European Journal of Oncology Nursing 19 (2015) 433e440

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European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon

Breast and ovarian cancer survivors' experience of participating in a cognitive-existential group intervention addressing fear of cancer recurrence Christine Maheu a, b, *, Sophie Lebel c, Christina Tomei c, Mina Singh d, Mary Jane Esplen e, f a

Ingram School of Nursing, McGill University, Montreal, Quebec, Canada ELLICSR: Cancer Survivorship Program, Princess Margaret Hospital, University Health Network, Toronto, Ontario, Canada School of Psychology, University of Ottawa, Ottawa, Ontario, Canada d School of Nursing, York University, Toronto, Ontario, Canada e University Health Network, Toronto, Ontario, Canada f Department of Psychiatry, University of Toronto, Toronto, Ontario, Canada b c

a b s t r a c t Keywords: Group intervention Fear of cancer recurrence Breast and ovarian cancer Cognitive-existential approach Participation satisfaction Qualitative study

Purpose: Currently, very few clinical approaches are offered to cancer survivors dealing with fear of cancer recurrence (FCR). This paper provides an overview of cancer survivors' experience and satisfaction after taking part in a six-week, cognitive-existential (CE) group intervention that aimed to address FCR. Method: In this qualitative descriptive study, 12 women with breast or ovarian cancer provided in-depth interviews of their experience in taking part in the CE group intervention. Results: Analysis of their accounts revealed struggles to face their fears. Yet, by embracing their group experience, the women learned how to confront their fears and gain emotional control. The women reported that the group work was highly valuable. Conclusion: From the women's analysed accounts, the authors have proposed recommendations for changes to the group work process before moving the study to a full clinical trial. The study's findings also provide valuable insights to other cancer survivor groups who may also be experiencing FCR. © 2014 Elsevier Ltd. All rights reserved.

Introduction Fear of cancer recurrence (FCR) has been described as the sword of Damocles that hangs over patients' heads for the rest of their lives (Vickberg, 2003). Common themes that emerge include fear of death, further treatment, emotional distress, pain, suffering of and leaving behind loved ones, and loss of breast (Johnson Vickberg, 2001). The literature suggests that a little more than half of all cancer survivors will experience some form of moderate to high levels of FCR (Llewellyn and et al., 2008; van den Beuken-van Everdingen and et al, 2008). Unlike other forms of psychological distress, this form of distress does not dissipate over time (Lebel and et al., 2007).

* Corresponding author. Ingram School of Nursing, Wilson Hall, Room 401A, McGill University, 3506 University Street, Montreal, Quebec, H3A 2A7, Canada. Tel.: þ1 514 616 5954; fax: þ1 514 398 8455. E-mail address: [email protected] (C. Maheu). http://dx.doi.org/10.1016/j.ejon.2014.12.003 1462-3889/© 2014 Elsevier Ltd. All rights reserved.

Moderate to high levels of FCR can lead to psychological consequences, including anxious preoccupation and excessive checking (Lee-Jones and et al., 1997). Despite the prevalence of FCR, past studies are mostly descriptive with few psychosocial intervention studies to address FCR. A recent pilot intervention study reported findings from a group of women with breast or ovarian cancer who took part in a six-week cognitive-existential (CE) group intervention directly targeting FCR as the main outcome of change (Lebel and et al., 2014). One of the aims of the pilot study was to demonstrate participant acceptance and perceived benefits of a new intervention (Leon et al., 2011). This paper reports on findings obtained from interviews with 12 of the 44 women with breast or ovarian cancer who took part in the six-week CE group intervention from the pilot intervention study. The aim of conducting end-of-intervention interviews was to document the women's overall experience and satisfaction with their participation in the FCR group intervention, and to further inform the initial study intervention for refinement before moving to a full trial.

