group.Data AnalysisThe first and second researchers have had personal experiences with cancer. The first author is a breast cancer survivor, and during the study, the second researcher's mother was treated for lymphoma. These researchers engaged in reflexivity to prevent their experiences from affecting their interpretations of the participants' comments.Data from the focus group were examined with thematic analysis (Clarke & Braun, 2013). The first researcher read the transcript from the focus group for accuracy and began, by hand, line-by-line open coding to identify initial codes and categories. The first researcher then loaded the interview into Atlasti and reread it for further open coding. These different levels of coding allowed the researcher to achieve familiarity with the data, an essential part of thematic analysis (Clarke & Braun, 2013). The Atlasti software enabled the researcher to maintain links to codes and categories for all supportive quotes. The second researcher then reviewed the codes and categories. Both investigators reached an agreement on collapsing or combining of codes or categories before they began axial coding to identify relationships between the initial codes. To enhance the trustworthiness of the coding process, the researchers performed constant comparison within the transcript. The two researchers then proceeded with selective coding of data associated with core themes. All researchers agreed on the final themes and subthemes.ResultsThe study included five participants who were recruited by two of the researchers from two different breast cancer survivor support groups. All of the participants were female and ranged in age from 58 to 71 years (M = 65.2, SD = 4.26). All met the inclusion criteria and agreed to participate in the study. Three participants were African American and two were White. See Table 2 for additional demographic information.Table 2 Participant DemographicsParticipant numberAge, yearsRace158African American271White364African American466African American567WhiteFive themes and their subthemes emerged from the data. The themes included the diagnosis of breast cancer, the journey, support, effects of treatment, and experience with the cognitive rehabilitation group. See Table A (available in the online version of the article) for themes, subthemes, and prototypical quotations.Table A Themes and Subthemes with Prototypical QuotationsThemes and SubthemesPrototypical QuotationsDiagnosis of breast cancerFear"And fear. I was afraid" "living through it was very frightening." (P4)Surprise"I had plans and things I have to do now with my life." (P1) "I was always healthy, I was never sick, there has never been breast cancer in my family. And so I was kinda surprised when I was diagnosed." (P2) "I was like when they diagnosed me with it I was like I never get sick, never been in the hospital except to have my two kids." (P4)Faith questioned"Questioning if I've been a good Christian why is this happening to me. Cause I had always been this person, this good Christian." (P3) "Wow, why me Lord?" (P4)JourneyTreatment phase"I felt like I had to be strong for my family, so I really didn't express myself as fully as I probably could have." (P3) "All I asked is I do want the mastectomy, I did not want the reconstructions" (P1) "They said do chemo, so I said let's do chemo, how do I do it, where do I do it," (P1) "I didn't want to know anything about it. Just do what you have to do and let's get it done. Let's just do it." (P2)Faith"But I didn't really even tell anybody. And I just did what I had to do. Went through it and that was it." (P2) "That's my faith and that's how I got through with it." (P1) "I think that's all of us…through faith." (P2) "So my thing with breast cancer was real hard for me, it was hard…and difficult. But I stayed sick a lot and I cried a lot, but I just kept the faith." (P4)Transition stage"So the journey doesn't end right after your last radiation treatment. It picks up after that. And um, then you've got to get over that, you know the bone, the pain that's in your bone, the neuropathy." (P5) "The doctor did not release me to go back to work and I still have some anger about that." (P3) "Even though it lasts beyond the surgery, the chemo, the radiation. Then there's the journey afterwards. You know, there's that anti-estrogen that you take." (P5) "I thought surely after chemo I'll come back with nice hair and actually I wanted them to do … a mastectomy but they said I didn't have to worry about it and I said, "No, I'll have nice boobs, nice hair, I'll be ready to go." (laughing) And my surgeon he just laughed at me. He said, "No, I don't think it's going to work like that." (P2) "I had to hurry up and go right back to work…I realized physically I couldn't do that anymore. Mentally, I started getting scared, because I put down medicine and I