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2 mutation carriers—A qualitative study
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Research paper
Inquiry-based stress reduction (IBSR) meditation technique for BRCA1/ 2 mutation carriers—A qualitative study Carla Landaua,b,1, Inbal Mitnika,1, Jiska Cohen-Mansfielda , Efrat Tillingera , Eitan Friedmanc, Shahar Lev-Aria,b,* a b c
Department of Health Promotion, School of Public Health, Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel Institute of Oncology, Tel-Aviv Medical Center, Israel and the Sackler Faculty of Medicine, Tel-Aviv University, Tel Aviv, Israel The Susanne Levy Gertner Oncogenetics Unit, Sheba Medical Center, Tel-Hashomer and the Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel
A R T I C L E I N F O
A B S T R A C T
Article history: Received 21 September 2015 Received in revised form 4 April 2016 Accepted 5 April 2016 Available online xxx
Introduction: BRCA1/2 mutation carriers deal with a substantially elevated risk for developing breast and/ or ovarian cancer. This state has profound implications on various psychosocial aspects in carriers’ lives. The aim of the current study was to qualitatively evaluate the effect of an Inquiry-Based Stress Reduction (IBSR) meditation technique on BRCA1/2 carriers. Methods: Fifteen BRCA1/2 carriers completed a 12-week IBSR intervention, a meditation technique, which aims to identify and investigate stressful thoughts. Semi-structured interviews were conducted before and after the intervention. The interviews were analyzed using the Interpretative Phenomenological Analysis method. Results: The data analysis revealed that IBSR technique positively affected three important and central dimensions in women’s lives- their inner-emotional world, their experience as a BRCA carrier and their interpersonal interactions. These dimensions were found to be related to psychological well-being, a factor with important physical and mental health implications. Conclusions: This qualitative study demonstrated that the implementation of IBSR meditation technique among BRCA carriers has a positive effect on emotional and interpersonal dimensions. Future studies are warranted to devise the means for clinical implementation of IBSR as adjunct to traditional genetic counseling. ã 2016 Published by Elsevier GmbH.
Keywords: BRCA1/2 mutation carriers Cancer IBSR meditation “The Work” Psychological well-being Qualitative study
1. Introduction Women who carry the BRCA1 or BRCA2 gene mutation deal with a substantially elevated risk for developing breast and/or ovarian cancer [1,2]. Studies have shown that being a BRCA1/2 mutation carrier has profound implications on various psychosocial aspects. Carriers cope with emotional stress and uncertainty regarding the future [3]. They find it difficult to make lifelong plans (e.g., occupational changes) due to the belief that their time of good health is limited [4–6]. Carriers fear that cancer might be diagnosed at any given moment and without any warning [7,8]. They deal with an experience of being in a “twilight zone” between health and sickness, a constant tension between physical health
* Corresponding author at: Center of Complementary and Integrative Medicine, Institute of Oncology, Tel Aviv Sourasky Medical Center, 6 Weizmann st., Tel Aviv 64239, Israel. E-mail address: [email protected] (S. Lev-Ari). 1 Contributed equally to this work.
and potential illness [9]. In addition, being a carrier can affect family dynamics and personal relationships due to the fear of becoming a burden on loved ones and the worry that offsprings might be at risk for cancer as well [10]. Mindfulness interventions are designed to enhance the mind's capacity to be aware of the present moment and to accept one’s current experiences without judgment or elaboration [11]. Several studies have demonstrated that mindfulness meditations could improve quality of life, psychological and physiological symptoms in cancer patients and survivors [12–15]; however, little is known regarding the effect of mindfulness interventions on the BRCA population. Inquiry-Based Stress Reduction (IBSR) is a meditation technique developed by Byron Katie. It helps participants identify stressful thoughts in a systematic and comprehensive way, and to mindfully “investigate” them by a series of questions and turnarounds, thus reducing their perceived level of stress. Like other psychological models, such as cognitive behavioral therapy, IBSR technique assumes that thought precedes feelings and behavior and thus it is
http://dx.doi.org/10.1016/j.eujim.2016.04.001 1876-3820/ ã 2016 Published by Elsevier GmbH.
Please cite this article in press as: C. Landau, et al., Inquiry-based stress reduction (IBSR) meditation technique for BRCA1/2 mutation carriers—A qualitative study, Eur. J. Integr. Med. (2016), http://dx.doi.org/10.1016/j.eujim.2016.04.001
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the primal cause of stress and suffering [16,17]. Yet, unlike cognitive restructuring, that addresses deliberative thinking and rationality to answer questions, IBSR relies on one’s inner wisdom [18,19]. This process produces an essentially different experience as its discoveries feel as an emotional insight [19]. During the meditative process, people acknowledge their natural responses, which lead to a sense of self-control and inner peace, similar to other meditation techniques [16,20–23]. This technique does not require any intellectual, religious or spiritual preparation, but rather a will to reach self-awareness [16,17]. A randomized controlled research was carried out at the OncoGenetics Unit in Sheba Medical Center, Israel [24]. The current study is the qualitative part of the research and aims to qualitatively evaluate the effect of IBSR meditation technique on BRCA1/2 carriers. Qualitative research is a broad methodological approach that aims to deepen the understanding and knowledge regarding people's inner experience and to analyze the way they interpret and give meaning to their personal and social world. It is concerned with the subjective perception, as opposed to quantitative tools, such as questionnaires, which provide objective measures [25]. To the best of our knowledge, this is the first study that uses qualitative tools in order to evaluate the efficacy of IBSR technique. 2. Methods 2.1. Recruitment and sample A study was carried out at the Onco-Genetics Unit in Sheba Medical Center, Israel. All cancer-free Jewish women who were genotyped at the unit between January 1, 2000 and December 31, 2010 were eligible for recruitment if they harbored any of the predominant pathogenic mutations in either the BRCA1 or the BRCA2 genes and were being followed-up in the high-risk clinic at Sheba’s “Meirav” Center. All eligible women (n = 67) who agreed to participate, were randomly assigned to either intervention or control group. The intervention arm (n = 33) included two groups who met on different days of the week. The participants were assigned to each group according to their schedule preferences. One group (n = 15) was selected randomly and its participants were contacted by phone and were informed about the qualitative research. All the women agreed to participate in the study. The researcher interviewed all 15 women and realized that common contents emerge from the interviews, with no new theoretical insights, as defined by the theoretical concept of “saturation” [26]. The study was approved by the Ethics Committee of Sheba Medical Center. All the participants completed an informed consent form before study entry. 2.2. Intervention method The first stage of the IBSR technique involves identifying stressful thoughts in a systematic and comprehensive way and writing down the thoughts about various situations perceived by the person as stressful by using “Judge-your-neighbor” worksheet. (Appendix A) [16,17]. In the second stage, the participants choose the main thoughts they had written down and investigate them by using four questions and “turnarounds”. Examples of stressful thoughts are: “My husband doesn’t listen to me”, “I will have cancer for sure”. The participants examine their thoughts by the following questions: (1) Is it true? (2) Can I absolutely know that it is true? (3) How do I react when I believe that thought? (4) Who would I be without the thought? This stage is meditative and the participants are guided to search the genuine answers to the four questions with no pre-defined agenda. The guidance is to be in a state of witnessing awareness in which a person observes the
