1 Background

South Asia is a populous and diverse continent, with most countries still developing [1]. Most of the population living in many low- and middle-income countries (LMICs) have extremely limited health services and substantial cancer burden. Despite the growing burden of cancer, it remains a low priority in healthcare planning and budgeting in South Asian LMICs [1]. According to Global Cancer Observatory (GLOBOCAN 2020), the estimated age-standardized incidence rate (per 100,000) in Asia is highest for breast cancer (BC) at 36.8 [2]. The age-standardized death rates (ASDR) of breast cancer are predicted to increase by 35% from 13.4 (95% CI 9.21–16.02) per 100,000 in 1990 to 18.1 (95% CI 13.23–21.10) per 100,000 in 2030 in South Asia, with the highest predicted change in ASDR in Pakistan (a 62% increase) and Nepal (a 47% increase) [3].

The risk of malignancy increases with age, early menarche, delayed first birth and menopause, nulliparity, short duration of lactation, birth control pills, obesity, excess consumption of fats, hormone replacements, environmental pollutants, and a positive family history [4,5,6]. Breast cancer’s clinical presentations include pain, inflammatory changes, nipple discharge, swelling, skin dimpling, nipple retraction, nipple discharge and most importantly a new palpable mass [7]. While most breast lumps are not cancer, 45% of diagnosed cancerous lesions are symptomatic, while the rest are detected during screening [8].

According to the World Health Organization (WHO), an important step towards early diagnosis is mass public awareness about cancer signs and symptoms and encouragement to seek help [1]. Since 1984, October has been recognized as National Breast Cancer Awareness Month (BCAM) as a health promotion tool. However, studies reveal that women in LMICs are not adequately aware of breast cancer, and have poor knowledge about the disease and screening methods. As expected, early treatments are rare in these countries, resulting in poor outcomes and high mortality rates [9]. WHO announced urgency in 2018 to reduce premature mortality from non-communicable diseases (NCDs), including cancer, as a part of the Global Action Plan for the Prevention and Control of NCDs 2013–2020 and the United Nations Sustainable Development Goals. They called for appropriate strategic investments in cancer control to reduce the burden of cancer globally [10].

This review's objective is to determine whether breast cancer campaigns in South Asia over time changed attitudes toward cancer screening, raised detection rates for the disease, and raised awareness of the disease's signs and symptoms.

A literature search using the terms “breast cancer,” “breast cancer AND awareness” and “breast cancer AND awareness campaigns” was performed. The inclusion criteria were limited to articles in English and studies conducted in the following South Asian countries: Pakistan, India, Bangladesh, Bhutan, Nepal, and Sri Lanka. No data was available for Afghanistan and Maldives. The screening strategies used to detect breast cancer along with the details about awareness campaigns conducted in the aforementioned countries were discussed in this review.

2 Challenges faced during awareness campaigns

Conversations about breast cancer have increased exponentially in print and electronic media. Multiple sessions are also organized in educational institutes, hospitals, and communities; however, the efficacy of such campaigns is still limited due to several reasons. Lack of awareness is one of the biggest barriers to breast cancer screening and early detection, and despite awareness, many factors prevent it from translating into a screening.

The scale of awareness campaigns is particularly limited due to a scarcity of resources in South Asia. This is reported as a challenge in many studies, such as Jabeen et al. [11] and Gadgil et al. [12]. The latter highlighted how the provision of equipment, drugs, and curative services takes precedence over any preventive measures, limiting the scope of any awareness campaigns in LMICs. No additional funding was provided for this campaign, as is normal for any other projects in this region, and that enhances the burden on the existing workforce to mail out the breast cancer informative brochures without any added incentives. Additionally, only eight volunteers out of 1,20,000 persons in Jeyapaul S et al. illustrates this disparity [13]. Existing health workers need to be integrated into awareness campaigns as well.

2.1 Personal and psychological beliefs

As it is linked to sexuality more than health, it is still considered taboo to talk about the breast due to conservative societal and religious beliefs [14, 15]. WHO reports the difficulty of using the word ‘breast’ in public, while ‘cancer of woman’ is the term for breast cancer [16]. Since it is viewed as a sexual organ [17], some even consider breast cancer to be a sexually transmitted disease, akin to AIDS, where you are to blame if you have the disease [18]. If a woman were diagnosed with it, her husband may question its origins because ‘having breast problems relates to the bad character of women’ [17].

