The burden of chronic, non-communicable disease continues to grow throughout Africa and across the developing world. Although the most recent data from the World Health Organization show that the majority of deaths in Africa between 2000-2012 were from communicable disease at 61.7% compared to 28.6% for non-communicable disease and 9.8% from injury, this distribution is quickly changing.1 By 2020, 73% of deaths worldwide are expected to be due to non-communicable disease with 79% of these deaths occurring in developing countries.2-4 Many factors have been attributed to this rise including increased lifespan, modernization, globalization, poverty, and changing lifestyle.4,5 This problem is compounded by the fact that many health care systems are underfunded and ill-prepared to handle the current state of non-communicable disease and the inevitable rise over the coming years will put additional burden on these systems. Of the money that is spent on healthcare in Africa, most of which is from foreign sources, it has been estimated that 80% is spent on communicable diseases including HIV, malaria, and tuberculosis.6,7 Many health ministries acknowledge this disparity; however, little has been done to change this imbalance. This imbalance results in healthcare systems that are poorly prepared to handle non-communicable disease and a population that is uninformed of the risks, treatment, and prevention.8,9
A multifactorial approach will be necessary to improve the outlook of non-communicable disease in the developing world and important components will include improving access to health care services and improving education. One common approach to accomplish both of these goals in many countries in Africa and across the developing world is the community health worker (CHW) model. Under this model, community members are selected to serve as the first point of contact for health care and education. CHWs are members of the communities that they serve; they know the local language, culture, and people well and are thus in a good position to enact change.
The ability of CHWs to enact change and improve health care for medically underserved patients in both high and low income countries has been well documented.10-14 Their impact, however, is somewhat limited by their lack of medical knowledge and experience.15 Most have no formal medical education are often chosen because of their position in the community rather than the amount of medical knowledge they have.
In order to improve the positive impact of CHWs, an effective education program is necessary and should focus on the knowledge gaps and cultural attitudes of the community members in each region.10 Much work has already been done to understand these knowledge gaps in Kenya, Africa and the developing world and most studies demonstrate that knowledge is lacking.16-19 The focus for this study is on three non-communicable diseases – hypertension, diabetes, and cancer.
Hypertension and diabetes, both significant risk factors for cardiovascular disease, are common in Kenya.16-18 As such, more effective prevention and treatment of these conditions represents an excellent opportunity to reduce the overall burden of chronic disease. One study, which estimated the prevalence of hypertension to be 21% in rural Kenya found that 83% of participants with hypertension were not aware of their condition and only 3% were being successfully treated.17 Another study in Mombasa, the second largest city in Kenya, found the prevalence of hypertension to be even higher at 32% with only 53% of these individuals being aware of their condition and only 23% familiar with the causes and treatments.16 Knowledge of diabetes is also lacking. At an estimated prevalence of 3.58% and as high as 12% in some urban populations, diabetes is common in Kenya.18 One study found that 73% of people interviewed across four regions of Kenya had poor knowledge of diabetes and not surprisingly, education was correlated with a higher knowledge of diabetes.19
Cancer, which is more complicated to treat than other chronic diseases, is a target for primary prevention. Cervical cancer, the most common cancer for women in Kenya, has been the most studied since it is largely preventable with screening, vaccination, and safe sexual practices. One study in rural Kenya showed that 35% of respondents had never even heard of cervical cancer and only slightly more than half had ever heard of a Pap smear.20 Another study among patients in a government hospital in Nairobi found similar results with only half of patients knowing about cervical cancer and only 32% knowing about the Pap smear.21
The present study aims to understand the current state of knowledge and perceptions of these three chronic diseases – hypertension, diabetes, and cancer – in Nyeri, Kenya. A deeper understanding of the knowledge and perceptions of diabetes, hypertension, and cancer in this region, will guide and focus future education of both CHWs and community members on non-communicable disease.