thoughts that come into mind without trying to control or direct them. Encouraging this kind of meditative ability is a central component of the technique. The next stage is the turnarounds, in which the participants experience a revised interpretation of reality. For example, if the original thought was: “My husband doesn’t listen to me”, possible turnarounds can be: “I don’t listen to my husband” (turnaround to the other), “I don’t listen to myself” (turnaround to myself), “My husband does listen to me” (turnaround to the opposite). The participants are asked to find three genuine examples in which the turnaround is as true as the original thought. By doing so, the participants can understand and experience that they do not have to automatically trust the stressful thoughts, but can choose different interpretations of reality. This way, situations perceived as stressful, such as a visit to the doctor, can be experienced with peace of mind and connectedness [16,17]. The technique involves consideration of “three kinds of business”: My business, the other's business, and the universe's business (things we have no control over). The assumption is that most of the time we are occupied with thoughts that are not necessarily related directly to “our business”. It invites the participants to be aware, inquire and let go of these thoughts, hence becoming less judgmental about their surroundings, According to Byron and Stephen [16]: “Much of our stress comes from mentally living out of our own business. When I think, ‘You need to get a job, I want you to be happy.,’ I am in your business. When I’m worried about earthquakes.or when I will die, I am in God’s business. If I am mentally in your business or in God’s business, the effect is separation. The IBSR intervention included weekly group meetings (3.5 h/ meeting) and weekly individual sessions with a facilitator (1 h/ session) for 12 weeks. The group meetings were guided by two facilitators trained at “The Institute of The Work”, an international learning center based in the US [27]. All the sessions were standardized according to a training manual, developed for maintaining consistency in the program. The home practice included a weekly investigation of a stressful event by using “Judge-your-neighbor” worksheet. In addition, participants had a weekly phone call with a facilitator and performed an investigation with him over the phone. Participants were considered active if they were present in at least 75% of the group meetings and completed 75% of the home practice. The facilitators had a short meeting after each group session (15–30 min), to evaluate the intervention process. In addition, they provided the principle investigator a weekly written report regarding the individual sessions. 2.3. Data collection Data was collected by using semi-structured interviews. The interviews were conducted during the week before and after the 12-week intervention. None of the women chose to have the interview at their house due to privacy considerations. The goal of a semi-structured interview is to create an open dialogue between the interviewer and the interviewee and to provide the opportunity for people to tell their story openly and freely with minimal interference [25]. At the first interview, women were asked the following question: “What benefits do you wish to receive from the intervention?" in order to estimate their expectations regarding the workshop. At the second interview, a general question was presented to the interviewee: ‘Please tell me about your experience in the workshop’. When required, elaboration or clarification questions were asked. During the interviews, a recording device was used in order to document the interviews precisely as possible. The interviews were transcribed, while ensuring that personal information remained confidential.
Please cite this article in press as: C. Landau, et al., Inquiry-based stress reduction (IBSR) meditation technique for BRCA1/2 mutation carriers—A qualitative study, Eur. J. Integr. Med. (2016), http://dx.doi.org/10.1016/j.eujim.2016.04.001
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2.4. Data analysis The interviews were analyzed using the Interpretative Phenomenological Analysis method [25]. This method aims to investigate people’s experiences from their subjective point of view, while emphasizing the way they make sense of their personal and social world. This method included several phases. First, each transcript was read closely several times; significant topics were marked, and attention was directed to language, use of key words or metaphors. In the next phase; the main topics of each interview were identified and conceptualized into themes; concise phrases that aim to capture the essence of the text. Analytical or theoretical connections between the themes were observed to compose the superordinate themes [25]. In addition; the interviews before and after the intervention were compared in order to compare women's expectations regarding the workshop with its actual contribution. Fig. 1. The qualitative data analysis.
3. Results Fifteen Jewish Israeli women carriers of one of the predominant mutations in BRCA1/2 participated in the first interview before the intervention. Thirteen women completed the second interview. Two women left the program; one due to unwillingness to deal with emotional issues and the other due to religious reasons (difficulty coming to the group meetings on Friday due to repentance). The demographic and medical data of the 15 participants are presented in Table 1. Mean age of participants was 47.6 years. Most of the women were married (86.7%), with children (80%) and had an academic education (60%). Ten participants (67%) underwent prophylactic oophorectomy.
Table 1 Demographic and medical characteristics of the study participants (n = 15). Characteristic Age Age Group
No. (%)
Mean (SD) 47.6 (8.6)
<40 40–45 45–50 >50
4 2 3 6
Marital Status
Married Single
13 (86.7) 2 (13.3)
Children
Yes No
12 (80) 3 (20)
Education
High School Post High School Academic Degree
4 (26.7) 2 (13.3) 9 (60)
Religiousness
Secular Traditional Religious Missing
12 (80) 1 (6.7) 1 (6.7) 1 (6.7)
Country of origin
Israel Other
14 (93.3) 1 (6.7)
(26.7) (13.3) (20) (40)
Number of breast and ovarian cancer Cases in family
2.53 (1.07)
Number of other cancer cases in family
1.4 (1.11)
Prophylactic oophorectomy SD = standard deviation.
