Elisabeth Counselman-Carpenter, PhD, LCSW, Associate Professor, Adelphi University
Joyce T. Williams, Founder & CEO of Keepers of the Flame
Author Note
Joyce Williams is a breast cancer survivor whose passion is helping others who are going through what she experienced.
Abstract
Objective: This mixed methods study, which took place during the COVID-19 pandemic, explored the lived emotional experience and therapy preferences of women diagnosed with breast cancer.
Methods: As part of a mixed methods study of 69 women who have or currently live with breast cancer, twenty-seven participants opted into a Phase II semi-structured interview to further discuss their experiences of emotional coping during the treatment process, beliefs about therapy and groupwork during treatment and the impact of COVID-19 on their emotional experience during cancer treatment. Thematic narrative analysis was used to analyze their interviews and to identify common themes related to groupwork among participants.
Results: Participants shared about their experiences with how various modalities of groupwork positively impacted their experience while coping with breast cancer and shared recommendations for groupwork offerings and group content for breast cancer patients.
Conclusions: Group work with women undergoing breast cancer treatment can provide a multitude of resources and benefits, including improved emotional support, decreased isolation, dissemination of important medical information, and the teaching of coping strategies. Ensuring that there are multiple sources for group support including psychoeducation, mutual aid and clinical groups, flexible scheduling and diverse content offerings will continue to improve the overall holistic care and support provided to those in breast cancer treatment.
Keywords: breast cancer, groupwork, COVID-19, pandemic emotional support, psycho-oncology support
Introduction
Being diagnosed with and fighting breast cancer is a time of great emotional vulnerability. Those fighting breast cancer have been found to have increased rates of depression and anxiety, and that both those in treatment for breast cancer and their family members experience negative psychological challenges (Carlson, Waller, & Mitchell, 2012; Celik, Tuna, Samancioglu, & Korkmaz, 2016; Mitchell et al., 2011, Spiegel & Riva, 2014). In the year following the diagnosis of breast cancer, women report nearly twice the rate of depression, anxiety, or both as compared to the general population (NICE, 2009). However, research on psychosocial emotional support and referrals to individual and group therapy for breast cancer patients remains limited, particularly for women in non-Western countries (Celik et al., 2016; Hung et al., 2022).
Group therapy has been found to reduce isolation, improve social communication, allow for the exchange of information and resources, and help those in treatment learn how to cope with the physical and emotional side effects of the treatment process (Nakamura & Kawase, 2021; Yalom & Vinogradov, 1989). While Burlingame and Jensen (2017) have found that group therapy for breast cancer patients has a moderate impact, they also stated that it can improve a variety of outcomes. Forms of group therapy effective with breast cancer patients that have been found to be effective include group-based Acceptance and Commitment Therapy (ACT) for patients currently receiving chemotherapy (Han et al., 2019) and group psychoeducation (GPE) (Onyedibe & Ifegwazi, 2021). At a time when there is a shortage of services and clinicians, group therapy has been found to benefit behavioral health providers by saving both labor and time (Han et al., 2019).
However, there can be multiple challenges specific to developing and running groups with breast cancer patients: the significant demands on time for breast cancer patients as they juggle multiple medical appointments, cope with devastating side effects from treatment and fulfill multiple roles as caregivers and employees. Many patients have trouble committing to regular group time due to competing treatment demands. This has become particularly complicated during the pandemic for group members that may be concerned about health, well-being, and being in-person with others during a time while they are immunocompromised and who experience increased barriers to accessing groups due to lockdown and other pandemic limitations.
This mixed methods study, which took place during the COVID-19 pandemic, explored the lived emotional experience and therapy preferences of women diagnosed with breast cancer. Most participants had participated in some form of groupwork prior to the pandemic, which included in-person clinical therapy groups, in-person psychoeducation groups and peer-based support groups, both in-person and digitally based, typically held through social media platforms. Nearly all participants reported losing access to in-person groups due to the lockdown and ongoing pandemic.