couldn't find it. I had to write down everything I did with each patient so I could go chart it because I couldn't remember." (P1) "Now, I was this cancer patient. Where do I go from here? What can I do? Was it my age? Is it my diabetes, brain fog, depression, anger? It meant finding out who this new person, what do they call it?" (P3) "I think you're so run down and tired that it's hard to, it's harder to come back. But at the same time, you just keep doing it, keep doing the things that you've always done, which I never stopped doing many of them." (P2) "But activity, getting back into some routine helps a whole lot." (P3) "I had to look at other things, working with the church, doing some volunteer work, looking into who I was and what did this mean for me." (P3)Acceptance of new normal"The new normal. That was hard for me cause I had been very rigid and constrained. And this was a whole other world." (P3) "So I've had to learn to be content with some things, but also being good at different things." (P3) "You don't have to be the best, you can be something out there and still love yourself." (P3) "Learning to accept who I am now which means letting go of some of those preconceived images and ideas. And it's a positive that new person can be loved, can be successful, can be a traveler, can be a gamer." "I had to finally look at chemo like…I thought it was my enemy but finally I had to realize it was my friend because that's what saved my life, chemo" (P5) "But I had to reinvent myself, cause I'm doing something totally different" (P1)SupportSupport group"I would have to go along with support [group] too" "it was beneficial, you know, hearing everyone else's stories." (P5) "I know they talked about it at one of the support group." (P1)Peers"So I think it would be nice if they, when you go in and you're diagnosed if they had somebody And I've offered myself up for that afterwards. Cause you may need to talk to somebody that's gone through the same thing that I went through, let me walk you through so they can know what to expect." (P1) "You have the doctors, you have the nurses, you have your family, but I didn't have anybody in the beginning who had gone through any of it, you know." (P4)Family, friends, co-workers"It helped that I had a friend who was a psychologist and looking back I would encourage anyone that maybe you need that objectivity person" (P3) "I didn't have anyone to really talk to, but my family and friends. And the difference with me was that, I didn't feel alone." (P4) "Support is very important for after and giving yourself permission to be that vulnerable person." (P3) "The support that I got from the people I worked with, my children, and the staff that I went through chemo and all that with was very supportive cause they helped me get through." (P1) "That person that if I feel like crying I can go and cry." (P3) "…my nurse…ook very, very good care of me. She was there, she was by my side, every time she came on my shift, I would smile." (P4) "I worked with a lot of medical professionals who gave me a lot of good advice." (P5)Treatment effectsEarly effects"The radiation wasn't bad for me it didn't seems like until they gave me that boost at the end." (P5) "The cancer went fine when I was taking chemo, but when the doctor gave me the wrong medication and it burned me from the top of my head to the bottom of my feet, I was as black as the street out there." (P4) "It just turned really brown here, like a sun…not really a sunburn and they give you these creams to put on. Just like a little tan and that faded over time." (P5) "But I did get shingles from that time. That's the only time I've ever had shingles in my life was when I was going through radiation." (P5) "Mine [Shingles] went down my back and around and up my torso." (P2) "It takes a lot out of you." (P2) "I had no appetite, I had no tastebuds, I was without all of that for a long time. Not for months, about a year. Not for a long time." (P5) "Yeah I didn't have any appetite, but it came back. It came back." (P2) "Cause you know, you don't have any eyelashes, you're bald. You know, so I went through all of that, I think we all do." (P5)Ongoing effects"Is it my diabetes, brain fog, depression, anger?" (P3) "It was life changing that journey. It was definitely life changing. You go through more than just a physical/medical experience. You go through mental, emotional, spiritual. "And I'm still suffering." (P5) "It just sucked all the estrogen out of my body and as a result I had medical problems. You know, "Nothing major, but you know there's the libido, there's the hair thinning, there's all kinds of things." (P5) "It's kind of the same thing with the lack of estrogen, the wrinkles, the thinning hair."