Yes No
10 (66.66) 5 (33.33)
The data analysis revealed four superordinate themes (as detailed in Fig. 1). The personal data, including the participants’ name, remained confidential, according to study protocol, approved by the institutional ethics committee. The participants’ names in the following section have been changed in order to ensure their privacy. “Myself”- This superordinate theme includes various topics regarding the inner world of the women, their concerns and conflicts, as well as their strengths and abilities. Most of the women dealt with the dilemma of how much they deserve to place their personal needs in the center: “I try to put myself in the center . . . I go to workshops, something I never did before. I learnt how to say no.” (Irit), “I used to think about others all the time, I didn’t put myself in the center” (Miri). They described personal fears and emotional difficulties, such as: “I felt that life became too difficult. Too many issues to deal with” (Nira). However, women also described their inner strength and their ability to cope with these difficulties: “I felt brave and so strong. I am so lucky to be like that. I practice Buddhism. I read. I exercise” (Vered); “I made a lot of changes, I am more at home. I am more positive, more optimistic” (Michal), “I do reiki. It is very relaxing. I write things when I get nervous. I read books” (Rachel). “Being a BRCA carrier”- Women described various issues regarding their medical state. They experienced anxiety and stress: “The day I discovered it, I was shocked. I didn’t know how to react. it was horrible” (Gilat). They were worried due to the high risk of cancer and expressed fears and loss of control: “Last year I had MRI. I was so scared and distracted while waiting for the results” (Michal). “The surroundings”—Women described different interactions with their surroundings, usually as stressful and demanding, and apparently it was not always related to their medical condition, for example: “He is a brilliant kid. but he has a short temper and it leads him into troubles . . . I was worried what will happen in Junior High (Irit), “On our daily routine, we encounter various stressors, problems and difficulties we have to deal with. Sometimes it is difficult to cope. The world seems like a terrible place” (Gilat). As shown in Fig. 1, these three superordinate themes overlap, for example- being a BRCA carrier is a major cause of concern for the women: “The fact that I know I am a carrier feels like a gun pointing at me. You have a constant fear” (Miri). In addition, the mutation affects their close relationship: “What will be with my children? Who is a carrier and who is not? Who might pass it to future generations? One of my dilemmas is when should I tell them they need to have the tests” (Rivka), “I hope that if I am diagnosed with cancer, I
Please cite this article in press as: C. Landau, et al., Inquiry-based stress reduction (IBSR) meditation technique for BRCA1/2 mutation carriers—A qualitative study, Eur. J. Integr. Med. (2016), http://dx.doi.org/10.1016/j.eujim.2016.04.001
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will know how to cope with it without being a burden on my family (Nira). The data analysis revealed that by using The Work technique, women managed to systematically investigate various issues regarding these three dimensions, which helped them to cope and feel better – “A great gift. and the inquiries, It helped me solve issues” (Vered), “I was surprised how much The Work works. It is practical,. it gives you tools. it is clear what you need to do” (Danit). This revealed the fourth superordinate theme – “The Work intervention technique” which combined the other three superordinate themes. Regarding the intra-personal level, women described an inner change due to the intervention, which included a sense of acceptance, hope and gratitude. They detailed feelings of relaxation and confidence: “The course was excellent. I learnt how to cope with small problems, I think I am more relaxed” (Rachel), “Someone told me- something is different about you, you have changed for the better. You are more confident, more charismatic. I think it is because of The Work. I gained a different perspective” (Margalit). In addition, they described a personal change and a new life perspective: “I see things differently and it helps.. to look at the glass half full.. to accept reality and to try to find a way to deal with it. It (the workshop) helped me perceive life differently” (Margalit), “I didn’t know that our thoughts cause us suffering.. Now I understand that you can’t changes the things that happen to you, but the thoughts” (Jacqueline). Regarding the dimension of being a BRCA carrier, the intervention helped women to better cope with their worriers and difficulties: “You can get tools to deal with the gene. It doesn’t have to control our lives” (Vered), “When she (her daughter) heard the news.. she cried for 24 hours.. now I have tools to talk to her—Are you sure you will have cancer? Is that the truth?” (Nira), “The workshop helped me to deal with the thoughts regarding cancer. I still worry, but I think less. It balanced my thinking and fears” (Irit). In addition, women met other carriers at the workshop. They described a sense of “togetherness” with them: “I am in a group with people like me, we are all equal. We are all in the same situation” (Margalit). Their common experience helped them take things into the right perspective and maintain a positive attitude: “Amazing women. So strong. I admire them, it teaches you not to fear” (Vered), “It was nice to meet women who are in the same state as me. It is the first time I meet other carriers. Amazing women. I learnt from them” (Gilat). Meeting other women who cope with similar issues legitimized their own feelings and difficulties. They described them as a source of support and encouragement, as well as a source of information. Regarding their surroundings, women perceived the program as a practical method for helping them to cope better with stressful interactions. They were highly satisfied with the intervention technique, in particular with the concept of “the three kinds of business” and implemented it in various situations: “The thing that helped me the most was the three businesses. I need to be in control all the time. I felt that I am interfering with other people’s business . . . I am more relaxed. I told myself- leave it, it’s not your business” (Vered), “It (the three kinds of business) really helped me because I was not aware of it before . . . I realized that most of the time we think about other people’s business. The inquiry helped me to be more authentic. and not to interfere” (Michal). In addition, the women described personal and close relationships with the staff and perceived them as a source of motivation for change. They described them as professional, committed and a significant part of the program: “The individual practice with the staff really helped me. I felt their commitment and their willingness to help; they did it with all their heart” (Michal). A comparison of the interviews before and after the intervention revealed that the workshop fulfilled women's prior expectations, such as: to sleep better (Nira), to love herself as she used to before the mutation discovery (Jacqueline), to cope better (Rebecca) or to gain inner strength (Vered).