Patients would rather not know they have breast cancer because having breast cancer is believed to be embarrassing, with symptoms such as hair fall, skin discoloration, and loss of eyebrows and eyelashes [15, 18]. In a cross-sectional study in Peshawar, Pakistan, embarrassment was the main barrier (24.8%) in visiting the doctor for breast-related problems [19]. Fear of physical deformation results in further psychological complications that hinder breast cancer awareness [15]. Since the breast is an organ that symbolizes femininity and motherhood, breast cancer is seen as a loss of femininity [15], especially since it is also linked to the complete removal of the breast [18]. This, coupled with the symptoms discussed above, results in body image issues, and apprehensions of divorce or abandonment by the husband.

Furthermore, there is shyness and embarrassment of revealing personal body parts to doctors, especially to male health service providers [15, 18, 20,21,22,23,24]. Having male doctors view or touch the breast is seen as a religious and cultural infringement, subject to condemnation by the family [15]. Breast cancer awareness campaigns have male volunteers, which could also be considered as a factor that hinders their efficacy.

Nihilistic beliefs towards cancer are another challenge posed during breast cancer awareness campaigns and their impact on screening uptake [22]. Besides the high treatment expenses and time commitment, breast cancer is deemed incurable and synonymous with death. The word ‘cancer’ itself has negative connotations in South Asia, and since women consider their life ended if they get a diagnosis, they avoid health checkups, doctor visits, and such campaigns [18], therefore, making the fear of being diagnosed a primary challenge in breast cancer awareness [25, 26].

Breast cancer is further viewed as a contagious disease that leads to social isolation and societal ostracization due to the insensitive behavior of people around the patient [22].

The predominance of misconceptions and myths about spiritual healing is another important barrier to successful breast cancer awareness campaigns in South Asia. Superstitious cultural beliefs that this only comes to those with sin or a result of immorality [27,28,29] are prevalent. Afflicted individuals would rather leave it to God or unconventional religious peers and faith healers for spiritual advice and medical support [14, 30]. These alternative healers prescribe useless remedies such as applying mud on the breast [31] and reciting spiritual spells or specific verses of the Quran [15]. According to Khan MA et al., 40.7% of Pakistani women wasted time on alternative medicines [32]. Increased reliance on alternative medicine treatments such as homeopathic, Hakeem, and home remedies was a challenge in the success of breast cancer awareness campaigns [26, 31].

2.2 Sociocultural and economic hindrances

In patriarchal societies such as South Asia, women’s health is often disregarded [33]. With other domestic responsibilities and caring for the family being their priority, women do not have the time for self-care. Their general ambivalence towards their health only changes if the pain becomes ‘unbearable’ [31]. Women are expected to take care of the family, but social support in the other direction is often limited in South Asia [15, 22, 34].

They are dependent upon family or spouses for financial and emotional support, as well as a company to visit the doctor which is often hard to find. Furthermore, since speaking about the breast is stigmatized, many women feel uncomfortable approaching male family members about this [7].

In many families, women hold daily-wage jobs, and skipping on that for breast cancer screening is not economically feasible [22]. This can be extended to include women who are busy with work to attend the awareness session in the first place.

Moreover, the high cost of breast and cancer screening is not viewed as a worthy investment for people in the lower socioeconomic class, especially since it is believed to end in death [32]. They would rather use that money to put food on the table. The financial constraint [18] that proceeds after a positive breast health check-up is not something they are willing to undertake [15]. In Pakistan, like many other developing countries, medical assistance from the government for patients suffering from diseases like cancer is negligible.

2.3 Lack of medical provisions

Breast cancer is also not seen as a condition worth exploring because of general distrust in medical facilities. Corporate hospitals are believed to prescribe unnecessary investigations, while government services are subpar. The conditions of public hospitals are unsatisfactory with long waiting times and multiple visits [15, 18]. Physicians are also mistrusted to deliberately delay diagnosis, misdiagnose the problem, or treat it inefficiently [19]. Even if patients were to get over their apprehension, some villages do not have screening facilities at the primary health centers [18]. In Pakistan, government hospitals experience a shortage of medical facilities like mammography, oncologists, and nursing specialists [35].

Shortage of staff and transportation are other practical challenges in conducting awareness campaigns in South Asian countries like India [13]. A new set of doctors need to be trained each year, ensuring that women doctors are freed up from other responsibilities by duty exchanges, and transportation should be provided to far-off villages.

3 Interventions

Given the prevalence of BC in South Asia, many studies conducted here have assessed the knowledge, attitudes, and perceptions of its audience around BC and self-screening. However, awareness campaigns informing the study population of safe lifestyle practices, risk factors and symptoms of BC, and breast self-examinations among other topics have been limited.