(P2) "I still don't have hair on my lower leg" "I never have to shave my legs anymore. That's a plus." (P5) "I have one toenail on my right foot that's still black." (P3) "I have a neuropathy, but it's not the bad part… It just feels like I have shoes and socks on tight all the time." (P1) "One of the problems that I find is that I cannot look at a word and …know what it is. And I can't spell. Just a number of different things that I used to do all the time." (P2)Self-image problems"It may not be in the big picture, but when it's me that no longer have breasts and have to look at myself each morning, it's a big thing for me" (P3) "I got some scars…" (P2) "I just blew up, blew up. I was this little at first and then I just blew up.It really puts the weight on you." (P5) "Self-image is a big thing. You're continuously having to work on it" (P1)Experience of cognitive rehab groupLearned strategies"I purchased a journal and I made my list in a journal, I write how I felt that day, when I exercised, what I was eating, how I was feeling, just kind of keep of track of everything, moving locations of family members of friends. And I keep it all together. And of course on the bottom line I put "slow down." (P2) "Doing the deep breathing and things." (P2) "Always in a hurry. Do the thing, do it quickly, and move on to the next things. So with the study what I have found, I've always been a list-maker, so I make lists, you know, what to do the next day." (P2) "Yes, I learned patience." (P4) "It was a learning episode for me, and it made me more aware in my everyday living, okay, so this is what they was trying to do with that session." (P3) "I still use that one [hand technique]. And I think that one will probably stick with me. But I liked the one with the pros and cons. It's like I knew about it, but this was a reminder to use it more. So I think it was a positive learning experience for me." (P3) "I use the breathing for the pain in my back…and the fingers for things [hand technique]. It works great when going into a room and think what am I here for."(P2) "I'm glad to start really focusing a lot more." (P5)Empowerment"I learned so much more about myself. I don't pay attention. I'm always in a hurry. I have a whole list right here. Don't focus, distracted, interruptions..." (P5) "The whole think kind of made me more aware of my listening skills." (P3) "But it showed me, I can actually play games! …now I can call myself a gamer. That was something I never even considered that I would actually do or say." (P3) "Hey, we're the pioneers. We paved the way." (P3)Recommendations"It was excellent. I don't think I need no improvements. I think it was a great job." (P3) "Maybe some exercises on learning how to slow down." (P3) "It's really hard to break that routine, you know of bad things, bad habits. And to relearn. So maybe something more like relearning." (P5) "Relaxation techniques. Yeah stress reduction. Calming music." (P5)Diagnosis of Breast CancerOn receiving a diagnosis of breast cancer, the participants experienced fear and surprise and a questioning of their personal faith. Several noted that they considered themselves healthy and did not have a family history of breast cancer. Some participants felt that somehow their diagnosis was the result of a punishment and were challenged at a spiritual level.The JourneyThe journey for participants began after they received their breast cancer diagnosis. Although the experience was different for each survivor, the individual journeys included many similar phases. These phases included the subthemes of the treatment phase, faith, the transition phase, and finally, acceptance of the new normal. Participants described the difficulty of staying strong for their families and avoiding burdening their loved ones while personally struggling with the prescribed treatment. Some reported that they felt lonely and vulnerable during this time. Participants reported accepting the opinions of medical professionals yet doubting that the medical professionals knew the long-term effects of the treatment. Participants also reported a shift in thinking from considering the treatment the enemy to considering the treatment the means to survival.Survivors reported having difficulty with the treatment phase and described the importance of faith. They were adamant that their journey continued into a transition phase that began well after treatment. An acceptance of their new normal was imperative. These difficult experiences resulted in a shift for the participants, physically, mentally, emotionally, and spiritually.After treatment ended, survivors reported multiple changes that required adjustments to their new health status. One participant never returned to work; another who did was unable to perform at her previous level and took a less physically and mentally demanding position. For some participants, accepting their new selves meant letting go of preconceived ideas about themselves and giving up some of their dreams