Although women were satisfied with the intervention, they described several limitations of the workshop. First, while some women continue to practice the technique after the end of the program and most of them reported its efficacy in their everyday lives, others were skeptical about their ability to implement and practice the technique without regular group meetings and the facilitators’ personal guidance. Second, women described difficulties in implementing the new concepts and techniques in one main area—the concerns regarding their children. It seems that this emotional and sensitive issue needs longer and more intense practice with deeper investigation in order to be fully implemented. The workshop improved women’s coping with their medical state; However, it appears that this central issue should also be further practiced in order to be fully resolved: “These rocks are difficult to break. heavy, strong rocks. One is the disease. the second is my child. I think that in order for it (The Work) to help me with these issues, it should really become my way of living, and I am not there yet ” (Michal), “I think I am in the same place regarding the concerns about my children” (Margalit), “It (The Work) helped me to change my attitude regarding disease, death. But it is not stable enough. I don’t know if I am strong enough” (Danit). 4. Discussion The current qualitative research demonstrated the effect of IBSR intervention on BRCA carriers. It revealed that this meditation technique combines and positively affects three important and central dimensions in women’s lives- their inner-emotional world, their experience as being a BRCA carrier and their interpersonal interactions. Women were satisfied with the program, which fulfilled their prior expectations. A theoretical model of psychological well-being includes six dimensions of wellness: (1) Self-acceptance—a positive attitude toward the self, which acknowledges and accepts its good and bad qualities. (2) Positive and reciprocal relationships with others, capability of empathy, affection and intimacy. (3) Autonomy in thoughts and action—ability to resist social pressure and to regulate behavior and thoughts by personal standards. (4) Environmental mastery and competence- ability to manage complex external surrounding, to choose or create contexts suitable to personal needs and values. (5) Purpose in life—a sense of meaning to life. (6) Personal growth and development—feelings of realizing potential, openness to new experiences [28,29]. The effects of IBSR in the current study can be examined in light of this theoretical framework. First, the intervention improved women’s self acceptance, including different aspects of their personal experience, such as being a BRCA carrier. Meeting other BRCA carriers legitimatized their coping process and helped them to accept their feelings and difficulties. Second, it strengthened women’s relationships, specifically with family members and work colleagues. They described more relaxed and authentic interpersonal interactions. This finding is supported by the randomized clinical trial that demonstrated that an implementation of The Work intervention improved perceived family support among carriers [24]. Third, women's increased autonomy in thoughts and action was demonstrated by their ability to put their needs in the center and to attend to them in addition to the needs of their surroundings, which used to have almost an exclusive influence on their decisions. Fourth, their implementation of the intervention’s practical tools increased their ability to manage their surroundings according to their personal needs and deal with external contexts, such as stressful work environment, with a sense of balance and control. Finally, women described a process of personal growth in terms of increased confidence and a new life perspective. Previous studies have demonstrated that positive psychological states have important implications for physical health in aspects of
Please cite this article in press as: C. Landau, et al., Inquiry-based stress reduction (IBSR) meditation technique for BRCA1/2 mutation carriers—A qualitative study, Eur. J. Integr. Med. (2016), http://dx.doi.org/10.1016/j.eujim.2016.04.001
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prevention and recovery processes. For example, the ability to find meaning in response to stressful events was related to positive immunologic and health outcomes (e.g. lower rates of AIDS-related mortality) [30]. Positive affect was found to be related to improved parameters of neuroendocrine, cardiovascular and inflammatory processes (e.g. low cortisol levels, lower heart rate) [31,32]. The correlation between positive psychology and health can be explained by a direct effect, for example encouraging health behaviors (e.g. physical exercise, diet), affecting the autonomic nervous system (e.g. reducing heart rate) and the endocrine system (e.g. reducing cortisol levels). Another possible explanation is that psychological well-being works as a buffer of stress, reducing its negative effects on physiological systems [33]. A study by Tollin [34] demonstrated that reduced psychological well-being is a common phenomenon among BRCA carriers. Given its important implications, it is highly important to address this factor by adequate interventions in order to improve women's physical and emotional health. In accordance with the quantitative analysis of this pilot study [24], which demonstrated preliminary evidence regarding the technique’s effect on perceived family support, the qualitative part revealed the impact on “the surrounding”, one of the main themes of the participants. This finding provide an additional support to the significance of the interpersonal issues for BRCA carriers. However, using qualitative tools, such as a semi- structured interview, helped to investigate the personal experience of the carriers and their interpretations, revealing more significant issues, they deal with, such as intra-personal aspects of coping. We are aware of several limitations in this study. It encompassed relatively few female mutation carriers all from a single medical center in Israel. It included only one IBSR group from the two intervention groups, which might introduced a risk of bias. It
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evaluated only the short-term effects of a short mindfulness intervention. The data was collected by conducting interviews, two personal conversations with the researcher, which may had an effect on the participants, in addition to the intervention itself. In addition, several women described difficulties in implementing the technique by themselves after the end of the intervention, specifically in regard to the implications of being a carrier on their children. To conclude, the current qualitative study demonstrated that the implementation of IBSR intervention in a population of BRCA carriers has a positive effect on emotional and interpersonal dimensions in women’s lives. These dimensions were found related to psychological well-being, a factor with important health implications. These results should be validated in future largescale studies and longer follow-up evaluation in order to expand the understanding regarding the technique's potential efficacy as a tool for improving well-being among a population with elevated risk for developing cancer. Author contributions All research done by the authors. Financial support “The Work” Foundation, a non-profit 501ã organization partially supported this study. Conflict of interest None.