The mediums used to create awareness varied considerably, but the efficacy of the majority of the interventions was tested via questionnaires pre and post-intervention. For example, Jabeen et al. [11] and Khokhar et al. [36] both used training lectures, videos on breast self-examination (BSE), and pamphlets as their medium of choice. Jabeen et al. restricted their lectures on cancerous changes to the breast, BSE, and its importance to 5 min, which yielded a statistically significant (p < 0.001) improvement in BSE knowledge and practice in the intervention group at the end of six months and no change in the control group (p > 0.05). On the contrary, Khokhar et al. further used models to demonstrate BSE in their 5 training workshops (90–120 min each) for the nursing staff (n = 259) of a missionary hospital in Delhi, India. Risk factors for BC and knowledge of BSE both had a significant (p < 0.05) increase post-intervention.

Whereas Jabeen et al. [11] used monthly follow-ups for post-intervention analysis, a study conducted during the Pink Chain Campaign on Cancer Awareness in different women colleges in Delhi, Mumbai, and Jaipur in India supplemented lectures by oncologists and a screening program teaching BSE with literature related to cancer awareness emailed regularly to the intervention group (872 teachers) for 1 year [37]. Practice of BSE increased from 16.3% to 59.2% at 6 months and 64.7% at 1 year, while the knowledge of clinical breast examination (CBE) slowly rose from 18.2% to 29.1% at 6 months followed by 36.1% at 1 year. A refresher course three months after the first intervention was also seen in Vithana et al. [38].

The intervention was more interactive in Nisha et al. [39] and Vithana et al. [38]. Both these studies consisted of a multipronged intervention with interactive learning discussions and didactic lectures, among other things. The health education intervention in Tamil Nadu, India [39] further consisted of pamphlets in a local language, flipcharts, true story narration, and brainstorming for women (n = 266) living in the vicinity of the investigators’ medical college. As compared to 7.14% pre-intervention, statistically significant 64.7% (P = 0.0001, McNemmar's Chi-square test) women started practicing BSE as reported via house-to-house visits. Besides a 71.8% increase in knowledge, four women noticed carcinogenic changes through CBE and mammography [39].

On the other hand, Vithana et al. in Gampaha, Sri Lanka incorporated role plays and practical sessions for its intervention group (n = 38) consisting of public health midwives (PHMs), following a training guide developed before the two-day workshop [38]. As compared to the control group (n = 47), the knowledge in the intervention group rose from 57.8% (IQR: 53.3–69.4%) to 95.6% (IQR: 93.3–96.1%) and 93.3% (IQR: 90.6–93.3%) respectively at one (p < 0.001) and six (p < 0.001) months post-intervention. Similarly, practices too displayed a statistically significant (p < 001) improvement in the intervention group despite the same practice scores (61.5%) before the intervention [38].

The opposite end of the interactive spectrum was a self-instructional module administered to primary school teachers in Karad, India [40]. This module taught the intervention group (n = 60) screening of BC with an FDA-approved noninvasive handheld, mHealth point-of-care solution called Intelligent Breast Examination (IBE). A significant increase in scores (paired t value 23.902 at 0.05 level of significance) was reported.

Similarly, the employees (n = 22,500) of Bhabha Atomic Research Center in Mumbai, India relied on awareness from annual pamphlets (88,0000 over four years) on breast anatomy, physiological changes in the breast, and signs or symptoms of BC [41]. This was accompanied by the establishment of five weekly breast clinics in the primary health centers of the company’s health scheme that offered education and counseling on breast awareness as BSE by female nurses. The efficacy of this scheme was measured by the diagnosis of 27.09 women that attended these clinics, as the proportion of pathological node-negative and early (I-II) stage tumors diagnosed in the intervention period was higher in the intervention period (53.2%) than pre-intervention (46.2%). The proportion of advanced-stage tumors reduced from 21.9% to 18.4% [41].

Weekly clinics were also offered in conjunction with awareness in Jeyapaul et al. [13] where 8 volunteers and 17 female health workers were trained to conduct small group health education sessions in selected villages of Vellore, Tamil Nadu using PowerPoint presentations or flipcharts. 1891 women successfully attended the screening clinic in the first three and a half years of the program [13].

4 Conclusion

With South Asia mostly comprising developing countries, breast cancer awareness campaigns conducted in the region face multiple challenges ranging from personal and psychological beliefs to socioeconomic hindrances and lack of medical provision. Effective strategies such as role-plays, training videos, and interactive discussions should be employed in awareness campaigns to tackle these challenges and reduce the rates of breast cancer mortality by catching the disease early in its course.