Breast Cancer knowledge, perceptions and practices in a rural Community in Coastal Kenya

Breast cancer accounts for 23% of all cases of female cancer in Kenya [1]. The majority of patients present with late stage and locally advanced disease, resulting in high mortality rates [2]. A necessary first step to improve breast cancer outcomes is improving breast healthcare and breast cancer knowledge in local communities. Another necessary step to mitigate late presentation of the disease is understanding the local barriers to early detection, accurate diagnosis and appropriate treatment [3].

The limited data for breast cancer incidence that are available from Kenya are predominantly urban, [1] and hospital-based [4]. It is likely that breast cancer is also a major health problem in the underserved rural areas of Kenya, but currently very little data exist on breast cancer incidence, breast cancer knowledge and health seeking practice of women from these populations. Women in low- and middle-income countries (LMICs) like Kenya may face multiple socio-economic, religious, cultural, health care provider and health systems barriers to accessing optimal breast cancer care [5].

In many rural communities of Kenya, men are important decision-makers in the family, however, there are no studies evaluating the influence of men in a woman’s breast healthcare seeking behaviour. Furthermore, there are no studies from Kenya directly assessing the knowledge of breast cancer among men.

We conducted a mixed methods study within a rural coastal community of Kenya to inform effective design of future interventions to improve access to breast cancer services. The aim of this study was to assess knowledge, perceptions and practices related to breast cancer among women, male heads of households, opinion leaders and healthcare providers in the coastal community of Kaloleni sub-county, Kilifi County, Kenya. Our secondary objective was to explore the role of male heads of households in influencing a woman’s breast health seeking behavior.

Our mixed methods study assessed the breast cancer knowledge, perceptions and practices of women, male heads of households, community opinion leaders, and health care workers in a rural coastal community in Kenya and describes gender-based and structural barriers that prevent women from accessing breast cancer care. To our knowledge, this is the first study from Kenya that also provides insight into the male heads of households’ knowledge of breast cancer and their role in influencing their wives’ access to breast health care.

Nearly half of the women in this study had no formal education, and nearly all of the others had only attended primary school. Most had heard of breast cancer, and knew it was a serious disease, but only a quarter knew any of its signs or symptoms, and only 6% had ever had a clinical breast examination performed by a clinician. Over 90% of the women said they would go to a health facility within a week if they felt a breast lump, but most said that the decisions about whether and where to go would be made by their husbands or other family members.

The male heads of households were better educated, with 80% having had formal education. Over 90% said they knew that breast cancer was a serious disease, and they would take their wife to a health facility within a week if she had a breast lump. They also said they would support her, and not leave her, if she had breast cancer.

The Focus Group Discussions and Key Informant Interviews confirmed that the population, its opinion leaders, and even some of its health care workers had a poor knowledge of the signs and symptoms of breast cancer. In contrast to the quantitative survey results, however, the opinion leaders and health care workers believed strongly that stigma, social rejection, and fear of losing their husbands were important reasons for women to hide or delay seeking help for breast lumps, leading to later breast cancer diagnoses and poorer outcomes. They also felt that using traditional healers was much more common than the quantitative surveys would suggest, reflecting both the population’s ignorance of breast cancer signs and the individual’s hope that the symptoms were due to a less important, less stigmatizing problem, again leading to delayed diagnosis and treatment. The FGDs and KIIs also identified lack of trust in the health care system, inadequate access to services, and lack of standard breast cancer management guidelines throughout the healthcare system as reasons for late diagnosis, suboptimal care and poor outcomes.

There was evidence from the qualitative study that late diagnoses are common. Many of the survey respondents and members of the various focus groups defined breast cancer as a “wound” of the breast. This provides indirect evidence that, similar to most LMICs [10, 11], including Kenya [2], breast cancer patients in Kaloleni probably present at an advanced stage of disease when the tumour has ulcerated through the overlying skin. Moderate level of evidence suggests a link between delay in patient presentation with various factors that include, lack of breast cancer awareness, alternative treatment use, and rural residency among others [12].

Cultural, traditional and religious beliefs are some of the factors contributing to women not seeking breast cancer services from the health facilities. Key barriers to accessing breast health care were the lack of awareness of the risk factors, signs and symptoms of BC; the screening, diagnosis and treatment options for the disease; and access to accurate information. It is interesting to note that health workers also admitted they had inadequate knowledge about BC. They expressed a desire to be provided more educational and training opportunities about BC screening, diagnosis and treatment. This is not unique to Kaloleni; published data from a Nigerian teaching hospital reported that irrespective of age and professional qualification, more than 40% of the115 nurses who participated in their study regarded pain as a sign of early BC [13]. Similarly, a recent review article from India [14], reported that irrespective of their socio-economic and educational background, among the 7066 women aged 15–70 years surveyed, there was no improvement in the knowledge of risk factors for BC over an 8 year period; respondents demonstrated varying levels of awareness of risk factors such as family history (13–58%), reproductive history (1–88%) and obesity (11–51%) [14].

Efforts to improve breast health care requires the recognition of the important role health workers play in public education [15]. Community opinion leaders and health care providers can play a key role in educating and referring women for screening. Any proposed BC educational and training activity should therefore engage and target community leaders and various cadres of health professionals to ensure cascading of accurate information about BC at the community level and the public at large.