Please cite this article in press as: C. Landau, et al., Inquiry-based stress reduction (IBSR) meditation technique for BRCA1/2 mutation carriers—A qualitative study, Eur. J. Integr. Med. (2016), http://dx.doi.org/10.1016/j.eujim.2016.04.001
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Appendix A. “Judge-Your-Neighbor” worksheet*
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Research paper
Inquiry-based stress reduction (IBSR) meditation technique for BRCA1/ 2 mutation carriers—A qualitative study Carla Landaua,b,1, Inbal Mitnika,1, Jiska Cohen-Mansfielda , Efrat Tillingera , Eitan Friedmanc, Shahar Lev-Aria,b,* a b c
Department of Health Promotion, School of Public Health, Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel Institute of Oncology, Tel-Aviv Medical Center, Israel and the Sackler Faculty of Medicine, Tel-Aviv University, Tel Aviv, Israel The Susanne Levy Gertner Oncogenetics Unit, Sheba Medical Center, Tel-Hashomer and the Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel
A R T I C L E I N F O
A B S T R A C T
Article history: Received 21 September 2015 Received in revised form 4 April 2016 Accepted 5 April 2016 Available online xxx
Introduction: BRCA1/2 mutation carriers deal with a substantially elevated risk for developing breast and/ or ovarian cancer. This state has profound implications on various psychosocial aspects in carriers’ lives. The aim of the current study was to qualitatively evaluate the effect of an Inquiry-Based Stress Reduction (IBSR) meditation technique on BRCA1/2 carriers. Methods: Fifteen BRCA1/2 carriers completed a 12-week IBSR intervention, a meditation technique, which aims to identify and investigate stressful thoughts. Semi-structured interviews were conducted before and after the intervention. The interviews were analyzed using the Interpretative Phenomenological Analysis method. Results: The data analysis revealed that IBSR technique positively affected three important and central dimensions in women’s lives- their inner-emotional world, their experience as a BRCA carrier and their interpersonal interactions. These dimensions were found to be related to psychological well-being, a factor with important physical and mental health implications. Conclusions: This qualitative study demonstrated that the implementation of IBSR meditation technique among BRCA carriers has a positive effect on emotional and interpersonal dimensions. Future studies are warranted to devise the means for clinical implementation of IBSR as adjunct to traditional genetic counseling. ã 2016 Published by Elsevier GmbH.
Keywords: BRCA1/2 mutation carriers Cancer IBSR meditation “The Work” Psychological well-being Qualitative study
1. Introduction Women who carry the BRCA1 or BRCA2 gene mutation deal with a substantially elevated risk for developing breast and/or ovarian cancer [1,2]. Studies have shown that being a BRCA1/2 mutation carrier has profound implications on various psychosocial aspects. Carriers cope with emotional stress and uncertainty regarding the future [3]. They find it difficult to make lifelong plans (e.g., occupational changes) due to the belief that their time of good health is limited [4–6]. Carriers fear that cancer might be diagnosed at any given moment and without any warning [7,8]. They deal with an experience of being in a “twilight zone” between health and sickness, a constant tension between physical health
* Corresponding author at: Center of Complementary and Integrative Medicine, Institute of Oncology, Tel Aviv Sourasky Medical Center, 6 Weizmann st., Tel Aviv 64239, Israel. E-mail address: [email protected] (S. Lev-Ari). 1 Contributed equally to this work.
and potential illness [9]. In addition, being a carrier can affect family dynamics and personal relationships due to the fear of becoming a burden on loved ones and the worry that offsprings might be at risk for cancer as well [10]. Mindfulness interventions are designed to enhance the mind's capacity to be aware of the present moment and to accept one’s current experiences without judgment or elaboration [11]. Several studies have demonstrated that mindfulness meditations could improve quality of life, psychological and physiological symptoms in cancer patients and survivors [12–15]; however, little is known regarding the effect of mindfulness interventions on the BRCA population. Inquiry-Based Stress Reduction (IBSR) is a meditation technique developed by Byron Katie. It helps participants identify stressful thoughts in a systematic and comprehensive way, and to mindfully “investigate” them by a series of questions and turnarounds, thus reducing their perceived level of stress. Like other psychological models, such as cognitive behavioral therapy, IBSR technique assumes that thought precedes feelings and behavior and thus it is
http://dx.doi.org/10.1016/j.eujim.2016.04.001 1876-3820/ ã 2016 Published by Elsevier GmbH.
Please cite this article in press as: C. Landau, et al., Inquiry-based stress reduction (IBSR) meditation technique for BRCA1/2 mutation carriers—A qualitative study, Eur. J. Integr. Med. (2016), http://dx.doi.org/10.1016/j.eujim.2016.04.001
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the primal cause of stress and suffering [16,17]. Yet, unlike cognitive restructuring, that addresses deliberative thinking and rationality to answer questions, IBSR relies on one’s inner wisdom [18,19]. This process produces an essentially different experience as its discoveries feel as an emotional insight [19]. During the meditative process, people acknowledge their natural responses, which lead to a sense of self-control and inner peace, similar to other meditation techniques [16,20–23]. This technique does not require any intellectual, religious or spiritual preparation, but rather a will to reach self-awareness [16,17]. A randomized controlled research was carried out at the OncoGenetics Unit in Sheba Medical Center, Israel [24]. The current study is the qualitative part of the research and aims to qualitatively evaluate the effect of IBSR meditation technique on BRCA1/2 carriers. Qualitative research is a broad methodological approach that aims to deepen the understanding and knowledge regarding people's inner experience and to analyze the way they interpret and give meaning to their personal and social world. It is concerned with the subjective perception, as opposed to quantitative tools, such as questionnaires, which provide objective measures [25]. To the best of our knowledge, this is the first study that uses qualitative tools in order to evaluate the efficacy of IBSR technique. 2. Methods 2.1. Recruitment and sample A study was carried out at the Onco-Genetics Unit in Sheba Medical Center, Israel. All cancer-free Jewish women who were genotyped at the unit between January 1, 2000 and December 31, 2010 were eligible for recruitment if they harbored any of the predominant pathogenic mutations in either the BRCA1 or the BRCA2 genes and were being followed-up in the high-risk clinic at Sheba’s “Meirav” Center. All eligible women (n = 67) who agreed to participate, were randomly assigned to either intervention or control group. The intervention arm (n = 33) included two groups who met on different days of the week. The participants were assigned to each group according to their schedule preferences. One group (n = 15) was selected randomly and its participants were contacted by phone and were informed about the qualitative research. All the women agreed to participate in the study. The researcher interviewed all 15 women and realized that common contents emerge from the interviews, with no new theoretical insights, as defined by the theoretical concept of “saturation” [26]. The study was approved by the Ethics Committee of Sheba Medical Center. All the participants completed an informed consent form before study entry. 