Every Cloud Has a Silver Lining

Method

Results

More than 100 initial codes and approximately 20 themes emerged from the initial data analysis by two independent authors, which included familiarizing themselves with text and coding that was done in vivo and included abstract and generic codes that reflected the researchers’ insights. The authors discussed discrepancies, consensus, and assigning codes via negotiation. A second-level analysis included reviewing, defining, and clustering the themes, which led to the formation of eight categories that were reduced to four overarching categories: “conceptualizing illness and an uncertain future,” “less of a woman: questioning femininity,” “every cloud has a silver lining,” and “altruism or taking action.” Particular attention was paid to categories that illustrated the “existential plight of cancer” and coping strategies challenged and restructured by the experience of a life-threatening diagnosis. The findings were then contrasted with the existing body of literature.

Discussion

This study confirmed recurrent themes in the participants’ narratives about their initial diagnosis, including shock and disbelief, fear of death, uncertainty, ambiguity, and disintegration of life found in similar prior research. Previous studies showed that psychosocial distress, sometimes expressed as depression and anxiety in the period after diagnosis and treatment, were expressed more by younger women (Spencer et al., 1999; Avis, Crawford, & Manuel, 2004; Sharpley & Christie, 2007; Bantema-Joppe et al., 2015), which our study confirmed. The younger participants in our research vividly illustrated their narratives using negative emotions, self-blame, and internal causal attributions. Following Janoff-Bulman’s (1992) hypothesis, self-blame resulted from primary stressors and not personality traits, meaning that the participants’ distress levels, although significant, dealt with attribution of illness to factors outside the core self, providing a concrete sense of control and opportunities to change (Glinder & Compass, 1999). The results of this study may seem contrary to other quantitative research (Glinder & Compass, 1999; Bennett, Compass, Beckjord & Glinder, 2005; Friedman et al., 2007) but this could have been due to the different methodological approaches used and because the participants were interviewed in the post-treatment period and not within the same year of diagnosis.

In the post-treatment period, with excellent social support provided by their families and friends, the participants started appreciating life more and reorganized their priorities, similar to several other reports (Morse, 1997; Drageset, Lindstrom, & Underlid, 2010; Bozo, Gündoğdu, & Büyükaşik-Çolak, 2009; Bahrami, Taleghani, Loripoor, & Yousefy, 2015). Despite cancer, they managed to develop, grow, regain integrity, and adopt a new perspective on life. Another study that reviewed the findings of 14 articles on the experiences of breast cancer survivors also indicated that the development was seen as moving from actions toward healthier living and the renewal of values and priorities in life to the existential level of integrating and accepting death as well as ideas regarding spirituality and the meaning of life (Arman & Rehnsfeldt, 2003).

Several studies of breast cancer survivors who underwent different types of surgery reported that satisfaction with post-surgical appearance was related to psychological wellbeing (Margolis, Goodman, Rubin & Pajac, 1989; Al-Ghazal, Fallowfield, & Blamey, 1999, 2000; Contant et al., 2004; Andersen, 2009). In a systematic literature review of breast cancer and psychosocial wellbeing, Helms, Hea, and Corso (2008) demonstrated that disturbed body image was related not only to lumpectomy or radical mastectomy but also to changes in body mass index (Lankester, Phillips, & Lawton, 2002) and hair loss (Boehmke & Dickerson, 2005). The participants in our study also noted several times that they were highly stressed to see their bodies after surgery. However, contrary to a study conducted by King and colleagues (2000) in which the negative impact of mastectomy on body image was highest among younger married women, in our study, all but one participant managed to embrace their new post-surgical physical and psychological self and restore femininity despite male imposed societal norms of beauty and femininity in the rather patriarchal Bosnian society. Also, all but one of our study’s subjects reported no changes in the quality of their relationship with their partners and shared stories of their friends whose partners were not supportive or could not cope with either the physical or psychological changes the illness had caused, which was in line with the findings of Zahlis and Shands (1991).

All our study’s participants reported fighting cancer as their sacred duty because of, as one said, in the necessity of “seeing my beloved little girl growing up.” Having children might have been the source of finding meaning in their battle against cancer and required cognitive restructuring as an inevitable step people face when confronted with life-threatening situations. Finding the meaning in fighting cancer means reevaluating one’s purpose and role in life. As one participant said, “illness helped me understand the importance and meaning of life,” redefined their role as a parent and prioritized the child and his/her needs and care before their own, which was reflected in our participants’ sacred duty to fight cancer. In their study, Elmberger, Bolund, and Lützen (2000) also reported that despite their battle, women found additional strength to transform their distress and continue being good parents as they considered it their moral duty.

To psychologically adjust to stressful situations, reduce emotional costs, and empower themselves, the participants used different coping strategies. Similar to a study by Siegel and Schrimshaw (2002) and earlier research by Koenig (1994), religion appeared to be a significant coping strategy for our subjects. During the interviews, all the participants stated that they considered themselves religious/spiritual, but (re)discovered and demonstrated even greater reliance on faith and adherence to religious/spiritual beliefs after their breast cancer diagnosis. Belief in a higher being and attributing religious significance to hardships helped the participants persevere through adversity. They managed to find deeper meaning in the suffering caused by cancer. This is in line with research that showed that positive religious coping could be a protective factor and is associated with better mental and emotional health and personal growth through adversity (Pargament et al., 1998; Ai, Peterson, & Huang, 2003; Ai, Tice, Whitsett, Ishisaka, & Chim, 2007; Pargament, Magyar-Russell, & Murray-Swank, 2005). This positive religious coping defined as “an expression of a sense of self and spirituality” by Pargament and colleagues (2005) appeared to be a primary buffer against falling into despair in our study. One participant said, “spirituality was like a life-saving rope, it helped me get out safely after I had almost drowned.”

