In this review, we compiled the literature from Asia, addressing all major domains of concerns following breast cancer and the women’s ways of dealing with the physical and psychological distress caused by it. The reviewed literature focused on Asian Women’s apprehensions about psychological and social disturbances and distress over the changed body image. We used the Lazarus and Folkman’s theory of coping, categorizing coping strategies as problem-focused and emotion-focused [14-16]. Breast cancer survivors making informed decisions, actively seeking professional help for the treatment of physical symptoms were the main problem-focused coping strategies. Seeking support from family and friends, turning to religion and prayers, diverting attention and focusing on their roles as caregivers were some of the prominent emotions focused coping strategies documented by the literature (Fig. 1)
Concerns of the breast cancer patients
Emotional concerns: Four-fifth of the included studies documented emotional distress of breast cancer patients. The anxiety and depression persisted much beyond the completion of treatment. Younger women or women with low social support experience higher emotional disturbance (. Wendy et al. quoted a woman saying, "I felt an overwhelming sense of powerlessness and loss of control of life’. We documented that fear of recurrence dominated in all phases of treatment and beyond. Women described a breast cancer diagnosis as a “death sentence” . Although studies across cultures documented anxiety, depression, and fear of cancer recurrence in breast cancer survivor women, study by Wendy et al., documented culture-specific differences between Caucasian and Asian women in anxiety by documenting that the Asian women focused more on the need for information about their disease and treatment. In contrast, Caucasian women emphasized the need for support [19, 20]. The longitudinal studies in our review reflected that overall psychological distress was dependent on and closely followed the physical discomfort during each phase of cancer treatment .
Physical appearance-related concerns: Nearly half (46%) of the 163 studies addressed perceptions and concerns regarding physical appearance and permanent change in the body. Breasts were regarded by women as a “symbol of femininity”, resulting into perceived unattractiveness and lowered self-esteem, and a woman equated “losing one breast to losing a beloved person” [22, 23]. Studies from high-income countries have documented a prevalence of body image concern in as high as 75% of women [24, 25]. Literature has documented that Asian or Asian women living in America were more conservative about discussing sexual health and body image issues, compared to American women . However, contrary to the existing literature, this review adds an important dimension that Asian women were concerned as well as vocal about body image and sexual disturbances.
Sexual concerns: These concerns were described by 36 (22%) of the studies. Loss of intimacy with a partner and loss of desire were the notable concerns. The studies quoted women saying “Once afflicted with cancer; the couple should not have sex; otherwise, it will recur. We have not had sex for four years since my diagnosis” . Not prioritizing woman’s sexual or other needs in a marital relationship could partly be an issue specific to Asian culture, as supported in a study by Marjorie et al. . They described cultural differences in how the women and their partners perceived the change in sexual and marital life. Authors documented that on direct questing about goals of the relationship, Asian couples were more focused on harmony in a marital relationship than intimacy or sexual activity, whereas European American women focused more on intimacy and physical relationships. Also, when couples of Chinese and Japanese origins were interviewed, the husbands defined the wives as caregivers and self-sacrificing rather than individuals who needed support and love, not prioritizing the needs of the women .
Social concerns: One-third of the included studies discussed women’s worries about changes in social life and isolation. Women perceived “cancer as a social stigma”, leading them to seek alternative or traditional healing and consequent delay in seeking timely medical care . Other reviewed studies concurred with this finding and simultaneously revealed that women expressed a strong social network and support from family and relatives like spouses, siblings, and parents, during the treatment [18, 30, 31]. This could be attributed to larger and closely-knit families in Asian context.
Financial concerns: Two-fifth (30%) of the studies addressed financial concerns of breast cancer patients. Compared to emotional, social, and body image concerns, these were less addressed in the literature that was reviewed. The probable reason could be that traditionally women are not viewed as financial support/ bread earners in Asian families, and the males in traditional patriarchal society carry out that role Southeast Asia has a large number of low-middle-income countries (LMICs) with a high out-of-pocket expenditure, which imposes a huge financial burden on the patients. On this background, More Asian studies are needed to explore the financial burden and its impact on the women undergoing treatment for breast cancer .
The lack of information about daily activities, food, exercise, and side-effects of treatment was a major theme emerging from the reviewed studies . With the access to information on the internet and social media, the patients often feel lost in vast pools of information and need the advice of healthcare professionals for clarity . Women expressed that their informed participation in the decision-making and treatment was poor. “Doctor sounded like a recorder, kept on repeating the same information. but when I asked how I can be an active participant in my treatment, he answered that there was nothing I could do” .
Coping strategies in breast cancer patients
Nearly three-fifths of the included studies described various ways and means used by cancer patients to deal with cancer and its effects in all the domains of life. Coping can be defined as an “individual’s cognitive or behavioural efforts to manage (decrease or tolerate) situations that are appraised as stress to individuals . The distress management strategies described in this review focused mainly on two categories problem solving and emotion-focused coping . The overarching theme that emerged was that women used multifocal strategies, and there was an interplay between different systems and processes to manage some of the cancer-related concerns.
Problem-focused coping: Women in the reviewed studies actively adapted lifestyles to face the challenges caused by treatment and its side effects and enhance recovery . Women masked the changes to cope with hair loss and loss of breasts by commonly tattooing eyebrows and wearing scarves over the head and upper body. They also actively participated in the treatment and they sought solutions like ‘lymphedema clinics. The Asian women expressed drowning in the flood of information from mass media and other sources and sought active help in solving the problems as well as choosing the right advice from the information overload. Active problem-solving measures as per Lazarus and Folkman theory, is a key to problem-focused coping, as was seen in Asian women.