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Counselling approaches to fear of cancer recurrence Of the 191,300 news cases of cancer estimated in Canada in 2014, 26% will be women with breast cancer and 2.9% with ovarian cancer (CCS, 2014). In 2014, it is estimated that 24,400 women will be diagnosed with breast cancer and 2700 with ovarian cancer across Canada (CCS, 2014). The relative survival rate past five years postdiagnosis for ovarian cancer is 35% and 88% for breast cancer. This means that approximately 21,472 women will survive breast cancer, and individuals living with cancer are increasing at a rate of 2.4% per year (CCS, 2014). Cancer survivors have a unique subset of needs. While there is a variety of issues that might concern a cancer survivor, such as residual treatment impacts or altered body image, cancer survivors rank fear of cancer recurrence as one of their predominant psychosocial concerns (Hodgkinson and et al., 2007; Urbaniec and et al., 2011). Fear of cancer recurrence (FCR) has been defined as the “fear or worry that the cancer will return or progress in the same organ or in another part of the body” (Vickberg, 2003). FCR is common among cancer survivors, with reported ranges of prevalence from 22% to 99% (Crist and Grunfeld, 2012), and can be a profound and persistent difficulty affecting quality of life (Simard and et al., 2013). Despite such prevalence, to date there has been little attention in how to clinically address this fear. Other than a recently published pilot study on FCR (Lebel and et al., 2014), there has been only one published study of group intervention addressing fear of disease progression among a mixed population of individuals with cancer or chronic arthritis (Herschbach and et al., 2010). This study found that both a cognitive-behavioural group intervention and a supportive-expressive group approach (serving as the control condition and expected to be less effective in reducing FCR) succeeded in decreasing fear of disease progression among group participants. However, the study findings are limited by their sample selection being focused on inpatients and on those with recurrence or metastases. Additionally, external validity of the findings is limited, as the control group was recruited after both intervention groups were completed. In general, cognitive-behavioural groups have been shown to be beneficial in cancer populations (Thewes and et al., 2013). For example, among women with breast cancer, cognitive behavioural therapy (CBT) is known to reduce psychological distress and improve coping (Sheldon and Barnett, 2012; Simard et al., 2010). Similar to CBT but with an existential component, CE therapy has also been used effectively to reduce psychological distress and enhance cognitive attitudes in women with breast cancer (Kissane and et al., 2003). In the authors' pilot study (Lebel and et al., 2014), a CE approach was used combining principles of CBT (e.g., cognitive reframing and relaxation techniques) and existential therapy principles (e.g., redefining life priorities, confronting fears). This combination is particularly relevant to FCR, where patients experience existential fears, such as the fear of premature death. Group work exercise in the pilot study aimed to address anxiety about cancer recurrence, living with continued heightened uncertainty, possible symptoms of cancer recurrence, misbeliefs about the benefits of worry, fear of further treatment, fear of death, and the de-catastrophizing of perceived worst-case scenarios. In the group, the women were also invited to set goals, with a particular emphasis on the making of future plans. Cognitive existential therapy further emphasizes education, cognitive reappraisal, and enhanced coping in conjunction with existentially oriented strategies (Kissane and et al., 2003). Group interventions specifically tend to focus on fear of treatment, fear of death, freedom of choice, personal responsibility and priority, developing future plans, and authentic living (Kissane and et al., 2003). In addition, relaxation exercises are often included, such as progressive muscular relaxation, guided imagery, mindfulness, body scanning, calming self-talk phrases, and grounding exercises.

The addition of a qualitative study to the initial pilot intervention study provides more in-depth descriptions of the experiences of the women who participated in the group sessions. For example, from the recently published findings from the pilot study on the FCR group intervention (Lebel and et al., 2014), we found that the intervention succeeded in decreasing FCR, cancer-specific distress, and uncertainty surrounding cancer. The group work also improved participants' quality of life and increased their use of two coping strategies: acceptance and positive coping. Yet, further participants' insight and feedback was needed to further document and understand what part of the clinical intervention experience was viewed as relevant and helpful at reducing FCR. Such an approach of obtaining findings from qualitative and quantitative studies enhances knowledge translation success. Methods In order to provide a comprehensive understanding of the experiences and thoughts of women about their participation in the CE group intervention, a qualitative descriptive design was used (Magilvy and Thomas, 2009; Sandelowski, 2000) incorporating semi-structured in-depth interviews. The study's aim was to produce thick descriptions and interpretations of the meanings participants made of their participation in a CE group intervention. Ethics approval for the study was obtained from the Research Ethics Boards of each of the investigators' primary affiliated institutions and from the recruiting agency. The cognitive existential group intervention In the pilot CE group intervention study (Lebel and et al., 2014), a total of 44 women received the intervention for a total of 9 groups of 5e8 women with either breast (7 groups) or ovarian cancer (2 groups). The group intervention ran for 90 min, once a week, for 6 weeks. Potential participants met with a psychosocial professional prior to the start of each new group to review group work expectations, such as the exchange of feelings on FCR. Each group exclusively comprised of either breast or ovarian cancer patients. Each group was led by two trained psychotherapists (i.e. psychologists, social workers, or nurses). All authors listed except for C.T. and M.J.E. led some of the intervention groups). Table 1 outlines the content of the six sessions. In each session, participants were given exercises to complete during the session as well as at home. Each session began with a review of previously assigned homework. The group leaders were instructed to process difficult feelings participants shared and encouraged each participant to share their experience with FCR. The manualised group intervention was adapted from a previous model of a group CE therapy developed by Kissane et al. (Kissane and et al., 2003) for women with breast cancer. Our intervention was also guided by the Leventhal's Common Sense Model (Lee-Jones and et al., 1997) and Mishel's Uncertainty in Illness Theory (Mishel, 1988). Our group approach included teaching coping strategies such as cognitive reframing and relaxation (Gil and et al., 2006; Mishel and et al., 2005) to manage the accompanying distress associated with FCR. A visit by a nurse specialist in either breast or ovarian cancer also provided an educational 45-min presentation on the possible signs and symptoms of cancer recurrence; this visit occurred in session 2. Recruitment and sampling The methods and study sample are reported in further detail in the published pilot intervention study (Lebel and et al., 2014). In this qualitative study, women were recruited from January 2010 to