Method
Sampling
This study used three sampling methods: availability, snowball, and purposive. Through availability and snowball sampling, participants were recruited in the following ways: in person at a hospital-based breast cancer treatment center through posted flyers and posts on approved social media pages related to breast cancer support throughout the country, which included three breast cancer support groups, three cancer foundations, and one digital support group. Participants indicated they received treatment at diverse f hospitals , including ‘state-of-the-art’ hospitals, teaching and research hospitals, community-based hospitals, and rural hospitals. Respondents who shared their geographic location indicated both national and international residence including Georgia, California, New York, Connecticut, Massachusetts, Tennessee, the Midwest, and the country of Jordan. Purposive sampling was used to include women who had undergone or were undergoing breast cancer treatment and to exclude women who had been identified as having the BRCA gene, and had undergone prophylactic preventative surgery but had not experienced treatment protocols such as radiation, chemotherapy, and medication maintenance. Participants had had to be at least 21 years old to be included in the study. Sixty-nine women participated in the study.
Participants
Table 1 displays the descriptive characteristics of the participants. About 90 % of the participants (n=61) were between 30 and 59 years old at the time of the interview. Nearly 9 out of 10 participants (n=61) were White or Caucasian and about 80% of the participants (n=54) were married or lived with partners. Over half of the participants (n=35) earned more than $90,000 per year at the time of treatment. About 1 out of 3 participants (n=26) had attended therapy prior to breast cancer diagnosis and approximately 30% of the participants (n=20) were in psychotherapy treatment at the time of the interview.
Insert Table 1. Demographic information.
Data Collection and Instruments
In the quantitative phase, a questionnaire gathered demographic information, participants’ history with therapy, and beliefs about physician-driven referrals to psychotherapy treatment, including referrals to multiple types of groups. All participants were informed of anonymity procedures, data protection, and the scope of the study. Participants were provided with a written copy of informed consent. This study was approved by [blinded for peer review] University Institutional Review Board [reference number #461]. All data were encoded in a password-protected electronic database .
Mixed Methods and Qualitative Analysis
All 69 breast cancer patients who participated in the survey were offered the opportunity to participate in a semi-structured interview. Twenty-seven of the participants opted to be interviewed. Each interview was transcribed verbatim by hand, and participants were invited to review their transcripts prior to coding. All transcription was completed by the researchers to allow for complete immersion in the data and for the opportunity to engage in memoing while coding (Padgett, 2008). Thematic narrative analysis (TNA), a strategy of narrative inquiry, provided the analytic framework for this phase. In TNA, the emphasis is “on the ‘told’ – the events and cognitions to which language refers during which “a biographical account emerges from the ‘self of the narrator rather than in conversation between a teller and particular listener” (Reissman, 2008, p. 58). A cross-case analysis was utilized to look for common themes. To maintain auditability, notes were carefully documented in a clear and logical manner so that others could follow the analytic steps throughout the study’s process.
Findings
Sixty-nine breast cancer patients participated in Phase One which was a survey asking about their treatments, coping strategies, emotions, opinions on psychotherapy, and views on physician-driven referrals to therapy. Each participant was invited to take part in a semi-structured interview (Phase Two), and 27 participants opted-in for that portion of the study. Phase Two participants elaborated on the emotions experienced during treatment, the need for mental health support services particularly related to all forms of group work including clinical group therapy, mutual aid support groups and psychoeducation groups, challenges finding emotional support and made suggestions for multiple modalities group support, including in-person and digital opportunities. Overall, when asked the question “what was the best kind of support given”,’ 74% (n=20) referenced some type of group work in their answer.
Need for Group Support
Though 100 %(n=27) of our Phase Two participants said that patients should be referred to therapy, the majority indicated further challenges that arose with their ability to gain access to all forms of therapeutic support, including issues with group availability and lack of ability to attend in-person groups during the pandemic. Forty-one % (n=11) expressed concerns arising from the pandemic and 11 % reported general therapist availability and scheduling were a barrier, especially post-lockdown . An additional 11 % of our Phase Two participants indicated that cost was a barrier for therapy; and the majority of participants divulged that they, as the patient, were their own barrier, with 74 % (n=20) saying that they were on ‘overload’ and 85 % (n=23) expressing their inability to pick up the phone and make arrangements on their own due to feeling overwhelmed. Compounding isolation, feeling like ‘the only one’ going through emotions, and loss of friends during the breast cancer treatment process were identified by one third of participants, suggesting the need for group-based support.