Emotion-focused coping strategies. Strategies:
Social support: The included studies documented that, women mainly relied on support from their partners, friends and family members. The larger or ‘joint’ families that are more prevalent in Asian countries than in the western culture may have provided a larger pool of caregivers and interactions with social support systems, thus enhancing the role of family and peers in support systems . The women reported reversal of their caregiving role and expressed receiving emotional and physical support from the family during their treatment . This has also been highlighted by a review by Wellisch et al.; where Asian women felt more supported by their families . They were quoted “Usually, I’m the one who supports everyone. This time they were very concerned and took care of me” . Though social support was seen to be helpful in most of the reviewed studies, some studies in our review have also reported a negative adjustment or avoidance induced by family members’ fears and stigma . The closely-knit families in Asia on one hand, provide a large support network to the women and yet are a cause of concern and fear from social stigma.
Positive reappraisal and meaning-making: Our review documented how women positively reappraised the situation and actively worked on redefining the meanings and goals of life to cope, described as ‘meaning making’ . The review highlighted that, women who focused on minimizing the social disruption or disturbance, e.g. focusing on bringing up children, or another role functioning, coped better. Women were quoted saying, “I cannot just die, I have a three-year-old child and old parents, I have not fulfilled my obligations to them” . This adds to the insight into culture-specific functional role-driven coping in Asian women. This was also expressed by some of the cross-cultural studies performed in America by Marjorie et al. . The women as well as their husbands, viewed them as primary caregivers in the family.
Spirituality and religion-based coping: Spirituality and religion were common processes to deal with cancer across many religions in Asia, including Buddhism, Islam, and Hinduism [41, 42]. Women found solace and support in the concept of God and reading religious scriptures. There was a complex interplay of passive resignation to fate and God stating they are merely governed by God’s wish, and at the same time, actively seeking support in religious scriptures and God to express themselves and supporting themselves by practicing the spiritual teachings . Women were quoted saying “I consider this illness a test from God to test my faith. The wisdom is that God still loves me by giving me a chance to be closer to Him”. “Then I would feel that God had granted me peace” . Studies across Asia showed consistent evidence that women turned to religion and God to handle the stressful situations. Relationship of coping strategy and spiritual support could not be conclusively proved as described by Judith et al., and this could be context and culture specific finding across religions and countries in Asia. This culture-specific coping strategy needs to be taken considered and highlighted during the discussions with the patients by all the caregivers, especially healthcare workers.
Avoidance coping: Negative adjustment strategies like avoidance which is categorized as emotion-focused coping by Lazarus and Folkman was addressed by 6 out of 96 studies. There was no conclusive evidence whether avoidance coping helped women to cope better or not. Some of the studies documented that, women who did not have acceptance of body image used avoidance more prominently and did not cope well . Li et al. reported that women with avoidance and confrontation had better resilience . The authors argued that avoidance distracted women and forced them to focus on other and more positive aspects of their life other than breast cancer. This was under-addressed in our included studies and it was not possible to derive whether avoidance helped them cope better with the cancer. Other behavioural abnormalities such as rage, violence, or substance abuse were not reported as strategies in Asian women
The Asian perspective:
This review brings out culture-specific aspects of apprehensions due to breast cancer and dealing strategies to handle these problems. Social isolation and stigma were a common worry that Asian women faced leading to delays in diagnosis. Large closely-knit families and relatives were a major source of social support, and women found strength in this network. Women’s role as primary caregiver in Asian families provided an alternative focus for their attention, and during this period of distress and women coped better by positively reappraising the situation and focusing on their functional roles in the family. Thus, family played an important role in coping with cancer in Asian women.
Spirituality and religion similarly allowed the Asian women to accept the disease as ‘God’s wish’ or ‘testing times given by God’. At the same time, a complete surrender to God built in the faith that God will help them to bring end to sufferings and peace.
Contrary to the existing beliefs and literature , we documented that, Asian women were concerned and vocal about disturbances in their sexual lives and body image distress.
The healthcare workers, as well as other caregivers, need to focus on these culture-specific stressors as well as coping strategies and need to address them from the initial phases of diagnosis and treatment. This review documented that, emotional disturbances and unease closely followed physical symptoms, giving key learning for building this factor while attending to physical signs and symptoms.
Gaps in the literature
This review, as against other studies from Asia which address isolated issues or domains of concerns and strategies of coping among breast cancer women, gives a holistic view of all major domains of distress and strategies to deal with it. In doing so, we highlighted specific gaps in the existing literature. The majority of the reviewed studies were based in the hospital setting. The articles also did not mention the sex or designation and positioning of the interviewing persons. The setting of a clinic and members of the treating team conducting interviews would pose an unequal hierarchical relationship. Also, very few studies addressed the financial and sexual concerns of women. Exclusive studies in women from low socioeconomic status, women with metastatic cancer, and studies addressing the end-of-life concerns and issues were very limited.
Although we extensively searched some major databases, this review has limitations. Due to resource constraints, the search was restricted to English language publications, and we did not look at the grey literature and references of included studies. Secondly, we do not refute the possibility of study selection bias, as one researcher reviewed each full text. However, to mitigate this issue, every tenth article was reviewed for inclusion by an independent reviewer from the author team. Thirdly, there was heterogeneity in the methods and definitions used to describe various concerns and copings. This may have led to some subjectivity in the data extraction and importance attributed to certain aspects of adjustments and ways of dealing. Nevertheless, we tried to address the reviewers’ subjectivity by having weekly meetings and discussions. We did not assess critical appraisal of individual sources of evidence.