C. Maheu et al. / European Journal of Oncology Nursing 19 (2015) 433e440 Table 1 Content of the six group intervention sessions. Session# Session description 1

2

3

4

5

6

- Each participant introduces herself, with a focus on her experience of FCR - Introduce an FCR theoretical model - Identify internal and external triggers - Introduce notion of cognitive restructuring and triggers - Coping skills teaching: Progressive muscular relaxation - 30-min visit from a nurse to provide information about signs of recurrence and follow-up care - Discuss ways of regaining sense of control - Coping skills teaching: Calming self-talk phrases and use of relaxation CD - Explore reasonable levels of worry - Challenge faulty beliefs about benefits of worry - Review maladaptive coping strategies like reassurance-seeking and avoidance - Coping skills teaching: Guided imagery - Provide psycho-education about worry and the need for exposure to underlying fears - Promote emotional expression and confront specific fears that underlie each participant's FCR - Write down worst case fear scenario - Coping skill teaching: Mindfulness exercises - Review exposure to worst case scenario - Discuss ways of coping with some of the feared outcomes - Encourage expression of feelings of demoralization - Encourage participants to become re-engaged with important life goals, people, or activities they may have given up - Discuss what the future and planning now means for each participant - Review all content covered to date - Discuss future goals - Set new priorities - Promote the expression of saying goodbye to the group and provide closure

July 2013 from two participating sites: the Cancer Survivorship Program at Princess Margaret Cancer Centre in Toronto, Ontario, and the Division of Gynecologic Oncology at The Ottawa Hospital in Ottawa, Ontario. The women were selected from a total pool of 44 women who took part in the 6-week CE group intervention. Among the 44 women who completed the study intervention, 35 had breast cancer and nine had ovarian cancer. Women recruited for the pilot intervention study had elevated levels of FCR as assessed by a valid FCR measure (Northouse, 1995) and had elevated levels of cancer-specific distress as measured by a valid distress scale (Horowitz et al., 1979). In order to select participants from the pilot intervention study to take part in the end-of-intervention interviews, the principal investigators, C. M. and S. L., were asked specifically to identify talkative and less talkative women, indicate women who openly expressed the fact that they had good experiences in the group, and identify those who seemed to have less favourable experiences. Eight women with breast cancer and four women with ovarian cancer were identified and approached to participate by C.M. and C.T. All of the women accepted invitation to participate in the interviews. Recruitment and interviews continued until there was saturation of themes in relation to women's accounts of the categories and sub-categories of group work experience identified through concurrent analysis of the interviews. All interviews were conducted by telephone, audio recorded and transcribed to facilitate data analysis. The average age of participants was 54 years (range: 36e71), and most were Caucasian, university educated, married, and working for pay. Two-thirds of the participants had stage I or stage II cancer and had been diagnosed on average two years ago (see Table 2).