Materials and Methods
Nyeri is a city located in the central highland region of Kenya, approximately 100km north of country’s capital, Nairobi. The city and surrounding villages has a population of approximately 125,000 people.22 The local language in Nyeri is Kikuyu; however, both English and Swahili are widely spoken. This site was chosen because there is convenient access to both rural and urban populations.
Standardized, open-ended interviews were conducted with one interviewer asking questions to one subject. Interviews were conducted either completely in English, in English with the assistance of a Kikuyu-speaking interpreter, or in Swahili depending on the preference of the participant. After recording the age and gender of the participant, the participant was asked four standardized, open-ended questions about each of the three diseases being studied – diabetes, high blood pressure, and cancer: i) What is (disease) and what are some signs and symptoms? ii) How does someone get (disease)? iii) How is (disease) treated? iv) How can (disease) be prevented?
Finally, each participant was asked an additional question Do you have anything you would like to share or any stories about how these diseases have affected yourself, your friends, your family, or someone in your community?
Each participant was allowed to answer each question as thoroughly as he wished and the next question was asked only when the subject indicated he was finished with that question or began giving repetitive information. During the interview, thorough handwritten notes were taken of each participant’s response and the notes were later transcribed electronically.
Participant selection and sample size
Interviews were conducted during daylight hours between 0900 to 1500 at multiple locations in both the urban center of Nyeri and in surrounding rural areas in order to get a wide range of participants. To identify participants, the interviewers walked through the community and asked people if they would be willing participate. Only individuals 18 years of age or older were allowed to participate and informed consent was obtained verbally prior to each interview. Individuals under 18 or who did not agree to participate in the survey were not included in the analysis. A total of two-hundred interviews was conducted and the sample size was determined based on a saturation of responses.
After reviewing the transcripts of all responses, a list of reported response features relevant to each disease was developed. These response features included elements that suggest an understanding of the disease etiology or pathophysiology (i.e. participant knows that diabetic patients have blood sugar that is too high or too low), signs and symptoms of the disease (i.e. hypertension causes headaches), causes of the disease (i.e. cancer is caused by tobacco use), and treatment of the disease (i.e. diabetes can be treated with insulin). Each subject’s disease-specific response was then analyzed for the presence or absence of each specific response feature. Response features with the same meaning, despite exact wording, were considered equivalent (i.e. a participant who said that diabetes causes polyuria was given credit for the increased urination response feature). Response features that could be considered both a cause and treatment (i.e. lack of exercise causes hypertension or exercise is a treatment for hypertension) were considered equivalent responses.
Not everyone who was invited to participate in an interview agreed to participate and only data from individuals who completed interviews is included in the analysis. A total of 200 individuals completed interviews including 99 females and 101 males. Subjects had a mean age of 37.1 years old with a standard deviation of 14.4 years.
Interviews were conducted in nine different localities across Nyeri County that included both rural and urban settings. Most interviews lasted between five and fifteen minutes depending on the length of answers given by the subject.
Of the participants interviewed, 8 people (4%) reported having no formal education, 166 people (83%) reported having completed at least Class 8 (equivalent to 8th grade in the United States), 104 people (52%) reported finishing at least From 4 (equivalent to 12th grade in the United States), and 22 people (11%) reported having completed at least some post-secondary education (Table 1).
Non-communicable diseases such as diabetes, hypertension and cancer represent a significant and growing burden to the health of people in the developing world.1-4 While the barriers to decreasing the burden of chronic disease are multifactorial, education of both community members and community health workers will play an important role. This study identified significant knowledge gaps in this region, consistent with prior studies.16,17,19-21,23
While overall knowledge of diabetes was lacking in this study population, the most notable knowledge gaps identified related to lifestyle risk factors and signs and symptoms. While most of the research on diabetes knowledge has focused on people with the disease, our findings are consistent with previous studies sub-Saharan Africa.19,23 Since symptom identification can be a motivation for people to seek care, education should focus on recognizing signs and symptoms of diabetes, especially among CHWs who are well situated to identify those at risk.