2.2. Intervention method The first stage of the IBSR technique involves identifying stressful thoughts in a systematic and comprehensive way and writing down the thoughts about various situations perceived by the person as stressful by using “Judge-your-neighbor” worksheet. (Appendix A) [16,17]. In the second stage, the participants choose the main thoughts they had written down and investigate them by using four questions and “turnarounds”. Examples of stressful thoughts are: “My husband doesn’t listen to me”, “I will have cancer for sure”. The participants examine their thoughts by the following questions: (1) Is it true? (2) Can I absolutely know that it is true? (3) How do I react when I believe that thought? (4) Who would I be without the thought? This stage is meditative and the participants are guided to search the genuine answers to the four questions with no pre-defined agenda. The guidance is to be in a state of witnessing awareness in which a person observes the
thoughts that come into mind without trying to control or direct them. Encouraging this kind of meditative ability is a central component of the technique. The next stage is the turnarounds, in which the participants experience a revised interpretation of reality. For example, if the original thought was: “My husband doesn’t listen to me”, possible turnarounds can be: “I don’t listen to my husband” (turnaround to the other), “I don’t listen to myself” (turnaround to myself), “My husband does listen to me” (turnaround to the opposite). The participants are asked to find three genuine examples in which the turnaround is as true as the original thought. By doing so, the participants can understand and experience that they do not have to automatically trust the stressful thoughts, but can choose different interpretations of reality. This way, situations perceived as stressful, such as a visit to the doctor, can be experienced with peace of mind and connectedness [16,17]. The technique involves consideration of “three kinds of business”: My business, the other's business, and the universe's business (things we have no control over). The assumption is that most of the time we are occupied with thoughts that are not necessarily related directly to “our business”. It invites the participants to be aware, inquire and let go of these thoughts, hence becoming less judgmental about their surroundings, According to Byron and Stephen [16]: “Much of our stress comes from mentally living out of our own business. When I think, ‘You need to get a job, I want you to be happy.,’ I am in your business. When I’m worried about earthquakes.or when I will die, I am in God’s business. If I am mentally in your business or in God’s business, the effect is separation. The IBSR intervention included weekly group meetings (3.5 h/ meeting) and weekly individual sessions with a facilitator (1 h/ session) for 12 weeks. The group meetings were guided by two facilitators trained at “The Institute of The Work”, an international learning center based in the US [27]. All the sessions were standardized according to a training manual, developed for maintaining consistency in the program. The home practice included a weekly investigation of a stressful event by using “Judge-your-neighbor” worksheet. In addition, participants had a weekly phone call with a facilitator and performed an investigation with him over the phone. Participants were considered active if they were present in at least 75% of the group meetings and completed 75% of the home practice. The facilitators had a short meeting after each group session (15–30 min), to evaluate the intervention process. In addition, they provided the principle investigator a weekly written report regarding the individual sessions. 2.3. Data collection Data was collected by using semi-structured interviews. The interviews were conducted during the week before and after the 12-week intervention. None of the women chose to have the interview at their house due to privacy considerations. The goal of a semi-structured interview is to create an open dialogue between the interviewer and the interviewee and to provide the opportunity for people to tell their story openly and freely with minimal interference [25]. At the first interview, women were asked the following question: “What benefits do you wish to receive from the intervention?" in order to estimate their expectations regarding the workshop. At the second interview, a general question was presented to the interviewee: ‘Please tell me about your experience in the workshop’. When required, elaboration or clarification questions were asked. During the interviews, a recording device was used in order to document the interviews precisely as possible. The interviews were transcribed, while ensuring that personal information remained confidential.
Please cite this article in press as: C. Landau, et al., Inquiry-based stress reduction (IBSR) meditation technique for BRCA1/2 mutation carriers—A qualitative study, Eur. J. Integr. Med. (2016), http://dx.doi.org/10.1016/j.eujim.2016.04.001
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2.4. Data analysis The interviews were analyzed using the Interpretative Phenomenological Analysis method [25]. This method aims to investigate people’s experiences from their subjective point of view, while emphasizing the way they make sense of their personal and social world. This method included several phases. First, each transcript was read closely several times; significant topics were marked, and attention was directed to language, use of key words or metaphors. In the next phase; the main topics of each interview were identified and conceptualized into themes; concise phrases that aim to capture the essence of the text. Analytical or theoretical connections between the themes were observed to compose the superordinate themes [25]. In addition; the interviews before and after the intervention were compared in order to compare women's expectations regarding the workshop with its actual contribution. Fig. 1. The qualitative data analysis.
3. Results Fifteen Jewish Israeli women carriers of one of the predominant mutations in BRCA1/2 participated in the first interview before the intervention. Thirteen women completed the second interview. Two women left the program; one due to unwillingness to deal with emotional issues and the other due to religious reasons (difficulty coming to the group meetings on Friday due to repentance). The demographic and medical data of the 15 participants are presented in Table 1. Mean age of participants was 47.6 years. Most of the women were married (86.7%), with children (80%) and had an academic education (60%). Ten participants (67%) underwent prophylactic oophorectomy.
Table 1 Demographic and medical characteristics of the study participants (n = 15). Characteristic Age Age Group
No. (%)
Mean (SD) 47.6 (8.6)
<40 40–45 45–50 >50
4 2 3 6
Marital Status
Married Single
13 (86.7) 2 (13.3)
Children
Yes No
12 (80) 3 (20)
Education
High School Post High School Academic Degree
4 (26.7) 2 (13.3) 9 (60)
Religiousness
Secular Traditional Religious Missing
12 (80) 1 (6.7) 1 (6.7) 1 (6.7)
Country of origin
Israel Other
14 (93.3) 1 (6.7)
(26.7) (13.3) (20) (40)
Number of breast and ovarian cancer Cases in family
2.53 (1.07)
Number of other cancer cases in family
1.4 (1.11)
Prophylactic oophorectomy SD = standard deviation.