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Table 2 Demographic and medical characteristics of the interviewed participants (n ¼ 12). Characteristics

M (SD)

Age Time since diagnosis (years)

54.1 (10.2) 2.6 (2.7) %

Marital status Single Married/Common law Separated/Divorced Ethnic background Caucasian Asian Working status Employed full time Employed part time due to illness Unemployed due to illness Unemployed Retired Education Some university/college University/college degree Graduate degree Family income ($) $100,000 Missing Cancer diagnosis Breast Ovarian Cancer stage I II III

14.3 78.6 7.1 85.7 14.3 50.0 7.1 7.1 7.1 28.6 7.1 50.0 42.9 9.1 9.1 e 18.2 18.2 45.5 21.4 71.4 28.6 35.7 35.7 28.6

Data collection The primary source of data collected consisted of in-depth openended interviews, averaging 45 min each. Interviews were conducted within four months following the women's participation in the pilot study CE group intervention. Authors C.M. and C. T. conducted the interviews where they explored women's views and satisfaction with their participation in the group intervention, as well as their experiences in the completion of the requested inclass and take-home exercises. Participants were also asked about their views on the different coping strategies taught and practised in the group. To gain insight into the helpfulness of the specific aspects of the group program that seemed most relevant in assisting the women to deal with FCR, the interviewers prompted the participants with questions such as, “What would you categorize as the most helpful exercise and learning that has helped you deal or not with your FCR?” Interviewers also asked women what they felt was least helpful in helping them deal with their FCR and asked about changes they would recommend to improve the group intervention. The last part of the interview focused on the women's overall opinions of the group and their satisfaction with taking part in an FCR group intervention. Interviews were audiotaped, transcribed, and then coded using the qualitative data analysis software NVivo 10.

Data analysis Recruitment, data collection, and analysis were conducted iteratively over seven months. Each interview began with the interviewer asking the women to describe openly what it was like

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to participate in a group study. However, open-ended interviewing assumes that meanings, understandings, and interpretation cannot be standardized (Denzin, 1989). In this sense, during the data collection period, C.M. and C.T. refined the interview guide based on participants' introduction of new meanings and structures that informed their experience in taking part in the pilot intervention study. Following completion of interview transcriptions, C. M., C. T., and M. S. independently open coded each transcript, line by line. The generation of provisional headings and extracted text excerpts that illustrated the participants' experience and satisfaction in taking part in group work were recorded. The three authors compared their coding sheets containing the coding categories and subcategories, and discussed them until they achieved consensus (Graneheim and Lundman, 2004). This involved regrouping some of the coding categories and developing a thorough description of each one. Trustworthiness of the data was enhanced by having more than one researcher conduct the interviews and by having the two main authors (C. M. and S. L.) review the first three interviews for conformity in their focus on FCR and the women's experiences in taking part in group work. During the interviews, the authors reviewed their initial understanding and interpretation of the women's accounts with the women as a way to verify the credibility of the data interpretation. Authors who conducted the interviews had not co-led the groups in which their interviewees participated.

but also that others were dealing with these worries about cancer returning.

Findings

Learning emotional control

Within the women's accounts, we searched for overarching themes that related to their experience and satisfaction in taking part in the CE group intervention for FCR. Three themes were formulated to represent their overall experience and satisfactiondembracing the experience of group work, learning emotional control, and satisfaction with session content. Context of the intervention with quotes from the interviewees are used as appropriate.

Overall, 11 of the 12 women reported that their group work experience was rewarding. All participants described their group experience as beneficial in terms of providing them with the skills necessary to cope more effectively with FCR. Most of the women said they benefitted from the group work as early as following the first session. They felt more informed about how to recognize the emotions linked to their FCR, and how to live with and control these emotions. While cognitive reframing taught in the group sessions was new to all women, they found this skill particularly helpful when feeling anxious about new sensations, such as aches and pains. They described some reframes particularly useful, such as the cognitive-reframing mantras “A thought is just a thought. It is not reality” and “I am calm, I am in control”. Some women suggested that using cognitive reframing to recast their thoughts helped them to control their emotions in a positive manner and to avoid “spinning out of control” (Interview 1). Some of the women reported negative experiences from the group work. For two of the 12 participants, feeling more control over their negative emotions came only after the sixth session. One woman said that she felt that she worsened over the six weeks of the group because she was confronted to think about difficult topics. However, this woman also reported that she learned to control her emotions as she continued in the program. In describing her experience, she said, “It was like the Pandora's box, which made things worse for me. I came out of it worse, I think than when I went indI suppose in some ways more in control because I forced myself” (Interview # 3). She decided to continue until the end of the six sessions because she felt that the group helped her in other areas of her life, such as learning coping strategies to control her anxiety. This participant explained that it took until the end of the six sessions to understand that exposing yourself to your fear was a proper strategy in confronting it so that effective coping strategies could be planned to mitigate its consequence, such as experiencing heightened distress. By staying within the group, she realized she gained control over her emotions. The women commented that, even though they had difficulty talking about their fears and worries in the sessions, they