Suggested Types of Groups
With the growing demand for mental health providers and psychotherapeutic interventions coupled with availability and accessibility challenges, flexibility by providing multiple modalities to group opportunities was discussed by our participants as ways to mitigate these issues. Participants were very clear in naming the types of groups that they felt would be supportive during the breast cancer treatment process.
For in-person support groups, participants suggested the following: non-clinical peer-led support groups, groups that included peer-matching for outside-of-group support, and clinical group therapy. Participants also mentioned the benefit of attending psychoeducational group classes both in person and virtually. Other recommendations for virtual or digitally based groups included the option for dedicated virtual ‘hangouts’, such as those found in non-clinical social media settings as well as scheduled Zoom and/or GoogleMeets. Other virtually-based recommendations included the option of attending live webinars and pre-recorded digital curriculums to attend asynchronously.
Suggested Group Content
Clinical group therapy can provide patients with coping strategies, processing opportunities, and multiple opportunities for interpersonal connection and healing. A number of participants shared that they benefited from learning coping strategies from their psychoeducational clinically based support groups while others commented on how general breast cancer educational information delivered in a group format helped them feel more empowered, in control and learned information that was helpful in navigating the treatment process.
Identified Challenges and Barriers to Attending Groups
Participants also shared numerous challenges and barriers to attending groups including scheduling challenges, fear of exposure to COVID-19, and exposure to secondary and vicarious trauma.
Scheduling.
Overwhelmingly, participants talked about the challenges of attending groups run at set days and times. Clinical group therapy, support groups, webinars, and Zoom/Google Meet groups all have scheduling restrictions and availability concerns, often resulting in patient non-committal tendencies or behaviors of signing up and not attending. Seventy-four % of all Phase Two participants indicated that due to their lack of time and feelings of being ‘overwhelmed’ as contributing to a non-committal feeling related to attending group sessions. However, 25 of the 26 participants felt they would have been more accountable for attending all forms of group work if they had had support and assistance in making appointments for group-oriented services.
Participants shared other techniques that would help them improve group attendance, including physician/nurse navigator follow-up as a form of accountability and off-hours groups offered in the middle of the night. Others shared that asynchronous groups and curriculums would be more helpful due to time restrictions. One participant shared “…here I am, almost 2 years into it, and I’m having all of this stuff…I actually started watching [YouTube] Resilience videos…And that has been super helpful because this childcare thing is really, really hard. So, having that online option, that’s been valuable to me right now. And, that’s something I can access right now.”
Fears related to the emotional aspects of group work.
Participants shared that one barrier to group work is the ‘Debbie Downer’ fear (fear that a group will pull one’s mental health down while trying to process other patients’ traumas in addition to their own) was noted as a concern in both non-clinical peer-led support groups and social media groups. Participants noted the anxiety and fear that accompanied hearing other patients’ traumas. One shared, “At one of the meetings, one of the women was like, “I had it and now it’s come back,” and that’s scary. That’s frightening.” Another participant added, “Every time I hear a woman who’s had it and she gets re-diagnosed … it terrifies me.” Another participant noted that in her network of social media survivors, people “…weren’t fully accepting and understanding of other people’s decisions. And it wasn’t just me…I just didn’t feel accepted and safe because I saw the way that other survivors were being reacted to”.
COVID-19 and Fear of Exposure.
In-person groups and particularly in-person group therapy was reported to trigger the fear of exposure to COVID-19 and other illnesses as breast cancer patients are considered to be immunocompromised. Overall, COVID-19 had a significant impact on this study’s participants as 33 % of Phase Two participants (n=9) referenced limited access to emotional support due to the pandemic. Digital group platforms and non-clinical in-person groups can provide more protection against fear of exposure and one-third of participants (n=9) held beliefs of benefit to virtual groups directly as a result of the pandemic.
Suggestions for group content.