Despite the adversity and distress of a stressful and life-threatening illness, of which the participants were highly aware, they remained optimistic. It was likely that their optimism was grounded in their innate positive self-perception and previous coping experiences. One of the significant characteristics of optimists is the use of active coping strategies and emphasizing the positive aspect of a difficult situation. This study’s participants reported that facing a cancer diagnosis made them realize how neglectful they were toward themselves and was a wakeup call that shook them and reminded them to pay attention to themselves, live healthily, become vigilant about a healthy and balanced diet, get enough sleep, exercise as much as possible, and spend quality time with family and friends. Optimism as an explanatory lifestyle can also be related to cognitive reappraisal strategy, managing patients’ interpretation of disease as an opportunity, a hint to change a life, and reflect upon what is essential in life, which may lead to reflection and setting new goals, changing aspects of life or behaviors, and seeing their situation as a chance for personal growth and transformation (Tedeschi & Calhoun, 1995). Our study’s participants also reported avoiding stress, negative people, seeking psychotherapeutic help, and enjoying pets, which affirmed their changed behavior as reflected in their optimistic attitudes.

Altruism is also a type of adaptive coping strategy and mature defense mechanism reflected in obtaining pleasure through the selfless desire to give what people themselves want to receive. The women in our study reported having an innate need to help other women undergoing the same experiences. They felt they were responsible for helping others by raising other women’s awareness about their health, regular checkups, preventing diseases, sharing their experiences, and helping them “normalize,” ameliorate, and manage their distress. Our participants’ responsibility came in the form of acting selflessly by giving other women their previous experiences of fighting cancer. This could also be linked to the sacred duty of seeing the self in the quest to support, help save other women’s lives, or even prevent breast cancer. Altruistic behaviors in the form of offering support to other women could increase women’s empowerment and agency, which is a significant consequence of group support and consist of increased confidence and a sense of control in relation to the self, living with cancer, and interactions with others (Ussher et al., 2006).

Finally, empowerment can be achieved through different altruistic acts such as individual and group help and support, sharing their personal experiences and narratives privately and publicly, and providing comprehensive information that could also destigmatize (Klawiter, 2008) breast cancer and survival. Local breast cancer survivor activism is reflected in the local breast cancer associations Renesansa and BolestNijeKraj, which organize a local event called Šetajmozajedno u borbiprotiv carcinoma dojke (Race for the cure to fight breast cancer) held every year in September in different cities in B&H to raise awareness and help and support cancer survivors. Most of our study’s participants volunteer for this organization.

The qualitative data obtained from this study provided profound insights into the lived experience of Bosnian women with breast cancer, cancer-related challenges, and coping. The study subjects always walked a thin line between hope and despair, conceptualized stress as a dichotomy of a deadly warning of self-neglect, and had a new chance to “seize the day.”

Managing breast cancer calls for questioning femininity and the idea of the (previous) self that dramatically changed following radical mastectomy, called “less of a woman.” The participants reported coping with cancer as their sacred duty through religion, spirituality, optimism, and healthy lifestyles that the authors categorized as “every cloud has a silver lining. “Altruism or taking action was the final theme, as all of the subjects identified an almost innate need to help other women cope better, manage stress, and feel more in control over illness. Breast cancer survivors who successfully overcame many life-threatening challenges seem to come with the responsibility to help other women be it in the form of increasing awareness of the importance of early detection, advocacy and lobbying for screening and early intervention, and the procurement of drugs and equipment, and by showing compassion and support. By publicly sharing their narratives and providing comprehensive information, they want to destigmatize breast cancer and survival. Hence, despite their adversities and distress, breast cancer survivors still manage to maintain hope, find meaning in life, and eventually utilize positive and active coping styles as manifested in their increased spirituality, optimism, embrace of healthy lifestyles, and pink ribbon activism.

Despite this study’s positive findings, the sample was small, comprised of a homogenous group of young, heterosexual, married, and highly educated women living in the same city and actively involved with local breast cancer association, so the results cannot be generalized to larger target populations, even in Sarajevo. More research is needed to examine the challenges women of different ages and diverse socioeconomic backgrounds face and how they draw upon their strengths and from social support. Personal histories and contextual factors such as wars/post-war-related experiences, patriarchal societal norms and values, health reforms, political climates, and high unemployment rates should be considered in future research. A mixed-method study or triangulation would expand and strengthen this study’s findings and conclusions.

All types of screening for breast cancer, such as breast self-exams, clinical breast examinations, and mammography, save lives, and a combination of cancer prevention, early detection, and better treatment can have a significant impact on incidence and mortality rates. However, unlike neighboring countries and the development of various legislation and policies, B&H does not have national breast screening programs, has limited numbers of mostly outdated mammogram machines, and very long hospital waiting lists. Therefore, nationwide awareness campaigns and mobile mammography units (used in Croatia since 2004 and in Serbia since 2018, but only in their capitals) can target more women and ensure a more rational utilization of existing health centers.

Despite these challenging circumstances and lack of institutional support, this study’s participants demonstrated remarkable strength and initiative to destigmatize breast cancer and survival. Breast cancer survivors are initiating increased societal awareness, grassroots activities, and campaigns for digital mammograms. Those whose voices are not heard or are reluctant to join self-help groups can engage with health care providers. The local community and families should help implement preventive activities, mitigate the adverse consequences of illness and treatment, and enable smoother reintegration into society. Oncology departments must offer counseling to help patients reduce their problems and improve their quality of life by providing them psychological support.