Embracing the experience of group work and feeling less alone Attending a group intervention was a first experience for all of the women, although some participants reported previous experience with one-to-one counselling and individual telephone support. Some women felt apprehensive before the start of the group intervention. However, they explained that much of this apprehension was relieved with the pre-interview session that took place one week before the start of the six sessions detailing group work process and expectations. Still, the women reported initially being unsure as to how to open up and discuss sensitive topics with strangers and wondered about their feelings in this process. The participants described how surprised they were in the first session at finding that they appreciated the opportunity to tell their stories and hear the others discuss how FCR was a struggle for them. As two women said, “I had a really good experience. Some of the topics were difficult to discuss and go into, but I think it was well worth it” (Interview #2). I found the group a very positive experience. I looked forward to attending all the sessions; I walked away feeling lighter from it, and looked forward to meeting the people each time, and felt a little sense of loss at the end.” (Interview #7) In the group, the women reported that they soon realized that their fears were not irrational but rather universal with others having similar experiences. The similarities they noticed and discussed confirmed for them that not only were their fears legitimate

“I felt that overall it was very helpful. It helped me realize that my feelings and concerns were valid and that, you know, I wasn't alone. The rest of the group was experiencing some of the same fears or concerns. So it was nice to know that I wasn't alone.” (Interview #6) Although the women's cancers were diagnosed at different stages (I to III), the women were reminded that what brought them together was the women's underlying FCR, which knew no bounds. One woman described the group cohesion as follows: “I found it quite fulfilling; right from the beginning, everybody hit it off. There were people at various stages of experiences but everyone could really relate to the main subject. There just seemed to be a common thread right from the beginning.” (Interview #5) Their shared struggle with FCR added to their comfort to the weekly meetings and the meeting place started being seen as a safe haven to openly discuss their struggle and share strategies to cope with their fears.

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surprisingly found that the sessions helped them to control their emotions with the coping skills they learned. The women particularly enjoyed learning new coping skills shared by other women in the group and found that they would apply other women's strategies to help them deal with their own FCR. When we asked women to provide an example of a coping skill they had learned and a context in which they had applied it, a frequent example was the use of calming self-talk phrases to lower their anxiety while sitting in the waiting room before cancer screening appointments. One of the examples was, “I can do this. I have gone through this before, and I can do it again”. These specific self-talk phrases had been shared among the women during an in-class exercise and reportedly helped the women to face negative-emotion triggers during emotionally disturbing activities outside the group, such as follow-up screening tests. As three women explained: “I've learned that I'm more in control, that I can be more in control of the emotions. I think that was one of the important things that I did learn there that I don't have to let things run away, or get out of hand, then I can kind of step in and say, ‘Hey! Hold it!’” (Interview #1) “Absolutely, it did help … the group helped me with trying to be more in control of my emotions.” (Interview #4) “It has helped me. I still use the techniques when I feel anxious.” (Interview #2) The women were also taught not to avoid their thoughts and fear about cancer recurrence, but rather to confront their fears, to expose themselves and to be mindful of them, and to see them for what they aredjust thoughts. They were also shown how to restructure their thoughts into more realistic outcomes, and given opportunities to practise such methods in dealing with their thoughts. The women reported feeling empowered by these new skills and reported that they applied them following the end-ofthe-group intervention to deal with FCR and other difficult moments in their lives. At the time of the interview, the majority of the women had ended their group work over three to four months. “The more important thing is that I'm willing to recognize the emotions and live with them. I seriously use our mantras about doing the best I can, a thought is only a thought. Not just in facing cancer, but you know, in the real and the rest of the world too.” (Interview #8)

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diagnosis had a huge impact on their lives and continued to do so; hence their reason for taking part in a group intervention for FCR. Participants indicated that the group intervention provided them with a sense of safety and normalized the experience of having a continued FCR, in contrast to a previous sense of it being a “shameful emotion”. As one woman said: “At first, I was a little apprehensive … I was amongst strangers, so that was a little difficult, but after the first week, it felt very comfortable … it was like a little refuge from the world, a place to safely discuss my fears of recurrence.” (Interview # 8) The women also reported that they felt comfortable in the groups. One woman commented that, even though she was much older than the other members of her group, she felt like she fitted in. Relationships were built, and some group members continued to meet socially after the groups ended. “The fact that I was able to freely discuss emotions with other people who were unfortunately in the same situation was most beneficial. It gave me a feeling that I wasn't alone and that I can do the best that I have in the time remaining. This was sort of an island of sanity.” (Interview #9) “It was like a little refuge from the world. So, it was really awesome for me.” (Interview #8) The study investigators also asked about the setting of the group intervention as they were aware that past fears and images are likely to resurface given that the group work took place in the same hospital where most of the participants received their cancer treatment. Returning to the treatment site is known to possibly trigger FCR (Gil and et al., 2006). As one woman told us: At first, it made things a bit worse, having to go to the hospital, and then also hearing everybody else's story and having to review your own story … you kind of were confronted with the whole thing again. And as a result, I felt actually worse in the beginning, but then, I did recover, and especially afterwards, I really felt the helpful effects. (Interview #1) To avoid triggering past fears, the authors tried to create a comfortable “refuge” that did not feel like a hospital environment. The sessions were held in the hospital's community room, which is set up more like a home setting with chairs, fixtures, framed pictures and flowers.