Participants shared multiple themes related to group content that could be helpful in coping with the experience of living with breast cancer including normalizing intense emotions, a place to process fear and anxiety, learning to live with PTSD, and processing grief. Seventy-eight percent of Phase Two participants reported a high desire to normalize intense emotions experienced through the treatment process. Eighty-four percent of Phase One and all Phase Two participants reported experiencing intense fear, 46 % of Phase One participants and 85% of Phase Two participants reported depression, and anxiety was expressed by 80 % of Phase One and 96 % of Phase Two participants. PTSD was also noted by 48%of Phase One and 44 % of Phase Two participants.
Grief and loss were another heavily reported theme, experienced by 68 % (n=47) of Phase One participants and 85 % (n=23) of Phase Two participants. Group content should include the understanding of grief and how it accompanies loss as well as ways to address and work towards acceptance of those losses. Discussing the loss of control, loss of health, loss of sense of self and loss of safety is also a significant aspect to this grief work. Nearly half (n=31) of Phase One participants and 70 % (n=19) of Phase Two participants shared that they felt the loss of control; and 89 % (n=24) of Phase Two participants said they had lost their sense of safety in the world. One shared, “once you get diagnosed, I don’t know if you can go back to just breathing normally. You’re constantly on edge, constantly afraid, and constantly…like…the world’s not even. It’s like you’re constantly walking this tightrope”. Another participant shared:
I used to think…I used to picture myself 70, my mother’s age, no problem…and now I can’t. Not without a caveat like, “well, I hope I make it.” And that’s just a horrible way to view my future…I think about my mortality all the time…I took it for granted. I thought I was going to be a grandma, and now I’m like…I hope….”.
Other concrete topics suggested for group content, outside of individual emotional experiences, included how to handle insensitive people, which was reported as an issue by nearly 40 % of Phase Two participants. These comments included “well, you’ll get a free boob job” or “my friend had cancer….she died from it and feeling pressured to be the ‘perfect’ breast cancer patient. How to improve interpersonal communication skills, such as discussing treatments with medical professionals and how to discuss emotions with friends and family were also suggested as topics for discussion. Two participants were also clear in stating that religious and faith/prayer-based groups should be kept separate from referrals to group therapy or psychoeducation groups.
Implications
The majority of participants in this study reported the importance of group work in their lived experience during breast cancer treatment. This study is unique in highlighting the perspectives of breast cancer patients in their own words and share their experiences related to different types of group work, content of group work and how they are offered. These findings suggest that while breast cancer patients self-identify as benefiting from groups, but also need nuanced attention to group scheduling, types of groups offered and tailored content. Particular attention should be paid to the potential for vicarious trauma and secondary stress that can come from participating in an oncology support group, and group facilitators should be mindful of the bias that comes with presenting as the ‘perfect’ breast cancer warrior. For psychoeducation groups, content should focus on interpersonal and communication skills, for therapy groups, processing of emotions, and groups specific to grief and loss are recommended.
Limitations
There are multiple limitations to this study which includes a small sample size, and a respondent pool that was primarily white, affluent, and younger than the general population of breast cancer patients. As the researchers were mindful of both the pandemic and the time limits of patients currently in cancer treatment, we chose not to be restrictive of criteria for those who opted into the interview phase. This study was exploratory in nature and thus, the findings may not be generalizable to patients who received breast cancer treatment during COVID-19.
Conclusion
Group work with women undergoing breast cancer treatment can provide a multitude of resources and benefits, including improved emotional support, decreased isolation, dissemination of important medical information, and the teaching of coping strategies. Future research comparing the impact and support of in-person groups versus digitally or virtually based groups is warranted, particularly as the COVID-19 pandemic, and a triple-demic of RSV, influenza, and COVID continues to threaten those who are immunocompromised. Ensuring that there are multiple sources for group support including psychoeducation, mutual aid and clinical groups, flexible scheduling and diverse content offerings will continue to improve the overall holistic care and support provided to those in breast cancer treatment. Finally, the voices of those fighting breast cancer need to continue to be heard in order to provide inclusive and affirmative services in order to both survive and thrive.
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