This study also identified a poor understanding of hypertension among participants. Most notably, many of the signs and symptoms named were overemphasized. A variety of responses were given including headache, dizziness and fainting, fatigue, difficulty breathing, swelling, anger, and vision changes. While these are all potential signs and symptoms of hypertension, no participant said that hypertension can be asymptomatic. This represents a significant disconnect since hypertension commonly presents asymptomatically and other studies from Kenya suggest that the majority of people with hypertension are unaware that they have the condition.16,17 Education on the importance of regular screening should be emphasized along with efforts to improve screening of hypertension through home and community based programs is already underway.24,25 Additionally, respondents seemed to overemphasize stress as a cause hypertension when other factor such as diet, lack of exercise, and obesity are more significant contributors. Education to modify diet and increase exercise in a culturally relevant way represents an additional opportunity to prevent and treat hypertension.
Compared to diabetes and hypertension, cancer is more complicated and expensive to treat. The most cost-effective interventions to reduce the burden of cancer will focus on primary prevention rather than treatment.26 While slightly over half of respondents were able to name at least one type of cancer, knowledge of risk factors was lacking. For example, only six people (3%) surveyed mentioned that cancer can be caused by sexual activity, or by a sexually transmitted infection, even though cervical cancer is the most common cancer among women in Kenya and is almost always caused by an infection with the sexually transmitted human papilloma virus (HPV).27,28 In addition, no one mentioned Pap smears specifically as a way to prevent or screen for cervical cancer. This finding is consistent with the results from other studies in Kenya which demonstrated that many women surveyed in both rural and urban hospitals had not even heard about cervical cancer or were not able to describe anything about the disease including prevention or treatment.20,21 While this may have been due to the cultural taboo of discussing sex, it is more likely due to the fact that widespread Pap smear programs or HPV vaccination programs have not yet begun in Kenya. Additionally, only 20% of people identified smoking or tobacco use as a cause of cancer. While tobacco use is only attributed to 6% of cancer deaths in Africa compared to about 20% of cancer deaths worldwide, most likely because of the relatively low life expectancy and low smoking prevalence, it is increasing in some parts of Africa.26 Education on the risks of tobacco represents an additional opportunity for cancer prevention.
A cultural belief about cancer that several participants (4%) mentioned was that cancer is a curse. Specifically, one respondent explained that going against your parent’s requests after they had died, for example: selling their land against their wishes could give you a curse that causes cancer. Some participants also held the cultural belief that cancer is brought about by mimicking values and practices of the Western world such as the Western diet and vaccinations. Although relatively uncommon among our participants, these beliefs are an additional barrier to cancer prevention and treatment.
Our data does have some limitations and potential biases. Due to logistical limitations, random sampling was not feasible in this study and a relatively low sample population was used. Interviews were conducted in the community during daytime hours from 0900 to 1500 and this likely biased the sample toward certain demographics who were available to participate during this time. In addition, many people who were approached to participate in this survey declined to participate. Still, there is a wide range of ages and education levels in the people who did participate so this survey likely still provides a representative sample. One additional limitation was the manner that questions were asked. Since questions were open-ended, direct recollection was required by the subjects being interviewed.
There are many gaps and misconceptions about non-communicable disease in this region. Based on the knowledge deficiencies identified in this study, future public health and CHW educational programs should have an emphasis on preventative measures and lifestyle factors that contribute to each disease. Specifically, for diabetes the importance of diet and exercise should be targeted. Community health workers should be educated on appropriate dietary factors that contribute to the disease, with an additional emphasis on the signs and symptoms of diabetes. For hypertension, it will be important to emphasize that it is often an asymptomatic disease so screening is necessary despite the absence of symptoms. For cancer, smoking cessation, and moderate alcohol use are important concepts to emphasize. Safe sex practices are also important to prevent cervical cancer as well as other sexually transmitted disease. While it is also necessary to educate women on the importance of screening and vaccination to prevent cervical cancer this will likely have little effect until such services are widely available.