Satisfaction with session content: session content done right Most helpful session content Three women commented that whoever had developed the content and timeline for the six sessions had “done it right”, as one woman said. They described how they enjoyed the flow of the sessions and how they built upon each other. When asked about the homework, even though completing the tasks was difficult for more than half of the women, most felt that the home exercises helped them review past sessions and prepare them for the upcoming one. When asked if sessions should be biweekly rather than weekly, all the participants responded that they looked forward to their weekly meetings and would not want them to be less frequent. They viewed the sessions as opportunities to freely discuss their fears, as they did not feel comfortable talking about their FCR with family members, friends and acquaintances. They also explained that they feared the reactions from others, in that they felt expected to feel grateful to be alive and that they should be returning to their previous routines. This expectation for the women was incongruent with their reality in that their cancer

In one particular group exercise in session 4, the women had to think of the scenario they most feared when they thought about their cancer returning. They were asked to visualize and discuss this scenario within the group. The most common scenario was their own death and leaving their families behind, especially their children. While this session was definitely viewed as emotionally laden, the women nonetheless appreciated the exercise to openly and safely discuss their most difficult scenario. The women shared how the exercise helped them to find the meaning to their most feared scenario and enabled them to identify strategies to confront the problem into more manageable parts with more realistic outcomes. They reported that the strategy of cognitively reframing their worst fears into more realistic possible outcomes lessened their anxiety and fear. One participant described how she found reassurance in her husband upon sharing her worst fear of leaving the children behind. Overall, the women found this exercise to be

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one of great benefit, as it forced them to openly talk about their fears with other women facing similar struggles and to strategize to produce a more realistic outcome. The women also appreciated the altruistic support that they received from each other and the skills taught in the group, including relaxation exercises, visualizing of total body scans to locate tense areas, and self-talk phrases They learned how to apply these coping strategies in times of high distress; for example, hearing of a friend's cancer recurrence or feeling a new body ache. Reporting on their preferred coping strategies, the women indicated the use of calming self-talk phrases as helpful, especially when they experienced internal or external triggers of their FCR. Many participants said they particularly found the statement “I am doing the best that I can. I have been there before, and I can deal with this again” to be a very useful strategy. Other helpful exercises included rating emotions and then using cognitive reframing to help decrease feelings of negativity. This technique could also be combined with affirmations, which are self-talk phrases that help to control and decrease negative or intrusive thoughts by learning calming and comforting words or sentences such as saying “I am afraid my cancer will come back but this feeling of uncertainty is only temporary. I am in control” (Gil and et al., 2006). These affirmations were previously used in an uncertainty management intervention for women with breast cancer (Gil and et al., 2006). The women were also encouraged to formulate some of their own affirmative self-talk phrases. Three women described how they applied emotional ratings, cognitive reframing, and affirmations: “Assigning a number to my emotion todaydlike today now I feel a little better, I find that very difficult to put into numbers. Now I can put a number if in absolute panic and deal with it using the exercises.” (Interview #1) “The affirmation, and a lot of the cognitive reframing of thoughts, has helped me control my emotions. You know, a different way of thinking. This has helped me deal with the death of someone who got recurrence after 19 years, and I used reframing.” (Interview #7) “I'm doing the best that I can. We all took that forward and added it as one of our affirmations in addition to our own. I'm doing the best that I can.” (Interview #4) Several women found the closing grounding exercise most helpful. For example, at the end of each session, one of the group leaders narrated a 3-min grounding exercise, which aimed to bring relaxation closure to the session. One woman commented: “The grounding exercise at the end of every session was my favourite time of the week every week when I was here. When I would leave, I could just think of some of those things, ‘I'm doing the best that I can’, and things like that you could carry them over.” (Interview #8)