Yes No
10 (66.66) 5 (33.33)
The data analysis revealed four superordinate themes (as detailed in Fig. 1). The personal data, including the participants’ name, remained confidential, according to study protocol, approved by the institutional ethics committee. The participants’ names in the following section have been changed in order to ensure their privacy. “Myself”- This superordinate theme includes various topics regarding the inner world of the women, their concerns and conflicts, as well as their strengths and abilities. Most of the women dealt with the dilemma of how much they deserve to place their personal needs in the center: “I try to put myself in the center . . . I go to workshops, something I never did before. I learnt how to say no.” (Irit), “I used to think about others all the time, I didn’t put myself in the center” (Miri). They described personal fears and emotional difficulties, such as: “I felt that life became too difficult. Too many issues to deal with” (Nira). However, women also described their inner strength and their ability to cope with these difficulties: “I felt brave and so strong. I am so lucky to be like that. I practice Buddhism. I read. I exercise” (Vered); “I made a lot of changes, I am more at home. I am more positive, more optimistic” (Michal), “I do reiki. It is very relaxing. I write things when I get nervous. I read books” (Rachel). “Being a BRCA carrier”- Women described various issues regarding their medical state. They experienced anxiety and stress: “The day I discovered it, I was shocked. I didn’t know how to react. it was horrible” (Gilat). They were worried due to the high risk of cancer and expressed fears and loss of control: “Last year I had MRI. I was so scared and distracted while waiting for the results” (Michal). “The surroundings”—Women described different interactions with their surroundings, usually as stressful and demanding, and apparently it was not always related to their medical condition, for example: “He is a brilliant kid. but he has a short temper and it leads him into troubles . . . I was worried what will happen in Junior High (Irit), “On our daily routine, we encounter various stressors, problems and difficulties we have to deal with. Sometimes it is difficult to cope. The world seems like a terrible place” (Gilat). As shown in Fig. 1, these three superordinate themes overlap, for example- being a BRCA carrier is a major cause of concern for the women: “The fact that I know I am a carrier feels like a gun pointing at me. You have a constant fear” (Miri). In addition, the mutation affects their close relationship: “What will be with my children? Who is a carrier and who is not? Who might pass it to future generations? One of my dilemmas is when should I tell them they need to have the tests” (Rivka), “I hope that if I am diagnosed with cancer, I
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will know how to cope with it without being a burden on my family (Nira). The data analysis revealed that by using The Work technique, women managed to systematically investigate various issues regarding these three dimensions, which helped them to cope and feel better – “A great gift. and the inquiries, It helped me solve issues” (Vered), “I was surprised how much The Work works. It is practical,. it gives you tools. it is clear what you need to do” (Danit). This revealed the fourth superordinate theme – “The Work intervention technique” which combined the other three superordinate themes. Regarding the intra-personal level, women described an inner change due to the intervention, which included a sense of acceptance, hope and gratitude. They detailed feelings of relaxation and confidence: “The course was excellent. I learnt how to cope with small problems, I think I am more relaxed” (Rachel), “Someone told me- something is different about you, you have changed for the better. You are more confident, more charismatic. I think it is because of The Work. I gained a different perspective” (Margalit). In addition, they described a personal change and a new life perspective: “I see things differently and it helps.. to look at the glass half full.. to accept reality and to try to find a way to deal with it. It (the workshop) helped me perceive life differently” (Margalit), “I didn’t know that our thoughts cause us suffering.. Now I understand that you can’t changes the things that happen to you, but the thoughts” (Jacqueline). Regarding the dimension of being a BRCA carrier, the intervention helped women to better cope with their worriers and difficulties: “You can get tools to deal with the gene. It doesn’t have to control our lives” (Vered), “When she (her daughter) heard the news.. she cried for 24 hours.. now I have tools to talk to her—Are you sure you will have cancer? Is that the truth?” (Nira), “The workshop helped me to deal with the thoughts regarding cancer. I still worry, but I think less. It balanced my thinking and fears” (Irit). In addition, women met other carriers at the workshop. They described a sense of “togetherness” with them: “I am in a group with people like me, we are all equal. We are all in the same situation” (Margalit). Their common experience helped them take things into the right perspective and maintain a positive attitude: “Amazing women. So strong. I admire them, it teaches you not to fear” (Vered), “It was nice to meet women who are in the same state as me. It is the first time I meet other carriers. Amazing women. I learnt from them” (Gilat). Meeting other women who cope with similar issues legitimized their own feelings and difficulties. They described them as a source of support and encouragement, as well as a source of information. Regarding their surroundings, women perceived the program as a practical method for helping them to cope better with stressful interactions. They were highly satisfied with the intervention technique, in particular with the concept of “the three kinds of business” and implemented it in various situations: “The thing that helped me the most was the three businesses. I need to be in control all the time. I felt that I am interfering with other people’s business . . . I am more relaxed. I told myself- leave it, it’s not your business” (Vered), “It (the three kinds of business) really helped me because I was not aware of it before . . . I realized that most of the time we think about other people’s business. The inquiry helped me to be more authentic. and not to interfere” (Michal). In addition, the women described personal and close relationships with the staff and perceived them as a source of motivation for change. They described them as professional, committed and a significant part of the program: “The individual practice with the staff really helped me. I felt their commitment and their willingness to help; they did it with all their heart” (Michal). A comparison of the interviews before and after the intervention revealed that the workshop fulfilled women's prior expectations, such as: to sleep better (Nira), to love herself as she used to before the mutation discovery (Jacqueline), to cope better (Rebecca) or to gain inner strength (Vered).