for the future. Reinventing themselves included doing things differently, trying new approaches, and being content with themselves.SupportSupport emerged as another theme. Participants reported that they received support from a variety of sources, including support groups, peers, health care workers, family, friends, and co-workers. Even with this support, however, they still had unmet needs. Participants expressed a desire for further support, particularly from other survivors who had experienced a similar journey.Effects of TreatmentParticipants required no encouragement to discuss the effects of treatment. These involved early effects, ongoing effects, and resulting problems with self-image. Early effects included hair loss, decreased appetite, loss of taste, pain, fatigue, shingles, and burned skin. Ongoing effects included neuropathy, decreased body hair or thinning head hair, weight gain, wrinkles, difficulty remembering words, and symptoms such as loss of libido because of lack of estrogen. Participants attributed problems with self-image to the effects of surgery, particularly mastectomy, lack of estrogen, weight gain, and thinning hair.Experience With the Cognitive Rehabilitation GroupThe theme of experience with the CRPCS included subthemes of learned strategies, empowerment, and recommendations. Participants reported using strategies that they learned in CRCPS sessions in their daily lives. Specific strategies included memory tools, organizational techniques, and problem-solving approaches in addition to allowing themselves to slow down, being patient with themselves, and increasing focus and awareness. They reported that they felt empowered. They expressed changes in their thinking, such as increased awareness of themselves and their lives. Their recommendations for future cognitive rehabilitation programs included sessions on how to learn new skills, slow down, and manage stress.DiscussionThis study explored the perceived needs of breast cancer survivors after their cancer diagnosis as well as their experiences with a cognitive rehabilitation program. The participants reported that their needs began at the initial diagnosis of breast cancer and continued through the journey that their life-challenging cancer diagnosis set in motion. The survivors emphasized the importance of support at different points of the journey. Needs that resulted from the effects of treatment transformed from immediate effects to needs that continue today. They reported a positive experience with the CRCPS. They learned strategies during the sessions and used them in their daily lives. They reported a sense of empowerment that may have resulted from successful negotiation of the challenges that the CRPCS presented. Their recommendations for changes or additions to the CRPCS centered mainly on managing stress and learning new skills. These suggested additions to the program can help breast cancer survivors to better self-manage their care.The themes and subthemes that emerged from the data shared similarities and differences with the results of other studies of breast cancer survivors. The fear and surprise reported by the participants at the time of their cancer diagnosis aligned with the experiences of other survivors. Williams and Jeanetta (2014) reported that their participants experienced fear and shock on diagnosis, and Ashing-Giwa et al. (2004) reported that some participants expressed disillusionment that their healthful lifestyle did not prevent the diagnosis.Similarities also were found in the literature regarding the parts of the journey that our participants discussed. Ashing-Giwa et al. (2004) stated that some participants did not want to burden their families. Like our participants, some of their study participants lost jobs or were unable to resume their previous level of employment. Ashing-Giwa et al. (2004) reported that their participants felt a lack of energy and had difficulty focusing on work, and six participants in their study lost their jobs. Religion and/or spiritual beliefs and practices have been found to play a major role in survivors' journeys (Adams et al., 2017; Ashing-Giwa et al., 2004). Ashing-Giwa et al. (2004) found that women of color primarily relied on religion-based spirituality, whereas many White women used various other spiritual practices. The "new normal" reported by participants in this study was described differently in other studies. For example, Salder-Gerhardt, Reynolds, Britton, and Kruse (2010) reported that participants remarked that they now had new possibilities. Williams and Jeanetta (2014) stated that their participants had a better understanding of their capabilities.Other studies have emphasized the importance of support when coping with breast cancer (Adams et al., 2017; Ashing-Giwa et al., 2004; Williams & Jeanetta, 2014). However, there is disagreement as