Least helpful session content Although the women shared that the group intervention as a whole was very helpful, the least helpful part of the intervention for them was the session where a nurse was invited to join session 2 to present on the signs and symptoms of cancer recurrence. The women felt the information given by the nurse specialist was too detailed and clinical, and too early in the sessions. They also found the information challenging to hear, overwhelming, and frightening. One woman commented:

“I didn't like when the nurse came in and was talking about metastasis, I mean she was very knowledgeable, but it just was sort of hit home, you know, the way cancer can reoccur and so on.” (Interview #5) In the pilot intervention study, the group leaders reported that they noticed, in the second session, that some group members appeared uncomfortable and upset after listening to the breast cancer nurse specialist's presentation. Two participants from one breast cancer group opted to drop out of the study following the second session. As a result, the principal investigators of the pilot intervention study had the nurse specialist shorten her presentation to 20 min and lighten some of the content resulting in fewer requests to drop out. Nonetheless, the 12 women interviewed for this study agreed that some changes were still needed in the nurse specialist's presentations. One recurring recommendation was to have her answer questions submitted by group members during the week before her visit to the group. Session content to improve The women suggested the following other improvements for future groups: 1) having a cancer survivor come to discuss her experience with the CE group intervention for FCR, 2) more CBT sessions, and 3) some debriefing or check-in time at the end of the more emotionally draining sessions. As one participant remarked, “These women come here and bare their souls for 90 min and it's very, very intense, and then we all walk out and hop on the subway” (Interview #3). The women also suggested moving the nurse visit from session 2 to session 3. The participants still felt ill-prepared in session 2 and not yet skilled at controlling their heightened emotions when hearing of the possible signs and symptoms of cancer recurrence. Discussion While the statistical results of the pilot intervention study (Lebel and et al., 2014) indicated that the CE group intervention appeared to reduce FCR, cancer distress, uncertainty, and improve coping skills and quality of life, the qualitative study enhanced our understanding of specific elements of the group that women found beneficial. In addition, the women provided important input for further refinement of the intervention. Overall, as was consistent with prior studies of group interventions (Spiegel and Spira, 1991; Kissane and et al., 1994; Spiegel et al., 1981), the participants found that openly sharing their personal issues was helpful. The safety and universality of the women's experiences facilitated group cohesion and supported the women to feel less apprehensive about discussing a sensitive topic (Kissane and et al., 1994; Yalom and Leszcz, 2005). Furthermore, the group experience was perceived to be distinctly unique to that of their experiences outside of the groupda frequent finding and benefit of group programs (Yalom and Leszcz, 2005). This element helped women to appreciate the weekly meetings, as meeting other women with similar feelings served to normalize their fear, despite the women having had successful cancer treatments. All of the factors helped them to feel less alone, an important outcome of group interventions (Spiegel et al., 1981; Yalom and Leszcz, 2005). The group work experience contributed to validation of their experience and may have taken the women out of the social isolation resulting from their cancer diagnosis (Yalom and Leszcz, 2005) more effectively than through individual approaches. Through this altruism, the women learned that they could contribute in significant ways to the experience of others through