Although women were satisfied with the intervention, they described several limitations of the workshop. First, while some women continue to practice the technique after the end of the program and most of them reported its efficacy in their everyday lives, others were skeptical about their ability to implement and practice the technique without regular group meetings and the facilitators’ personal guidance. Second, women described difficulties in implementing the new concepts and techniques in one main area—the concerns regarding their children. It seems that this emotional and sensitive issue needs longer and more intense practice with deeper investigation in order to be fully implemented. The workshop improved women’s coping with their medical state; However, it appears that this central issue should also be further practiced in order to be fully resolved: “These rocks are difficult to break. heavy, strong rocks. One is the disease. the second is my child. I think that in order for it (The Work) to help me with these issues, it should really become my way of living, and I am not there yet ” (Michal), “I think I am in the same place regarding the concerns about my children” (Margalit), “It (The Work) helped me to change my attitude regarding disease, death. But it is not stable enough. I don’t know if I am strong enough” (Danit). 4. Discussion The current qualitative research demonstrated the effect of IBSR intervention on BRCA carriers. It revealed that this meditation technique combines and positively affects three important and central dimensions in women’s lives- their inner-emotional world, their experience as being a BRCA carrier and their interpersonal interactions. Women were satisfied with the program, which fulfilled their prior expectations. A theoretical model of psychological well-being includes six dimensions of wellness: (1) Self-acceptance—a positive attitude toward the self, which acknowledges and accepts its good and bad qualities. (2) Positive and reciprocal relationships with others, capability of empathy, affection and intimacy. (3) Autonomy in thoughts and action—ability to resist social pressure and to regulate behavior and thoughts by personal standards. (4) Environmental mastery and competence- ability to manage complex external surrounding, to choose or create contexts suitable to personal needs and values. (5) Purpose in life—a sense of meaning to life. (6) Personal growth and development—feelings of realizing potential, openness to new experiences [28,29]. The effects of IBSR in the current study can be examined in light of this theoretical framework. First, the intervention improved women’s self acceptance, including different aspects of their personal experience, such as being a BRCA carrier. Meeting other BRCA carriers legitimatized their coping process and helped them to accept their feelings and difficulties. Second, it strengthened women’s relationships, specifically with family members and work colleagues. They described more relaxed and authentic interpersonal interactions. This finding is supported by the randomized clinical trial that demonstrated that an implementation of The Work intervention improved perceived family support among carriers [24]. Third, women's increased autonomy in thoughts and action was demonstrated by their ability to put their needs in the center and to attend to them in addition to the needs of their surroundings, which used to have almost an exclusive influence on their decisions. Fourth, their implementation of the intervention’s practical tools increased their ability to manage their surroundings according to their personal needs and deal with external contexts, such as stressful work environment, with a sense of balance and control. Finally, women described a process of personal growth in terms of increased confidence and a new life perspective. Previous studies have demonstrated that positive psychological states have important implications for physical health in aspects of
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prevention and recovery processes. For example, the ability to find meaning in response to stressful events was related to positive immunologic and health outcomes (e.g. lower rates of AIDS-related mortality) [30]. Positive affect was found to be related to improved parameters of neuroendocrine, cardiovascular and inflammatory processes (e.g. low cortisol levels, lower heart rate) [31,32]. The correlation between positive psychology and health can be explained by a direct effect, for example encouraging health behaviors (e.g. physical exercise, diet), affecting the autonomic nervous system (e.g. reducing heart rate) and the endocrine system (e.g. reducing cortisol levels). Another possible explanation is that psychological well-being works as a buffer of stress, reducing its negative effects on physiological systems [33]. A study by Tollin [34] demonstrated that reduced psychological well-being is a common phenomenon among BRCA carriers. Given its important implications, it is highly important to address this factor by adequate interventions in order to improve women's physical and emotional health. In accordance with the quantitative analysis of this pilot study [24], which demonstrated preliminary evidence regarding the technique’s effect on perceived family support, the qualitative part revealed the impact on “the surrounding”, one of the main themes of the participants. This finding provide an additional support to the significance of the interpersonal issues for BRCA carriers. However, using qualitative tools, such as a semi- structured interview, helped to investigate the personal experience of the carriers and their interpretations, revealing more significant issues, they deal with, such as intra-personal aspects of coping. We are aware of several limitations in this study. It encompassed relatively few female mutation carriers all from a single medical center in Israel. It included only one IBSR group from the two intervention groups, which might introduced a risk of bias. It
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evaluated only the short-term effects of a short mindfulness intervention. The data was collected by conducting interviews, two personal conversations with the researcher, which may had an effect on the participants, in addition to the intervention itself. In addition, several women described difficulties in implementing the technique by themselves after the end of the intervention, specifically in regard to the implications of being a carrier on their children. To conclude, the current qualitative study demonstrated that the implementation of IBSR intervention in a population of BRCA carriers has a positive effect on emotional and interpersonal dimensions in women’s lives. These dimensions were found related to psychological well-being, a factor with important health implications. These results should be validated in future largescale studies and longer follow-up evaluation in order to expand the understanding regarding the technique's potential efficacy as a tool for improving well-being among a population with elevated risk for developing cancer. Author contributions All research done by the authors. Financial support “The Work” Foundation, a non-profit 501ã organization partially supported this study. Conflict of interest None.
Please cite this article in press as: C. Landau, et al., Inquiry-based stress reduction (IBSR) meditation technique for BRCA1/2 mutation carriers—A qualitative study, Eur. J. Integr. Med. (2016), http://dx.doi.org/10.1016/j.eujim.2016.04.001
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Appendix A. “Judge-Your-Neighbor” worksheet*
Please cite this article in press as: C. Landau, et al., Inquiry-based stress reduction (IBSR) meditation technique for BRCA1/2 mutation carriers—A qualitative study, Eur. J. Integr. Med. (2016), http://dx.doi.org/10.1016/j.eujim.2016.04.001
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Please cite this article in press as: C. Landau, et al., Inquiry-based stress reduction (IBSR) meditation technique for BRCA1/2 mutation carriers—A qualitative study, Eur. J. Integr. Med. (2016), http://dx.doi.org/10.1016/j.eujim.2016.04.001