In our study, the data sources and the data collection methods for the quantitative and qualitative components differed, which may help explain some of the differences in the findings of these two components. The quantitative component consisted of interview-administered questionnaire surveys of female members and male heads of households, while the qualitative component consisted of group discussions with community leaders and relatively unstructured discussions with individual health care workers. Social desirability bias could have been a factor in the questionnaire surveys, especially because the questionnaires were administered by community health workers who were members of the community and were well known to those being interviewed. There were also differences seen in the results along gender lines. As noted above, the perception among health care workers, some heads of households, and FGDs of women was that there is often a lack of support for women with breast cancer from male heads of households. However, our survey findings and the FGD groups of men indicated that men would be financially and socially supportive of women in their household who were diagnosed with breast cancer. These discordant findings may be partly due to men answering questions the way they thought they “should” answer them, but it also may indicate that the real barrier may not be the men’s attitudes but the women’s perception of the men’s attitudes, and their (unfounded?) fear of rejection if their male partner found out about their cancer. This has important implications in terms of developing content for awareness programs. It is also important that some village chiefs and heads of households described a desire to be more involved in the breast health care of their wives and female cohabitants.

Perhaps the quantitative data and the openness expressed by some heads of households in the qualitative study reflect an opportunity for engagement of heads of households in breast health, either through community outreach or the CHWs. The role of husbands as a barrier to early detection practices has previously been reported; young Kamba women with breast cancer risked being abused and ostracized by their husbands [16], and the subservient role of women in many societies leads to denial of symptoms and delay in diagnosis [17]. There needs to be a continued commitment by civil society and governments to address issues related to the lack of female autonomy, lack of social support or social capital, and marginalization [18]. In addition, enhanced engagement of men in health decision making and use of study models that are sensitive to gender and household dynamics may support the male role in health decisions that pertain to women’s health, including breast cancer [19].

According to the quantitative results there was little interest among community members in using traditional healers to manage breast lumps; however the qualitative interviews with women, men, and health care workers described a much more significant role for these healers in responding to breast symptoms and in provision of health care in general. The role of traditional healers in breast cancer detection and treatment should be explored further, to understand whether they are, in fact, associated with delayed diagnosis and treatment in rural African communities. This has been previously researched in other geographical areas, and this belief has been identified among Chinese and South Indian women [20]. A complex interplay of cultural, spiritual, and individual experiences and perceptions results in traditional and spiritual healers often being the first port-of-call for women with breast symptoms [21]. Extending educational activities to and encouraging participation of traditional and spiritual healers in the implementation of local breast cancer control programs can be a bridge to build trust and mutual understanding among the various health sectors, potentially encouraging traditional healers to refer patients with breast cancer symptoms more rapidly to government health care facilities.

Structural barriers such as long distances to health facilities, lack of affordable services, lack of equipment to offer screening or treatment, lack of education about cancer, and minimal sensitization of both women and men to the symptoms of breast cancer and the options for diagnosis and treatment were cited as barriers to uptake of these services. Inadequate diagnostic facilities, requiring patients to travel long distances, and the costs of transportation, as well as lack of governmental support for screening, diagnosis, and treatment costs, which were all mentioned by our study participants, have previously been reported as major deterrents in getting timely advice and treatment for breast cancer [22].

Poverty constitutes the underlying common denominator and most important barrier contributing to lack of awareness and delayed patient presentation. Evidence from multiple studies show that poverty is manifested by lower income, lower education level, rural residency, and lack of access to healthcare systems [12]. In Kilifi County within which Kaloleni is located, the poverty rate is 70.8%, significantly higher than the national average of 45.9% [8]. In 2005, the World Health Organization (WHO) member states endorsed a resolution to advocate for the adoption of universal health coverage and proposed health financing systems that can alleviate barriers to access to health care [23]. However, there are multiple factors to consider, and financial solutions alone will not ensure access to health services [18].

The use of the Community Health Workers (CHWs) was repeatedly mentioned in our focus group discussions as a good avenue to extend educational activities which are more acceptable to the community. Community education and continuous sensitization to the signs and symptoms of breast cancer, the fact that early detection increases the chances for cure, and the options for screening, diagnosis and treatment will be key to empowering people with accurate knowledge and dispelling some of the myths about breast cancer, which will encourage women to seek breast health services in a timely manner. Organized outreach breast cancer screening activities involving the CHWs would also enable these volunteers to reach remote populations within their units better. Lessons could be learnt from The Deep South Network for Cancer Control (DSN), a community–academic partnership operating in Alabama and Mississippi [24], which formulated a community action plan to address cancer disparities through focusing on participation of local communities in education, research, and training. Some of the objectives were to increase cancer screening through raising awareness at the individual, provider, and system levels and training community partners to become effective advocates. The guiding principle and success of this plan depended upon trust, respect, and an appreciation of partners’ strengths and differences [25].

One strength of this study was the combined quantitative and qualitative approach, which allowed additional insights to be revealed when the data from the two approaches were compared. Other strengths were the questioning of the male heads of households and the coordinated questioning of women, men, community leaders and health care professionals.

There were also several limitations to our study. As with most survey-based studies, our quantitative data could have been limited by selection bias and social desirability bias, especially since the surveys were administered by CHWs (community members) who served as the interviewers. The interpretation of the findings of our qualitative research may also have been limited by research bias, although we tried to mitigate this by involving a multidisciplinary team of researchers in this analysis. Finally, this study was confined to a small geographic region of rural Kenya, which may limit the generalizablility of the findings to similar low resource settings.

Determining the level of breast cancer knowledge and the perceived barriers to accessing breast cancer care are the first steps in establishing locally relevant intervention programs to reduce the burden of this disease. A clear message from this study is the need for improved and coordinated breast cancer education in all groups in the society, including women, men, community leaders and all levels of health care workers. Future research should be encouraged to identify successful strategies to achieve this goal in poorly educated patriarchal rural communities like Kaloleni. There is also a great need for standardized patient management guidelines, more widespread and decentralized early detection and diagnostic services, and better access to necessarily centralized treatment services.