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their support, reassurance, suggestions, and insight. The women mentioned that the group experience gave them an opportunity to realize they could provide support to others which is an important component of group work towards building group cohesiveness. This aspect of the intervention likely contributed to the women feeling more comfortable with their decision to take part in group work. Seeing how others learned to cope effectively with their fears over the course of the six-week program had most likely the effect of instilling hope (Yalom and Leszcz, 2005; Goodwin and et al., 2001) that they could overcome their FCR. As group work theories present, group members generally learn coping skills more effectively from the modelling of peers than from experts (Yalom and Leszcz, 2005). While many exchanges did take place in the group sessions, participants varied in their willingness to confront their fears particularly in the early sessions, leaving some women feeling more uncomfortable. However, as the sessions progressed and as the women became accustomed to the safety in the group and acquired coping skills, all of the women were able to openly express their fears and specific thoughts associated with them. This allowed them to receive the direct benefits of the group support, i.e. open expression, validation, inspection and examination of specific catastrophizing thoughts or helpful appraisals (Spiegel and Spira, 1991; Yalom and Leszcz, 2005). Many of the coping skills e.g. reframing, self-talk and relaxation techniques were new to the women. In particular, participants reported that they appreciated building skills in examining their cognitive appraisal and in reframing them, as it helped them to think differently and more realistically in terms of what proof existed to support their thoughts, irrational or rational. As the group intervention progressed over the weekly sessions, these skills became particularly useful as the women further exposed themselves to feared images and thoughts. The group format allowed for the women to assist each other to reframe emerging personal scenarios into more realistic possible outcomes. The exercise asks the women to rate their anxiety about their most feared scenario. Group participants came to experience a decrease in their stress levels over the repeated scenarios that provided them with exposure to their fears. Applying cognitive reframing along with the other new coping skills helped the women feel more in control of their emotions as they encountered intrusive FCR triggers (Gil and et al., 2006). While the use of cognitive reframing to help alleviate anxiety and worry in cancer survivors is not new (Kissane and et al., 2003; Montel, 2010), its use in a brief group format specifically developed to address issues of FCR is a first. Another coping skill that was highly appreciated by many women because of its versatile applicability was the use of calming self-talk phrases. This technique has been used successfully in past cognitive behavioural modification interventions; the group intervention utilized phrases identified in the literature as those most effective (Gil and et al., 2006; Hatzigeorgiadis and et al., 2009). Consistent with previous reports, the women in our qualitative study described using calming self-talk phrases in addition to cognitive reframing to control negative emotional reactions to FCR triggers (Theodorakis et al., 2008). Overall, in the course of the six group sessions, a range of coping and relaxation techniques were offered (see Table 1) to help the women manage the effects resulting from an FCR trigger. The specific techniques appealed differently to each participant, and they were free to practise whichever techniques interested them the most. The group leaders strongly encouraged the participants to practise at least one technique daily. Although we did not document how frequently the women practised the coping skills they chose, knowing which skills they chose to apply and which skills provided the best outcomes for them could be of interest in future research.

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In relation to what aspect of the group intervention was least helpful, 10 of the 12 women in our study found the breast cancer nurse specialist's presentation on possible signs of cancer recurrence challenging. The women explained that the presentation was too technical, too frightening, and occurred too early in the sessions. This didactic aspect of the intervention likely was too direct a confrontation of their fears. Based on the experiences in the first two groups, the research team reconsidered the intervention program, given the likely explanation that the women had not been given enough time by the second session to master coping skills that might have helped them deal with this very direct FCR trigger. The group format was changed with future groups receiving a less explicit presentation by the nurse visitor. The findings from this study suggest further that the nurse specialist's presentation be moved towards the middle of the sessions, such as the third session, after the women have had time to acquire additional coping skills. Furthermore, it was suggested that the nurse's presentation also include information on communication skills to prepare participants for their follow-up cancer screening appointments. The group intervention might consider focussing more on enabling women to seek information about possible signs and symptoms of recurrence themselves, instead of a nurse directly providing the women with the information before they may be ready to hear and absorb it. Study limitations, conclusion and clinical recommendations While this study provided additional information concerning the group intervention's important mechanism that may have contributed to change, the findings from this qualitative study are specific to the 12 women with breast and ovarian cancer who took part in the CE group intervention described above. Therefore, the findings may not reflect the views of all the other breast and ovarian cancer survivors who took part in the pilot intervention or represent participants who dropped out of the pilot study. While the qualitative study sample was small, it comprised women with a diverse range of experiences who took part in the CE group intervention. Despite the range of experiences, there was consensus that the group experience was beneficial and the 12 women interviewed would recommend such an intervention to other cancer survivors who are experiencing FCR. Our study of the experiences of breast and ovarian cancer survivors who take part in CE group intervention addressing FCR offers valuable insight regarding the satisfaction of group participants with this type of intervention. Although some women showed initial apprehension about taking part in group work, they were able to overcome it and benefitted from the group. The women's positive comments could be shared with prospective participants to assuage their uneasiness with group work. The findings from this study and from the pilot intervention study evaluating the CE group intervention speak to the importance of providing psychosocial interventions as part of regular care for cancer survivors. It is our hope that, in the near future, CE group interventions will become part of standard care for all cancer patients dealing with fear of cancer recurrence. Acknowledgements This research was supported by the Canadian Institutes of Health Research (Grant # CIHR: SUR103393) through a Catalyst Grant to Sophie Lebel (PI) and Christine Maheu (co-PI) and by a matching fund from the Canadian Nurses Foundation, Nursing Care Partnership Program to Christine Maheu (PI) and Sophie Lebel (co-PI).

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Breast and ovarian cancer survivors' experience of participating in a cognitive-existential group intervention addressing fear of cancer recurrence.

Currently, very few clinical approaches are offered to cancer survivors dealing with fear of cancer recurrence (FCR). This paper provides an overview ...
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